Category: Disability

  • Psychiatrists in Denmark are still threatening to forcibly detain a severe myalgic encephalomyelitis (ME/CFS) patient in a psychiatric hospital. They have dismissed the calls and vital severe ME information that more than 4,000 people in the ME and long Covid community, including renowned international patient organisations, presented to them as from “uncredible sources”. Now, 26-year-old Line Langager Anderson says that her psychiatrists are even using it against her, and that it has only furthered:

    their belief that I am delusional.

    Severe ME/CFS patient in Denmark at risk

    Myalgic encephalomyelitis (ME/CFS) is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes debilitating symptoms – which you can read more about here.

    In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    Line Langager Anderson has lived with severe ME since April 2020. This was after a head and neck injury worsened her condition. She’s based in Denmark, and currently living at the care facility Arbejde Adlers Hus.

    Threatened with forced hospitalisation in a psychiatric facility

    However, as the Canary previously detailed, when her medical providers brought psychiatrists into her care, they started threatening to detain Line in a psychiatric hospital.

    In particular, the psychiatrists had attributed her severe ME/CFS symptoms to ‘psychosis’. They began forcing Line to take the antipsychotic medication olanzapine. At the same time, they started withholding the medication Line used to treat her pain symptoms.

    What’s more, Line’s medical team have also tried to prescribe numerous extremely dangerous non-evidenced-based treatments for ME patients. This included the notorious graded exercise therapy (GET), and electroconvulsive therapy (ECT). Either treatment could put Line at immense risk.

    The clinician overseeing Line’s care has even admitted how they have no experience or knowledge treating ME patients. Despite this, it hasn’t stopped them setting an ultimatum for Line’s recovery. Specifically, Line previously told the Canary that her medical providers were ignorant that the disease has no curative treatment. As a result, they had given her three weeks to:

    accept and try treatment with this medication. If I do not get out of bed during this period, they claim that I am unmotivated and a danger to my own health, thereby justifying forced hospitalization.

    ME and long Covid community come out in force

    Given the dire urgency of Line’s situation, a group of people from the ME and long Covid community started a petition. This called on the Copenhagen care facility to halt Line’s imminent forced detention in a psychiatric hospital.

    The group wrote that:

    Involuntary hospitalisation in a psychiatric ward will cause Line harm through:

    • Harsh hospital conditions of extreme light/noise/chemical fumes, which are like torture to someone enduring Severe ME.
    • This extreme exertion will lead to compounding PEM (post-exertional malaise, the cardinal symptom of ME) which may take months to recover from or cause permanent deterioration in her baseline function.
    • The effects and side effects of unnecessary antipsychotic medications and withdrawal of beneficial ME medications.
    • The combination of mental distress and severe PEM could undermine her ability to digest nutrition and thereby lead to a life threatening situation.

    The letter also pointed Line’s medical team to a suite of scientific information and resources on severe ME/CFS. It has now been signed by more than 4,000 people, and multiple “internationally renowned ME organisations” have gone on record backing the plea.

    So far however, this hasn’t been enough – as Line’s medical team continue to dismiss her needs as a severe ME patient. Crucially, they haven’t ceased the threat of psychiatric detention.

    Psychiatrists dismissing international patient community and experts on severe ME/CFS

    Now, the group have posted an update on Line’s petition. They said that:

    Last week the Severe ME Advocacy Group heard from Line in Denmark that the psychiatrists had dismissed our letter as being from “uncredible sources”.

    Line added “They are using it against me, furthering their belief that I am delusional”. It might be suggested that, having been provided with an array of links to scientific evidence of the biological basis of ME by a senior UK doctor backed by more than 4000 other people from all over the world, Line is not the person to whom “delusional” should be applied.

    In short, the psychiatrists involved in Line’s care at Arbejde Adlers Hus are putting Line’s life at serious risk. Not only have they repeatedly ignored Line’s knowledge from living with her condition, now, they’re also dismissing patients, international experts, advocates, and a wealth of scientific evidence.

    Of course, it wouldn’t be the first case of psychiatrists intransigently refusing to listen to severe ME/CFS patients. The Canary has reported on numerous instances of similar abuse and neglect resulting in psychiatric detention. This includes severe ME patient Carla Naoum in West Middlesex Hospital – who the group even referenced in their letter to Line’s medical providers.

    Line is now faced with no choice but to seek legal advice – so is raising funds to consult a lawyer. If you are in a position to contribute, you can do so here.

    It should never get to the point where a seriously chronically ill patient has to turn to a lawyer to fight for safe medical care. However, all across the world for severe ME patients, this is far too often the case. Ultimately, it’s because arrogant medical professionals consistently refuse to listen. And unconscionably, this continues to be to tragic catastrophic consequences for people living with this awful disease.

    Featured image supplied

    By Hannah Sharland

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) threw close to half a million pounds at defending its dangerous plans to deny hundreds of thousands of claimants their vital health-related benefits. This was over the Conservatives’ proposed work capability assessment (WCA) reforms – which would see more than 450,000 disabled people lose around £416 a month in Universal Credit.

    Source

    This post was originally published on Canary.

  • It hasn’t even been a week since Rachel Reeves’ announcement on Department for Work and Pensions (DWP) disability benefit cuts – that she’d pre-announced to the shitrag Sun – and which turned out to be: a non-announcement. It was only to be expected that the right-wing rumour-mill would spin into action to launder the DWP plans Reeves’ should have declared to Parliament and the public…

    Source

    This post was originally published on Canary.

  • Disabled witnesses and people with lived experience of mental health conditions giving evidence to the Assisted Dying Bill committee have spelled out to members how the bill moving to legalise assisted suicide for terminally ill patients has “fundamental flaws”. In particular, a witness speaking to issues around coercion and eating disorders posed an imperative and soul-searching question to the…

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    This post was originally published on Canary.

  • Just as the Labour Party government is tabling reforms and cuts to Department for Work and Pensions (DWP) benefits like PIP, a new report by a think tank has exposed that, far from being a drain on public finances, health and disability-related welfare is actually good for both the claimant and society more broadly. For 3.5 million people in the UK, DWP benefits like Personal Independence…

    Source

    This post was originally published on Canary.

  • In (another) last-minute U-turn, sponsor Kim Leadbeater has finally agreed to hear from a representative of a Deaf and Disabled People’s Organisation (DDPO) during an oral evidence session for her controversial Assisted Dying Bill, currently making its way through Parliament. However, DDPO’s feel this fig leaf at the final hour is too little, too late in a parliamentary process that has…

    Source

    This post was originally published on Canary.

  • A new deafblind UK centre for education and research based at Birmingham City University (BCU) has been hailed as “life-changing” and a “game changer” in the fight to address the “frustrating and overwhelming isolation” felt by many deafblind people. The centre, which is the first of its kind, will connect researchers, practitioners, and people living with deafblindness to increase knowledge…

    Source

    This post was originally published on Canary.

  • Chronically ill and disabled Universal Credit claimants saw their health deteriorate across the course of 2023 – despite receiving the former Conservative government’s flagship cost of living payments. In other words, the extra payment failed to enable recipients to maintain their health amidst the spiralling rise in living expenses. Crucially, the Department for Work and Pension’s (DWP) own…

    Source

    This post was originally published on Canary.

  • Let’s play a game of statement spot the difference. The first: The other proclaims how “the state pays” ‘X’ amount: Then, it emphasises that for the same sum: Figured out the distinctions between them yet? Hint: there basically isn’t one. If anything sets these two captions apart, it’s 80 or so years of lapsing time, and the North Sea. Statement one is a Daily Mail headline from 13…

    Source

    This post was originally published on Canary.

  • I must admit, I have been somewhat distracted by the chaotic events unfolding not just across the pond, but also the dodgy ceasefire deal that doesn’t seem to matter in the slightest when the colonialist outpost of Israel fancies killing some more children for no other reason whatsoever than the fact they’re not Israeli. It’s not hard to become distracted by the world’s richest moron throwing a…

    Source

    This post was originally published on Canary.

  • The first committee meeting of Kim Leadbeater’s assisted dying bill confirmed what many disabled people already knew – and have been highlighting from the beginning. Specifically, that the bill and its proponents have disgracefully dismissed and sidelined disabled voices at every turn.

    This was once again painfully evident when members overwhelmingly voted to exclude a leading disabled activist as a witness in its upcoming sessions. In particular, among other amendments, they shot down one which sought to include Ellen Clifford, who this January momentously took on the Department for Work and Pensions (DWP) in the High Court over its dangerous plans to reform the Work Capability Assessment – and won.

    Assisted dying bill: a stitch up from the start

    On 21 January, the Public Bill Committee for the Terminally Ill Adults (End of Life Bill) sat for the first time.

    Including herself, Leadbeater has appointed 14 supporters of the bill to this committee responsible for scrutinising it.

    These include health minister Stephen Kinnock and justice minister Sarah Sackman. Six other Labour MPs who supported the bill will join them. There’s also two Conservative MPs, two Liberal Democrats, and one Plaid Cymru MP that backed it as well.

    The remaining nine – six Labour, two Conservative, and one Liberal Democrat – opposed the bill at second reading.

    Immediately, it’s clear the weighting of the committee is heavily pro-assisted dying from the get-go. Now, it’s also already apparent that this is biasing the evidence-gathering process.

    Snubbing a spot for a leading disabled activist

    During this first session, it was quickly obvious that Leadbeater was moving to mothball scrutiny and genuine challenges to her bill.

    She started by bringing a motion to make discussions on the proposed witness list private. In other words, she wanted to conceal this part of the meeting from the public. Naturally, the pro-assisted dying stacked members passed this through. It means that all matters pertaining to why Leadbeater selected the witnesses she has, happened behind closed doors.

    To start, the committee will take oral evidence from around 42 witnesses during three upcoming sessions this January. At the time of writing, the committee has not yet published the witness list on the bills page – so we don’t currently know who this will include.

    However, we do know who this won’t include already – and that’s legendary Ellen Clifford:

    Specifically, Labour MP Naz Shah brought a series of amendments to the witness list. One of these was to remove Irwin Mitchell partner and solicitor Yogi Amin from the line-up and replace him with Clifford.

    Not a surprise over Assisted Dying

    Predictably, the committee shot the amendment down with a resounding clamour of “no’s”. Evidently, fresh from her High Court win for disabled people’s rights, Clifford’s tenacity against the DWP has the pro-assisted dying proponents anxious to avoid her holding their feet to the fire in an evidence session on parliamentary record for all to see.

    Of course, it’s also hardly surprising from a committee make-up that already failed to include a single disabled MP that voted against the bill. Moreso when you take into account that many of its members support the bill as is. And add to that, that some want to water down its so-called safeguards even further, and you have the recipe for more disastrous sidelining of disabled voices.

    Effectively, like Leadbeater, they see little wrong in a bill with a swelling litany of issues. This is despite the fact that every single DPPOs – all 350 – has opposed it from the start. That mere fact alone should be telling enough.

    Moreover, it’s obvious that Leadbeater and the largely pro-assisted dying panel would be reticent to remove Amin. The solicitor has supported a number of high profile court cases seeking to legalise assisted dying – most recently in 2018.

    An unbalanced line-up

    There were other witnesses the committee snubbed in Shah’s amendments as well. This included the Royal College of Psychiatrists (RCP). This was because the committee considered that the General Medical Council (GMC) and the British Medical Association (BMA) covered its remit.

    As the Canary’s Rachel Charlton-Dailey pointed out, that wouldn’t have anything to do with psychiatrists majority concerned existing ‘safeguards’ on consent are woefully inadequate where coercion comes in:

    Arguably though, it’d be better to include mental health advocates with lived experience over the RCP. Certainly, it’d be a shameful oversight if the committee leaves out people living with mental health conditions who can directly speak to issues around coercion firsthand.

    Leadbeater has since walked back on this decision to leave the RCP out. She has now added the RCP to the witness list. Naturally though, not without making a dig at people who oppose the bill:

    The committee will still have to agree to this at a future session.

    Ignoring chronically ill and disabled voices… again

    It also looks to be the case that Leadbeater hasn’t included any experts from Canada either.

    However, aside from spurning Clifford’s inclusion, the other most alarming revelation was that the witness list won’t be remotely balanced. Conservative MP Danny Kruger drew attention to this. He highlighted that there were 38 witnesses he considered supporters of the bill, and only 20 opposed.

    He also noted that of the eight witnesses from “foreign jurisdictions”, all support assisted dying within their own countries. Multiple members weighed in here to defend the decision. They opined that it apparently only made sense to have people involved in the ‘successful’ operation of assisted dying bills elsewhere to make Leadbeater’s legislation “workable”. That is, they had no interest taking evidence from people and communities assisted dying laws have harmed and put at risk elsewhere.

    Ultimately, Leadbeater and the committee’s choice to leave Clifford out speaks volumes. Despite the spiteful quip in her post about the RCP U-turn, Leadbeater is right about one thing – her list isn’t enough. Not when it’s looking likely that she has deliberately chosen not to include even a single representative from a DDPO on it.

    Contrary to Leadbeater and her supporters repeated boasts to inclusivity, the committee proceedings are already shaping up to be anything but. After MPs voted it through second reading – it was clear Parliament was ignoring chronically ill and disabled people’s voices. Now, this whole sham scrutiny process is showing just how little MPs will listen to them when it really comes down to it.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • It’s 2025, but the abuse of people living myalgic encephalomyelitis (ME/CFS) continues unabated. Already, less than a month into the New Year, a person living with severe ME – this time in Denmark – has reached out to the Canary with her appalling and urgent situation. Specifically, this is that her medical team is trying to forcefully detain her in hospital. Predictably, they are doing so after falsely labelling her severe and debilitating symptoms as psychiatric in origin.

    In an heartbreakingly familiar story for severe ME patients worldwide, 26-year-old Line Langager Anderson faces the prospect of this involuntary hospitalisation permanently damaging her health. And there’s the very real and frightening possibility it could genuinely put her life at risk.

    However, it hasn’t happened – yet. There’s still time to stop her medical providers from hospitalising her, but she needs people to act fast.

    ME/CFS: another person with severe ME needs your solidarity

    Myalgic encephalomyelitis (ME/CFS) is a debilitating condition often triggered by viruses. It can rival cancer and late-stage AIDS in severity.

    Specifically, it’s a chronic systemic neuroimmune disease which affects nearly every system in the body. As a result, it causes a range of symptoms that hugely impact patients’ daily lives. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    Line Langager Anderson has lived with severe ME since April 2020. This was after a head and neck injury worsened her condition. She’s based in Denmark, and currently under the living at the care facility Arbejde Adlers Hus.

    Psychiatrist hospitalisation threats

    On her Facebook, Line has posted about her ongoing ordeal. Unsurprisingly, the current hospitalisation threats began when her medical providers brought psychiatrists into the mix. Predictably, these appear to have no formal training or understanding of severe ME and its common comorbidities.

    In the first visit, she described how psychiatrists entered her respite care room without masking, and that:

    They refused to go and repeated 30 times in a row that they will “MOTIVATE ME TO STOP MY MEDICATION” “DESPITE MY PAIN” AND TOLD ME TO STOP USING MY NECKNECK THAT KEEPS ME ALIVE AND GIVES ME FREE AIRWAY

    Line likely has craniocervical instability (CCI) – which involves increased mobility at certain junctions in the neck. It’s a common co-occurring condition with ME.

    However, she explained to the Canary that she has been unable to get a diagnosis in Denmark. Specifically, there are no specialists in the country who can diagnose or treat it. She told the Canary that:

    My neck is incredibly unstable but I’ve been too sick to travel to Barcelona for imaging. We did speak with dr. Oliver about it and he was willing to do both diagnosis and surgery in one visit if I could manage fundraising and travelling. I have no-one to fundraise for me so I’m stuck in a country where not a single doctor acknowledges CCI. My neck collar helps me breathe freely and swallow— two things I can’t do well without wearing it.

    Alongside this, they’re attempting to force Line to take the antipsychotic medication olanzapine – against her wishes. However, ME patients are often more susceptible to the side effects of antipsychotic medications like these. It means that they can actively harm their health further. And Line has pointed out, this could trigger a serious PEM crash from which she may not recover back to even her current dire baseline.

    Worse still, they’re doing so while refusing her medication that Line knows helps her ME symptoms. She explained to the Canary that:

    They intend to remove my pain relief and everything else that helps me, replacing it with antipsychotics, even though I am not psychotic and have actually been slowly improving over the past year at Arbejder Adler Hus. Psychiatry is dissatisfied with the slow pace, even though there is no cure for ME.

    Psychologising her ME/CFS – an all too familiar story

    Ultimately, the problem is that Line’s medical team aren’t actually treating her as a patient living with ME. Line said that the clinician overseeing her care:

    even told me that she does not know how to manage ME (despite my having sent numerous useful, scientific articles). This fact alone should make the case clear: they are treating without professional competence.

    Instead then, they’ve started psychologising her symptoms. Line shared some of the notes her doctors had made about her. Revealingly, they wrote that:

    her condition can be aligned with psychosis, which requires treatment and threatens her health. She is informed about the type of medication, olanzapine, with a starting dose of 2.5 mg once daily, to be increased after three days to 5 mg once daily.

    The expected effect is that the patient will become less sensitive to sensory stimuli that affect her functional level and reduce the degree of pain upon touch. This will help her gradually improve her basic daily functions. Improvement will be assessed when her functional level changes: eating, standing up, etc.

    After a motivation period of 2–3 weeks, if the patient’s functional level is unchanged, hospitalization will be considered.

    Moreover, from the start, her medical providers seemed to draw from the biopsychosocial (BPS) model of ME. For one, Line expressed how they’d already previously:

    suggested electroconvulsive therapy and forced “rehabilitation” with GET [graded exercise therapy] and CBT [cognitive behavioural therapy].

    Of course, as the Canary has repeatedly highlighted, GET has actively harmed countless ME patients. Meanwhile, doctors have long recommended CBT under the premise ME patients can “think themselves better”. Both are borne out of the BPS model that trivialises a physiological disease as psychological. It’s why the UK’s updated National Institute for Health and Care Excellence (NICE) guidelines on ME have removed GET as a treatment, and downgraded CBT. Notably though, this was only after concerted campaigning from ME patients – many who’d experienced this firsthand – carers, and allies.

    Controversial electroconvulsive therapy

    Electroconvulsive therapy (ECT) isn’t an evidence-based treatment for ME either. The controversial process literally involves triggering small seizures in patient’s brains. If that sounds problematic, that’s because it very much is – the treatment can cause irreversible brain damage in patients. Psychiatrists sometimes refer patients with severe depression for the treatment. However, what’s significant is that there’s a long and disturbing history of clinicians forcing it on mental health patients, either without consent, or through coercive means.

    None of that is to even mention the immense risk ECT poses to severe ME patients. While there’s little research into its impacts on people living with ME – an issue in itself – it’s plausible to imagine it could be extremely harmful.

    People living with severe ME can sometimes experience seizures. Maltreatment of 24-year-old Carla Naoum in West Middlesex hospital has led to her condition progressively declining. Notably, healthcare staff removed door covers keeping the light out of her room, which seemed to trigger neurological symptoms presenting as tonic clonic seizures.

    Therefore, there’s no telling how much damage actually physically inducing one might do.

    What is clear is that there is no scientific basis for carrying out ECT on ME patients. At best, it’s medical negligence to prescribe a treatment without a body of sound scientific research on its impacts on a patient group. At worst, it’s unconscionable medical malpractice, profoundly unethical, and calls into question the professions’ claimed Hippocratic Oath to “do no harm”.

    And naturally, a dominant thinking in the medical profession that dismisses ME as psychological will also invariably mean that ECT will be foisted on some psychologised ME patients too.

    And indeed it has. An article from the Cosmopolitan previously detailed this very experience for a young woman named Courtney in the US. It described how after nine rounds of ECT, she’d suffered permanent memory loss. Unsurprisingly, the treatment did nothing for her ME – if anything making it worse.

    Essentially then, Line’s medical team has repeatedly tried to prescribe dangerous, non-evidence-based treatments. And we’ll be clear – forcing Line to undergo these would constitute serious and disgusting medical abuse.

    Unfortunately, that has hardly been the end of it.

    Putting her life at risk

    Now, Line has been told she has two to three weeks to:

    accept and try treatment with this medication. If I do not get out of bed during this period, they claim that I am unmotivated and a danger to my own health, thereby justifying forced hospitalization.

    Of course, all the while, this ultimatum and psychiatry’s repeated visits threatening this, has been worsening her health too. Line has also detailed some of the effects the medical maltreatment has been having on her already.

    On 16 January, she wrote how:

    Psychiatry showed up again. Was forced to talk for ten minutes until my mouth started going paralyzed. Am crashed after their last visit and yet again left to myself without a side sitter.
    I was clearly formulated how much improvement I have experienced on the medication that is recommended for ME. The fact that I process grief and anxiety immediately without hesitation and not being depressed.

    Yet I’m now put in limbo where a person has to come in EVERY day and offer me antipsychotic medication. If I say no, I can still be forced to be admitted.

    I now have to accept that I’m going to be completely drugged and zombie-like from tonight. It’s the only way around their sick performances.

    Moreover, as Line has herself harrowingly had to articulate, involuntary detention on a psychiatric ward could genuinely kill her. She expressed to the Canary that:

    ME worsens with all forms of strain. What they intend to subject me to is so barbaric that the word torture is not sufficient. Where are our rights as severely ill patients in Denmark? This could kill me. That is not an exaggeration.

    Tragically, she’s not wrong – it isn’t an exaggeration.

    This is what happened to Sophia Mirza – the very first person to have ME/CFS recorded as her cause of death in the UK. It was after NHS doctors sectioned her under the Mental Health Act and incarcerated her in a mental health hospital without even basic nurse care. It caused her severe ME to worsen, and ultimately led to her death in 2005.

    Other severe ME patients have died due to catastrophic hospital care failures too. The 2024 inquiry into the death of Maeve Boothby-O’Neill threw this into the spotlight.

    Time to step up and stop this

    Of course, the long-term and prevalent stigmatisation and psychologisation of ME has invariably led to healthcare systems across the globe forcefully hospitalising severe ME patients in this way. In short, it has long been going on – and healthcare systems the world over continue to neglect, abuse, and gaslight severe ME patients – with sometimes fatal consequences.

    Within the ME community, anecdotal accounts of this experience abound. The Canary has covered numerous incidences of this in just the past year alone, such as Carla, and 26-year-old Katiana in Greece.

    However, there’s been no attempt by states to understand the number of ME patients that public health systems have disastrously harmed like this.

    At the end of the day, public health systems and governments don’t record this information. There’s therefore no reliable statistics available on how many severe ME patients healthcare professionals have wrongly detained in hospitals under harmful psychiatric pretences.

    Now, Line’s involuntary hospitalisation is imminent – currently just a few weeks away if her doctors fail to listen to her. However, people in the online ME community have once again stepped up to stop this from happening.

    A group has put together a letter to Line’s doctor to urge them to change course. They now need as many people as possible to sign it. You can add your name here.

    Line told the Canary that the aim is to make sure:

    the psych ward knows that all eyes are on their cruel treatment.

    She expressed that:

    I’m sure things will improve with enough voices speaking up for justice.

    In other words, if enough people speak out, it could give pause to the medical team in Denmark. Crucially, the letter has highlighted a number of resources for Line’s medical team to engage with to inform themselves of the proper care she requires.

    In October, the Canary wrote how:

    Katiana cannot become the next Maeve.

    Here we are again. Once more, Line must not become the next Maeve either – so it’s now vital that everyone who can speak out does so again.

    Feature image supplied.

    By Hannah Sharland

    This post was originally published on Canary.

  • Well, Donald Trump’s inauguration speech was a shit show wasn’t it?

    Whilst Trump declared he wanted to be known as “peacemaker and a unifier” his speech of course said otherwise.

    In amongst declaring that the Gulf of Mexico would be renamed the Gulf of America, that the US would only recognise two genders, and announcing a Mars plan that almost made Elon Musk jizz himself into a coma, was something equally as sinister that could be easily missed.

    Trump doesn’t just hate nonbinary Mexicans, he also wants disabled people dead

    Okay he didn’t say that specifically, but he came very close to it. Just a few minutes after announcing that anyone who lost their job in the military because they refused to be vaccinated against Covid would reinstated and back paid, he dealt an unusually subtle blow to disabled people

    Right in between declaring he’d take back the Panama Canal and that they’d go to fucking Mars was this:

    We will end the chronic disease epidemic and keep our children safe, healthy and disease-free.

    Of course there’s something glaringly obvious here, you can’t “end” chronic illness, because the clues in the name – they’re chronic. You can however deny support, make it harder for disabled people to get treatment, and actively work to endanger them.

    So how is Trump planning to “end chronic disease”? Well it sure as fuck ain’t through support and funding research. As always, Trump didn’t elaborate on his actual plan or concept of a plan for this. But his previous work and pledges give us a pretty clear picture and either way it’s gonna be a shit old time for disabled people in America, again.

    Judge Trump by his record

    Trump’s own record of wanting to deny children disability benefits and severely reduce disability benefits speaks for itself. But wait, there’s more.

    Project 2025, which Trump denies having anything to do with yet attempted to enact 64% of it’s 2016 policies, has some particularly nasty ideas for people with disabilities and chronic conditions.

    The biggest of all is that it wants to put “time limits or lifetime caps” on Medicaid, which would kick low income people off their health insurance after an arbitrary amount of time. This means the poorest disabled people would be forced to skip, delay, or all out stop their potentially life saving treatment.

    On top of this it also wants to make it easier for drug companies to boost the prices of medication by repealing the Inflation Reduction Act which caps medication costs and makes vaccinations free for those over 65 and with certain disabilities. This means some medication could rise by $4,000 annually and risk not being able to vaccinate themselves against things such as shingles and the flu.

    Thankfully though Trump isn’t operating alone. Surely someone level headed will be in charge of the Medicare and Medicaid.

    Oh wait it’s fucking Dr Oz off the telly, the guy who claimed there was arsenic in apple juice.

    The real threat to disabled lives

    Okay, at least the health secretary isn’t a complete conspiracy theorist. Nah wrong again, it’s Robert F Kennedy Jr, he of brain worms and claiming vaccines caused autism fame. He also believes chronic illness only originated in the 1980s.

    In November he unveiled the Make America Healthy Again plan, because of course it’s called that. It’s basically all food is poison, you cant trust medication, and instead we should all be drinking raw milk.

    I wish I was exaggerating here.

    As well as firing all the actual nutritional scientists from the health agency, he thinks all food is “poison”. He’s however, bizarrely against vegetable oils and thinks we should go back to cooking with saturated animal fats. He also thinks kids shouldn’t be eating grains (for some reason) and that we should all be drinking raw milk, which has been linked to the recent bird flu outbreak.

    Big surprise, brain worm guy hates medication

    RFK Jr is also – big surprise – massively against taking any types of medication. During campaigning, he pledged to criminalise SSRIs and Adderall. It’s okay! It’s not like these are drugs which many people rely on to live.

    He is however a massive believer in alternatives to drugs. On Twitter he said the FDA had waged “war on public health”. He then accused the agency of “aggressive suppression” of anything that “advances human health and can’t be patented by Pharma”. This included but is not limited to sunshine (yes really), hydroxychloroquine (which the FDA does regulate and is patented), ivermectin (again regulated and patented), vitamins (yep you guessed it), exercise and psychedelics.

    He also of course, thinks you shouldn’t trust the water supply, because – of course he does.

    Drugs are bad kids, but not those ones

    If hydroxychloroquine sounds familiar to you, that’s because it’s the drug Trump, RFK Jr and many others started touting as a cure to Covid.

    What it actually does is prevent malaria and help manage the symptoms of lupus and arthritis. FDA pulled the use of it for Covid due to lack of evidence, but there were also concerns about rich folk buying it in bulk and increasing the price so disabled people who relied on it couldn’t afford it.

    If RFK Jr decides to reverse the ruling, whilst stopping companies from hiking up prices, many could be at risk.

    His obsession with psychedelics is particularly troubling as there are fears he could push through dangerous drugs whilst limiting those that actually help people with mental health issues. For instance last year the FDA rejected Lykos Therapeutics’ MDMA-assisted therapy for PTSD after some of the participants in the trial participants reported feeling suicidal and even attempting suicide.

    The next four years will be life threatening for many

    While Trump may claim he wants to end chronic disease, there is no way to do this that would not spell the mass murder of disabled people.

    That’s why it felt like a punch in the gut when, during the religious section of the inauguration, was the religious section Father Francis Mann, beseeched god to

    inspire our new leaders to be champions for the vulnerable and advocates for those whose voices are often silenced.

    Because nothing says championing the vulnerable like making it illegal to be nonbinary, mass deportations, and essentially wiping out disabled people.

    I wish there was some sort of hopeful message here. But unfortunately it seems that Trump’s second term is going to be even scarier and more dangerous for marginalised people than the last one.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • Tony Slattery, the beloved actor and comedian known for his quick wit and magnetic charm, tragically passed away from a heart attack on January 14, 2025, at the age of 65. His sudden death has not only left loved ones, including his partner Mark Hutchinson, fans, and colleagues in mourning, but has also drawn attention to the alarming rise in excess deaths from cardiovascular disease (CVD) since the start of the Covid-19 pandemic.

    Covid-19 worsens pre-existing conditions, especially cardiovascular diseases

    It is common to limit Covid-19 deaths to those who pass away during the acute stage of the infection, and dismiss even these deaths by attributing them solely to pre-existing conditions. However, this perspective is both misleading and harmful. 

    The alarming rise of excess deaths since the beginning of the pandemic, especially from cardiovascular diseases, and the mountain of research now showing Covid-19 is a systemic disease that causes long-term damage to the body’s organs and systems, means acknowledging that Covid is shortening the lives of all sections of the population, especially those with pre-existing conditions.

    Tony Slattery has publicly disclosed physical and mental health problems. Has repeated exposure to SARS-CoV-2, especially in high-risk settings like comedy clubs and healthcare, exacerbated these pre-existing clinical vulnerabilities? We probably will never know.

    However, Covid-19 does not merely affect individuals with pre-existing conditions more severely; it actively worsens these conditions, particularly those involving the cardiovascular system.

    Numerous reviews

    A systematic review and meta-analysis published in BMC Medicine highlights how Covid-19 exacerbates existing health vulnerabilities, leading to increased severity and mortality.

    The study revealed that individuals with cardiovascular disease faced an odds ratio (OR) of 3.42 (95% CI: 1.88–6.22) for experiencing severe complications after contracting Covid-19. This was not simply due to their pre-existing condition but because Covid-19 magnified the underlying damage to their cardiovascular system.

    Similarly, people with diabetes experienced an OR of 2.45 (95% CI: 1.79–3.35) for worse outcomes, as the virus disrupted glucose metabolism and triggered inflammatory responses that compounded their condition.

    Covid-19 amplifies the impact of these illnesses by attacking the endothelium, the inner lining of blood vessels, leading to inflammation, clotting abnormalities, and reduced blood flow. These processes significantly worsen cardiovascular health, turning chronic conditions into critical emergencies.

    Even for individuals with previously stable heart disease or diabetes, the virus creates a cascade of complications that accelerates health deterioration.

    These findings underscore that Covid-19 is not just a risk to those with existing conditions but a direct driver of their worsening health. The virus’s impact goes beyond the acute phase of infection, leaving lasting damage and contributing to long-term health decline in vulnerable populations. Recognising this dynamic is essential to addressing the broader consequences of the pandemic.

    An exponential increase in excess deaths from cardiovascular disease across all age groups

    Tony Slattery was known to be an avid reader of medical journals, and the preeminent publication in this field, the Lancet, has sounded the alarm on excess deaths from cardiovascular diseases as a result of the ongoing pandemic.

    Recent data published in The Lancet has revealed that excess deaths in the UK have persisted since the pandemic began, with cardiovascular diseases playing a significant role. According to the UK Office for National Statistics (ONS), there were 44,255 more deaths than expected in 2022, with an 8.6% rise continuing into the first half of 2023.

    Middle-aged adults aged 50–64 saw a staggering 33% increase in deaths involving CVD during the 13 months ending mid-2023. Deaths from ischaemic heart diseases (up 44%), cerebrovascular diseases (up 40%), and heart failure (up 39%) were particularly pronounced in this group.

    However, adults aged 65 and over also experienced elevated mortality, with a 9% rise in excess deaths from all causes. Notably, cardiovascular deaths in private homes for this group rose by 27%. Tony Slattery, who had just turned 65 in November 2024, highlights how these trends span across age groups.

    Young adults are not immune

    The data also shows that even younger adults are not immune: cardiovascular deaths among those aged 25–49 were 11% higher than expected during the same period. 

    The Office for National Statistics (ONS) recently revised its method for calculating excess deaths, using a model that incorporates population size and ageing trends instead of the five-year historical average. While the new methodology aims to improve accuracy, it has reduced previously reported excess deaths by two-thirds.

    For example, excess deaths for 2022 were revised down from 31,442 to 10,994. Critics argue that this change, while potentially valid for long-term modelling, risks obscuring the true impact of Covid-19 in future analyses.

    Carl Heneghan, director of the Centre for Evidence-Based Medicine, and Tom Jefferson, a senior associate tutor at Oxford University, have voiced concerns about the lack of transparency. They noted that large adjustments were categorised under vague labels like “other changes,” raising questions about whether these revisions might downplay the continued toll of the pandemic.

    Covid-19’s long shadow on heart health

    The British Heart Foundation (BHF) emphasises that Covid-19 is not just a respiratory illness but a vascular disease with long-lasting impacts on the circulatory system. The virus damages the endothelium, the inner lining of blood vessels, leading to inflammation, abnormal clotting, and reduced blood flow. These effects can trigger a cascade of cardiovascular complications:

    • Heart attacks and strokes: Covid-19 patients are more than twice as likely to suffer a heart attack or stroke compared to those who were never infected. Hospitalised patients face four times the risk.
    • Blood clots: Severe cases significantly increase the likelihood of blood clots in major arteries, potentially causing fatal complications such as pulmonary embolisms or strokes.
    • Heart damage and failure: Covid-19-induced inflammation and oxygen deprivation strain the heart, leading to long-term damage. A 2022 study in Nature Medicine found that individuals who had Covid-19 were 72% more likely to develop heart failure within a year of infection, even without pre-existing conditions.

    Covid-19 has also been linked to myocarditis, irregular heart rhythms, and persistent high blood pressure, compounding risks for those with chronic conditions like diabetes or hypertension.

    A healthcare system under strain

    As the pandemic persists into its fifth year, the UK healthcare system faces unprecedented pressure. Long Covid has had a particularly devastating impact on healthcare workers: a 2024 report found that 10% of NHS staffapproximately 122,000 people – suffer from long Covid, with symptoms such as fatigue and breathlessness impairing their ability to work. This has exacerbated staff shortages, leaving the NHS struggling to meet rising demand.

    Waiting times for routine screenings and specialist consultations have reached record highs, with some patients waiting over a year for cardiology appointments. Emergency departments are also overwhelmed, with delayed treatment contributing to poorer outcomes for acute illnesses, including heart attacks and strokes.

    The pandemic has also led to increased reliance on healthcare services, as individuals dealing with the long-term effects of Covid-19 or delayed diagnoses for chronic diseases seek medical care. This overburdened system has made it harder to address the surge in cardiovascular disease, leaving preventable deaths on the rise.

    Comedians and Covid-19: a sector hit hard

    Tony Slattery’s death also highlights the unique vulnerabilities faced by entertainers and others who work in crowded, poorly ventilated venues. Comedy clubs and theatres are often hotspots for airborne diseases like Covid-19. Without adequate safety measures, these venues can become high-risk environments.

    The entertainment industry, particularly live performers like comedians, has been significantly impacted by the pandemic. Some comedians have tragically succumbed to Covid-19 or related complications:  

    • Joe Luna: the comedian, known as Joe El Cholo, passed away in November 2020 due to complications from Covid-19 at the age of 38.    
    • Jethro (Geoffrey Rowe): the British comedian died in December 2021 after contracting Covid-19, at the age of 72.    

    Additionally, some comedians have publicly shared their struggles with long Covid, detailing prolonged symptoms that have affected their ability to perform and work. 

    Clean air protects those who make us laugh

    To protect performers and audiences alike, public venues must prioritise clean air. This includes installing HEPA air filtration systems, ensuring proper ventilation, and encouraging the use of high-quality masks during surges of airborne illness. On-site molecular testing for Covid-19, which provides fast and accurate results, should also be standard practice in these settings.

    Clean air is not just a Covid-19 mitigation measure – it is a public health necessity. Reducing the transmission of respiratory viruses will help lower the overall burden on healthcare systems, improve cardiovascular outcomes, and protect vulnerable populations.

    Tony Slattery’s sudden passing is a stark reminder of how Covid-19 has reshaped public health. While we may never know whether SARS-CoV-2 was the direct cause of his heart attack, the evidence is clear: Covid-19 exacerbates vulnerabilities and compounds risks, shortening lives across all demographics.

    The pandemic has shown us that health is interconnected. Pre-existing conditions are not explanations; they are amplifiers of the virus’s deadly potential. Addressing the systemic issues – through clean air, healthcare investment, and accurate public messaging – can help prevent further unnecessary deaths and honour the legacies of those we have lost.

    Featured image via the Canary

    By Protect the Heart of the Arts

    This post was originally published on Canary.

  • With Donald Trump’s election in the US, a wave of uncertainty has swept the globe: for the environment, gender, war, and health. However, the undermining of women’s rights has become a major theme throughout the presidential campaign. As we lurch further into climate breakdown and instability, the further society sways to the far right – just as the world did after the Spanish Flu pandemic in 1918. A place where simple answers are easier to stomach than a complex reality, the vulnerable are seen as disposable, and there’s always someone else to blame – not least, in this context, with long Covid.

    Here we are focusing on laying the blame on women; the blame on mothers. Austerity, a ragged and inflexible NHS, a pandemic, an unfit SEND system and policy changes have led to an increase in false safeguarding accusations – almost always against the mother. Nevertheless, the framework and systemic tendency for medical misogyny is rooted in the beginnings of medicine. It is a conservative, top-down, and authoritarian structure built on strong foundations of patriarchy and patrimony.

    The Cerebra Report (2023) by Clements and Aiello found allegations of Fabricated Induced Illness (FII) against parents of disabled children were widespread, often causing devastating and lifelong family trauma. It’s one thing to go for help and not find any medical care. It’s another to be blamed for your child’s disability and illness. Clements discovered parents with disabilities were four times more likely to face accusations compared to non-disabled parents.

    The pandemic continues to leave in its wake a monstrous wasteland of chronic illness. One of those hydras is long Covid.

    Long Covid: nothing new under the sun

    In the early days of Covid, we were reassured that children were not affected, and post-acute viral disease was not even mentioned. Yet, these were simple answers for a complex situation. In March 2024, the ONS found that over 111,000 children have long Covid: a devastating, multi-system disease. Denial and the desire for normalcy have led to more families facing traumatic safeguarding referrals in an effort to divert blame and avoid institutional responsibility.

    This is nothing new in the world of myalgic encephalomyelitis (ME/CFS), disability, and chronic illness. The LeAP research program found social care policies in the UK assume parental failings as a default position. One in five families with a child with ME faced false claims resulting in child protection involvement. Families with children with long Covid now find themselves inheritors of a precarious and dangerous system.

    But how has this become so ubiquitous in medicine that it barely registers as a concern for healthcare professionals? Again, we come back to systemic problems: medics overstretched and alienated from patients; education that rarely covers post-acute viral illness; a protective and anti-whistleblower culture; a root bias towards acute illness, and an ingrained attitude denigrating ME and many chronic illnesses medicine deems unexplainable.

    Another key reason for this growing problem is psychiatric trespass.

    Psychiatric trespass

    “Within the field of liaison psychiatry and psychosomatics, CFS, CFS/ME, IBS, FM, CI, CS, EI and a number of other conditions, for example, chronic Lyme disease, are bundled under the so-called “Functional Somatic Syndromes” (FSS) and “Medically Unexplained Syndromes” (MUS) umbrellas”.  DSM-5 Working Group, DX Revision Watch.

    And here is the problem.

    In courses, textbooks, and cultural assumptions, we have the pernicious belief that medically unexplained symptoms (MUS) and its other forms have psychiatric factors. Which is why professionals can be so quick to call in child protection. Because if you have a mentally disturbed mother, that child is in danger and safeguarding action is needed. With ME/CFS and long Covid often assumed to be MUS or a Perplexing Presentation (PP) it is clear there’s a growing risk to children and families.

    However, it is a blunt instrument – with the majority of all safeguarding referrals unfounded and causing untold damage. Action for ME found that 70% of cases were dropped in a year. Tymes Trust has been involved in over 140 cases; none resulted in a guilty verdict. The Cerebra Report found that 84% cases were abandoned or had no follow up. Dr. Nigel Speight, involved in over 200 cases over the last 25 years, said:

    In c.98% of all the other cases, proceedings were aborted without a court order and the case eventually closed. Some of these cases had to experience prolonged social work involvement, albeit with no real threat of removal.

    It is this wild, free-reign that psychiatry and the DSM-5 have that is so dangerous. It can claim, without evidence, any poorly understood disorder without due warranty, into psychological abnormality due to its broad reclassification of somatic symptom disorder (SSD) in the DSM-5. It’s such a vast overreach that psychologists have classed up to 23% of the population as having maladaptive thoughts connected to physical symptoms. Long Covid, ME, and other long-term illnesses can easily be given a psychiatric SSD diagnosis.

    ‘Professional’ overreach – and not just in long Covid

    In the book Cracked, Dr James Davies states:

    first we named a so-called medical disorder before it has identified any pathological basis in the body. So even when there’s no biological evidence that a mental disorder exists, that disorder can still enter the DSM and become part of our medical culture.

    However, it is not just the DSM-5. ME is in the liaison psychiatry and functional somatic syndromes of a major textbook, Kumar and Clarke’s Clinical Medicine. It is no wonder why women with ME can be sectioned so easily or starved to death.

    Another way psychiatry has overreached is that the Royal College of Paediatrics and Child Health (RCPCH) have included PP and MUS as an alerting sign for FII in their guidance.

    There are fundamental issues here. One being that the RCPCH alerting signs are not derived from any peer-reviewed research. This amalgamation of conditions is increasing unlawful adverse discrimination at an alarming rate. Yet the RCPCH does not recognise the harm caused by false allegations. Even the British Association of Social Workers state in its FII Practice Guide:

    If social workers were to follow the RCPCH guidance, the proposed assessment criterion for FII is likely to cast suspicion on many families who are not harming their children, including children and young people with disabilities and illnesses that are undiagnosed.

    FII is an accepted very rare condition. Gullon-Scott and Long estimated between 53-376 cases in the UK and that the RCPCH guidelines lead to an extraordinary number of false positives.

    But it is the human story that we need to remember.

    State-sponsored trauma

    One mother with a child with long Covid and who experienced unfounded safeguarding proceedings said:

    Hearing that I was abusing my daughter because she was using a wheelchair due to fatigue and pain, and doing my own research on how to manage her symptoms after being repeatedly being gaslit by medical professionals, was devastating for both myself and my daughter. After constant fighting for care and support for her for over 18 months, I was broken and my daughter lost all remaining trust in any medical professionals, her school and all professionals

    The trauma for families cannot be understated.

    It’s more complicated than saying those with MUS and PP are mentally ill. We can see from this presentation by professor Stokes that there is an assumption of a mix of physical, psychological, and behavioural factors and how embedded the culture of patient blame is in medicine. However, this is an old, old trope – one that has delayed treatment and research for decades, especially for women, due to the prejudice that their emotional lives are caught up in their biological illnesses.

    In many ways, it is a perfect storm. The reaction to the pandemic through educational government policy has been to zealously focus on attendance. A narrative of parent blame and anxiety has been perpetuated, so the foundations do not have to be fixed. Children in schools remain unprotected from airborne illness.

    The updated (September 2024) statutory government guidance, ‘Keeping Children Safe in Education’ changed the phrase ‘deliberately missing’ education to ‘unexplainable and/or persistent absence’ in relation to safeguarding. It is another pressure point where, in the omission of policy on long Covid, there is an increased risk of unsubstantiated child protection. Schools are now expected to inform social workers for any unexplained absence.

    Long Covid and the rise of populism: blame the women, not the system

    There is a dearth of high-quality research, medical education, and specialism in long Covid. Yet we have a situation where it’s easier to point the finger at families, at women.

    We become the scapegoats, a simple answer for a complex problem – all to avoid humility in the face of responsibility.

    It is clear that we need action on multiple levels: a thorough change of medical literature and guidance to close loopholes; high-quality paediatric research, and a drastic shift in culture.

    We live in a connected world where politics, medicine, and social forces collide. We are more likely to experience pandemics because of the destruction of the environment. Yet the political response to climate breakdown and pandemic fallout has been a rise in populism. It supplies simple answers, shifts the blame game on to the individual – all to avoid institutional due diligence.

    It is no wonder that women have been caught in the crosshairs. We have become an easy target for complex problems.

    Featured image via the Canary

    By Claire Every

    This post was originally published on Canary.

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    Right-click here to download this episode (“Save link as…”).

     

    NYT: How Outlets on the Left and Right Have Covered the Los Angeles Wildfires

    New York Times (1/9/25)

    This week on CounterSpin: While the New York Times rolls out claptrap about how both “the left and the right” have ideas about causes behind the devastating Los Angeles wildfires—the right blame DEI hires, while the left blame climate change—many people have moved beyond that sort of stultifying nonsense to work that directly confronts the fossil fuel companies, and their political enablers, for the obvious role that fossil fuels play in climate disruption, and that climate disruption plays in extreme weather events. Many are also now calling out insurance companies that take folks’ money, but then hinder their ability to come out from under when these predictable and predicted crises occur.

    Would you be surprised to hear that these powerful industries—fossil fuels and insurers—are intertwined? We talked about it last year with writer and historian Derek Seidman. We’ll hear that conversation on this week’s show.

     

    19th News: Disability advocates breathe a sigh of relief at Supreme Court’s Acheson decision

    19th (12/6/23)

    Also on the show: Did you see the coverage of how people with disabilities are dealing with the California fires’ impact? Probably not, given that the place of people with disabilities in elite media coverage ranges roughly from afterthought to absent. We talked about that last year with disability rights advocate and policy analyst Ariel Adelman, in the wake of a Supreme Court case that considered dismantling civil rights protections for people with disabilities, by criminalizing the ways that we learn about whether those protections are actually real. We’ll hear that too.

    This post was originally published on CounterSpin.

  • It’s been revealed by a leading disability news outlet that the previous Conservative government tried to bury a damning report into the DWP PIP system and its failings. We only know this thanks to the tenacity of one journalist. However, the issue raises further questions about the approach of the now-Labour Party government.

    DWP PIP reforms: burying bad news

    In January 2024, Conservative ministers chose to withhold a Department for Work and Pensions (DWP) report that highlighted significant issues within the Personal Independence Payment (PIP) system. This decision occurred just days before the release of a green paper proposing substantial changes to it.

    We only know this information thanks to John Pring at Disability News Service (DNS). As Pring wrote:

    DNS has obtained copies of emails exchanged last year between ministers and advisers, which show how the minister for disabled people, Mims Davies (pictured above, left), was asked to approve the publication of four Department for Work and Pensions (DWP) research reports in January 2024.

    The unreleased report contained testimonies from disabled individuals who had undergone PIP assessments and received zero points, rendering them ineligible for support. One participant, diagnosed with ME and confined to bed for all but half an hour daily, described the assessment process as dismissive, noting that attempts to elaborate on his condition were abruptly halted.

    Such experiences left claimants feeling “broken,” “numb,” and “fuming.”

    Internal emails obtained through Pring’s freedom of information request revealed that on 29 January 2024, minister for disabled people Mims Davies was asked to approve the publication of four DWP research reports. This included the critical PIP study.

    A response on 8 February suggested delaying its release due to ongoing policy development. It cautioned that publication could “set hares running.” The final decision to withhold the report was made on 24 April, just five days before the green paper’s publication.

    On 29 April 2024, work and pensions secretary Mel Stride introduced the “Modernising Support for Independent Living” green paper. In this, the government expressed concerns over rising PIP expenditures. It also questioned the benefit’s value.

    The paper proposed making it more challenging to claim PIP and suggested replacing cash payments with vouchers or one-off grants, a move described by campaigners as a “brutal, ideological attack” on disabled people’s support.

    Deliberate timings all round

    The timing of these events indicates a deliberate effort by ministers to suppress evidence of the PIP system’s deficiencies. It would have laid cover for advancing policies that could further restrict support for chronically ill and disabled people.

    The news comes as the DWP lost a court case over ex-Tory ministers’ reforms to the Work Capability Assessment (WCA). Concerningly, the Labour government has already indicated it may go ahead with the changes, regardless.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • A research paper into myalgic encephalomyelitis (ME/CFS) has claimed that the majority of long Covid patients live with it – and that Covid-19 has exacerbated the number of people living with this debilitating illness.

    ME/CFS: a debilitating illness

    Myalgic encephalomyelitis (ME/CFS) is a debilitating condition often triggered by viruses, which can rival cancer and late-stage AIDS in severity.

    It’s a chronic systemic neuroimmune disease which affects nearly every system in the body. As a result, it causes a range of symptoms that hugely impact patients’ daily lives. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    Now, researchers have shed some light onto the effects of the Covid-19 pandemic on the number of people living with ME/CFS – and how long Covid could be related.

    A new study

    The research paper “Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis” explores the relationship between SARS-CoV-2 infection and the onset of ME/CFS. It leverages data from the RECOVER-Adult observational cohort study in the US, involving over 15,000 participants.

    The study aimed to determine:

    1. The incidence rate of ME following SARS-CoV-2 infection.
    2. The prevalence of ME in infected versus uninfected participants.

    Participants were categorised into:

    1. Acute infected: Enrolled within 30 days of SARS-CoV-2 infection.
    2. Post-acute infected: Enrolled over 30 days after infection.
    3. Uninfected: Documented negative for SARS-CoV-2.

    Exclusion criteria included pre-existing ME, hospitalisation for COVID-19, and incomplete symptom data. ME diagnosis followed the 2015 Institute of Medicine criteria, based on self-reported symptoms and survey responses.

    Are nearly ALL long Covid cases actually ME/CFS?

    Key findings from the study included:

    1. Incidence and Prevalence:
      • The incidence of ME/CFS among acute infected participants was 2.66 per 100 person-years, significantly higher than 0.93 per 100 person-years in uninfected participants.
      • The prevalence of ME was 4.5% in infected participants versus 0.6% in uninfected participants.
    2. Symptom Patterns:
      • PEM was the most common symptom, reported by 24% of infected participants.
      • Cognitive impairment, unrefreshing sleep, and fatigue were also prevalent among those with ME.
    3. Demographics and Risk Factors:
      • ME was more common among white females aged 46–65, living in rural areas, with lower educational attainment, and less likely to be vaccinated.
      • Comorbidities such as chronic pain, fibromyalgia, and autonomic dysfunction were higher among ME participants.
    4. Long COVID Overlap:
      • Nearly 89% of ME cases met the criteria for long COVID, with the majority categorised in a symptom cluster characterised by severe PEM, brain fog, and other disabling symptoms.

    What does the study show?

    This study underscores a notable increase in ME/CFS incidence post-COVID-19 compared to pre-pandemic estimates. The overlap with long COVID suggests as a minimum shared pathophysiological mechanisms. However, what is more likely – as many patients would attest to – is that long Covid quite literally is ME, just with a different viral trigger and therefore differences in some symptoms.

    The study shows that the public health threat of post-viral illness – that is, ME – has been sorely and often intentionally downplayed or ignored. This must change to protect future generations.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • On Thursday 16 January, a high court judge ruled what disabled people already knew, the Department for Work and Pensions (DWP) had acted unlawfully in their controversial plans to reform the Work Capability Assessment (WCA). However, the DWP has also revealed that the Labour Party government is planning on going ahead with the WCA changes the Tories first tabled – but it will run another consultation, first.

    Disabled activist and all-round legend Ellen Clifford took the DWP to court over a consultation which ran for just eight weeks in 2023. The department later used the evidence gathered from the consultation to make changes to the WCA, and who qualified as Limited Capability for Work Related Activity (LCWRA) – which are due to come into effect this year.

    If they come in, the plans would see over 400,000 disabled people lose around £416 a month, something which could lead to countless deaths – this is on top of the god knows how many deaths the WCA has already caused.

    The argument against DWP WCA reforms

    The DWP misrepresented the reforms as a way to give more disabled people support into work, citing figures that said 20% of people in the LCWRA group had said “would like to work at some point in the future”. Of course, they conveniently ignore the 80% who disagreed with this and that just 4% said they would be able to start work now if the right job and support were available.

    The consultation received a massive pushback from disabled people, who could see it for what it was: a cost-cutting measure designed to force people back into work and score points in the next election.

    Clifford and Aoife O’Reilly from the Public Law Project, who was acting as her representation, argued that the consultation was unlawful on many grounds.

    Firstly, the consultation did not explain that many disabled claimants impacted by the reforms would receive significantly less money and in some cases, be required to meet stringent conditions or be at risk of sanctions if they did not meet them.

    O’Reilly also argued that the primary motive for the reforms – to reduce DWP spending – had not been disclosed. She argued that the consultation had led people to believe the aim was to help people into work, without actually providing any evidence as to how they planned to do so.

    Lastly, the team crucially argued that the consultation had been unlawful as it ran for just under 8 weeks, which didn’t give DDPOs adequate time to respond. Government consultations typically run for six-to-twelve weeks.

    DWP’s own documents did them dirty

    Over the course of the judicial review, internal DWP documents revealed several damning things.

    Firstly, the DWP had not actually done any sort of impact assessment on the WCA proposals, prior to the consultation being launched.

    This is despite the fact that civil servants had, based on internal estimates, identified that almost 100,000 people would be pushed into poverty if they went ahead. There was an equality impact assessment that was done after the launch of the consultation, but that has never been published. Civil servants were also aware that the proposals would have a particularly strong effect on people with preexisting mental health conditions and suicidal ideation.

    Proposals made by civil servants on what changes to consult on were instead based on the financial benefits. Internal documents reveal that “the Prime Minister [at the time Rishi Sunak] indicated that the DWP should consult on reforms to the WCA gateway in time to score them for the Autumn Statement…”

    The narrative around how easy home working was for disabled people seemingly came out of the DWP and realised that the WCA proposals would be “perceived as purely cost-saving measures by influential disability rights groups” this led to recommendations that “a wider narrative based on modern and home working” was also developed.

    Internal documents demonstrate that DWP boss at the time Mel Stride had considered including particular proposals as part of the consultation, because it could be “useful” to play into the idea that the motivation for consultation was the importance of getting more people into work and not saving money.

    The ruling

    Mr Justice Calver ruled that the consultation was “rushed”, “misleading” and “so unfair as to be unlawful”. He described the DWP a relying upon a “false rationale”, in the consultation. It also did not inform people about the “substantial” financial loss claimants would face.

    He said that the evidence which had been presented before him:

    Strongly supported the conclusion that costs savings was at least one of the two bases, if not the central basis, on which decisions would be taken on which policies would be taken forward by the Government.

    The judge also said considered that the DWP should have made this fact clear and that “disclosure of this highly relevant fact, was required”.

    Calver ruled that the consultation time was “unlawfully short” given not only the importance of the subject but based on the fact that the DWP was also at the time running a significant consultation on the Disability Action Plan. This was particularly unexpected as the DWP had only just published the Transforming Support: The Health and Disability White Paper.

    Mr Justice Calver observed:

    The unfair burden upon vulnerable people of having to deal with a yet further consultation process at this time at such short notice cannot be overstated.

    In setting the consultation period, the Defendant ought to have had more regard to the attributes of those people who would be affected by these proposals. These were proposals which, in particular, could potentially drive vulnerable people into poverty as well as adversely affecting disabled people and substantial risk claimants who have mental health conditions and suicide ideation.

    Emotions running high after DWP WCA verdict

    Disabled activist Paula Peters, who was outside the court for the ruling, said:

    It’s been a rollercoaster of emotions today, bittersweet sadness as we remember all disabled people we’ve lost to the WCA process. Relief that justice was served and that the judge overseeing this judicial review said the WCA Consultation was radically wrong and didn’t take into account the impact on disabled people’s lives.

    In her statement outside court, Ellen said she was “overjoyed and very emotional” about the judgement:

    When I heard the judgement, I was reminded of all of those who we gave lost and all of those who we don’t know who have died – countless people who’ve died as a result to cuts and changes to their benefits and other austerity measures.

    But today Mr Justice Calver has recognised the unfair of a government consultation that deliberately set out to mislead and to disguise the potentially devastating impacts that these particular changes would have on disabled people.

    So, what about Labour?

    Well, despite the ruling the government wouldn’t legally be required to completely get rid of the DWP plans to make the lives of those subject to the WCA hell. That’s probably why the DWP has confirmed today they will be redoing the consultation.

    In a statement a spokesperson for the DWP told the Canary (and the rest of the media):

    The judge has found the previous government failed to adequately explain their proposals.

    As part of wider reforms that help people into work and ensure fiscal sustainability, the government will re-consult on the WCA descriptor changes, addressing the shortcomings in the previous consultation, in light of the judgment. The government intends to deliver the full level of savings in the public finance’s forecasts.

    This is interesting. Although they’re being upfront about it being “savings” motivated, they’re still not being transparent about how the cuts would affect people. A big takeaway is also that they’re still seemingly intent on changing the goalposts of what the descriptors will mean and who will qualify to be unfit for work.

    Disabled people are ready

    Just as many disabled activists worried, a Labour-led DWP is no better than a Conservative one.

    But disabled people are prepared to fight them on this too.

    Clifford said in her statement:

    We know the government is hellbent on attacking disabled people and essential incomes we need to survive, in order to manage the economy better than they are at the moment.

    As Peters said:

    We hope this legal victory gives disabled people across the UK hope that disabled campaigners are fighting back, prepared to take government on and bring change about”

    Speaking of the fears of disabled people facing both cuts and the Assisted Suicide Bill, Clifford said:

    This is not how any democracy should treat its most disadvantaged members; we fight on together.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • The House of Commons Public Accounts Committee’s report Support for children and young people with special educational needs published on 15 January highlights significant challenges within England’s Special Educational Needs and Disabilities (SEND) system. Notably, it outlines how funding over the past ten years has not matched demand – as the previous Conservative Party governments let the SEND system fall into a state of disrepair.

    SEND: falling apart at the seams

    As BBC News reported:

    In a highly critical report, the Public Accounts Committee (PAC) found a Send system “in disarray”, “mired in red tape, lacking funding, and failing to produce value for money”.

    An estimated 1.7 million school-aged children have special education needs and disabilities in England.

    The Department for Education (DfE) said the government was “making progress” on the issue with a £1bn investment in Send.

    Despite a 58% increase in high needs funding over the past decade, the number of children with Education, Health, and Care (EHC) plans has surged by 140%, leading to funding not keeping pace with demand. This disparity has resulted in stagnant outcomes for children, eroding parental confidence in the system.

    Key issues identified:

    • Delays in support: families face prolonged waiting times for assessments and support. In 2023, only 50% of EHC plans were issued within the statutory 20-week period:

    • Geographical disparities: access to support varies significantly by location, with some areas providing better services than others.
    • Adversarial system: parents often encounter a complex and confrontational process to secure necessary support. Notably, while only 2.5% of local authority decisions on EHCs were appealed in 2023, tribunals ruled in favor of parents and carers in 98% of these cases, indicating systemic issues.
    • Financial strain on local authorities: expenditures have consistently exceeded departmental high-needs funding, leading to substantial deficits. By March 2026, these deficits could total £4.6 billion, potentially pushing nearly half of English local authorities toward insolvency. Projections suggest a £3.4 billion gap between high-needs annual funding and forecasted costs by 2027–28.
    • Lack of clear plans: the DfE lacks a comprehensive, costed plan to address these challenges in SEND and measure progress effectively.
    • Health service delays: long waits for health services exacerbate the situation. As of June 2024, over 40,000 children had been waiting more than 12 weeks for speech and language therapy, underscoring the need for timely access to health expertise.

    What a mess

    The Public Accounts Committee summed up by saying:

    The Department of Education will be unable to make the fundamental reforms needed without a clear, costed plan to measure progress, which it is lacking. To do this it needs a clear vision of what an inclusive education would look like, better data to target funding, and to deliver a system where all those with critical roles work together. This includes the Department for Health and Social Care, who must play their part in reducing long waits for support. With more than 40,000 children waiting over 12 weeks for speech and language therapy alone as at June 2024, timely access to health expertise constitutes a significant barrier in a struggling system.

    Recommendations:

    1. Develop a clear vision for inclusive education: the DfE should articulate what constitutes an inclusive education and ensure all stakeholders collaborate effectively.
    2. Enhance data utilisation: improved data collection and analysis are essential to target funding appropriately and address disparities.
    3. Address immediate financial challenges: The DfE must formulate strategies to assist local authorities in managing current financial strains and preventing further deficits.
    4. Ensure timely access to health services: collaborate with the Department for Health and Social Care to reduce waiting times for essential therapies and interventions.
    5. Implement comprehensive changes: establish a detailed, costed plan with measurable objectives to reform the SEND system, ensuring sustainability and improved outcomes for children.

    Urgent action on SEND needed

    The Local Government Association was particularly concerned by the report. Councillor Arooj Shah, Chair of the Local Government Association’s Children and Young People Board, said:

    The Committee is right to describe the failing SEND system as an emergency, and its report reflects councils’ long-standing concerns over the need for more inclusive provision and the immense financial pressures on councils to be adequately addressed.

    It is vital the Government urgently sets out a comprehensive reform plan that ensures children and their families get the support they need and deserve.

    This must include ensuring councils on a financially stable footing, with high needs deficits written off. Otherwise, many councils will face a financial cliff-edge, and be faced with having to cut other services to balance budgets through no fault of their own, or their residents.

    Without urgent action, the report warns of a “lost generation” of children who may leave school without receiving the necessary support, emphasising the critical need for systemic reform to meet the growing demands and complexities of SEND provision in England.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • We’re now a quarter of the way through the 21st century. But from one look at the corporate media benefit claimant-bashing bile over the last year, you wouldn’t know it.

    The date marches on, some of the hacks trade places with electoral washouts – and vice versa – but the vile bigotry never ceases. If anything has changed in the past 25 years of hate-rag vitriol, it’s only that they’ve increased the ever-flowing pool of marginalised community scapegoats.

    Not that any oppressed group ever graduates from the right-wing press’s punch down portfolio. The Canary reviewed the past five years of Telegraph, Times, and Daily Mail coverage on disability benefits – and the data can attest to this.

    However, perhaps most notably of all, what became abundantly clear was quite how much the corporate media had refused to let some abhorrently ableist and grossly bigoted narratives lie. And amidst a torrent of this, the corporate press’s particularly nasty and appalling anti-fatness stigma stood out tall.

    Disability benefits and discriminatory narratives

    The benefits are a “life-style choice” purveyors, arbiters of the ‘grift’ and ‘graft’ “pull yourself up by your bootstraps” sanctimony, “workshy”, “idlers”, “shirkers” – it was all there. Across the dataset – with its 1130% rise in 2024 – the words themselves weren’t particularly prolific.

    We found the facetious idea that it’s a “lifestyle choice” in five articles. Grifter and grafter guff came up in four. That old (rotten) “workshy” chestnut cropped up across no fewer than ten pieces. Invocations of “idleness” and “shirkers”, just three and one pieces over our time period and search terms respectively.

    That these outlets used these terms in any articles at all is appalling enough. Yet, most also didn’t have to say it in as many explicit words. The implication was often plain and terrible to see in many articles regardless.

    Among the most infamous of infamous smears, there were two that really encapsulated an especially disgusting discourse that the corporate media refuses to put to bed.

    Just when you think it can’t get any worse, the right-wing regurgitators raise you: its “lazy scrounger” rhetoric.

    Again, they didn’t often voice it in quite so florid adjectives. Four counts of “scrounger” – all courtesy of the Daily Mail, naturally. Meanwhile, the Telegraph spewed out five out six of the pieces peddling “laziness” as synonymous with benefit claimants.

    Anti-fatness and benefit claimant bigotry

    Once more, there were plenty of articles where it didn’t need to say these outright for readers to know that’s what it was implying.

    Crucially, the corporate media often wrapped this up in a vastly more reprehensible narrative (hard to believe, we know). It’s one that has long been rife in the right-wing press. In tandem with these disgusting terms, the mainstream media’s output was also bristling in anti-fatness bigotry.

    That is, amidst the vicious crusade against benefit claimants, the fascistic foghorns whipped up a furore over fat people. And often, they did this in the most paternalistic, and putridly body-shaming ways.

    In October, Telegraph troll Allison Pearson penned one notable disgusting anti-fat diatribe. Hers specifically extolled the economic advantages of mass-prescribing weight-loss drugs.

    In it, she unironically advised we “as a society” should stop fat-shaming people. So herself and her hate-mongering employer especially then? Rich too when she packed the very same Ozempic – likely quid-pro-quo – promo-piece with every single hate-riddled insult and stereotype under the sun (or in the Sun for that matter).

    The oxymoronic lack of self-awareness was therefore truly off-the-charts scale staggering throughout. She literally labelled benefit claimants “useless lumps” and suggested they would “flog their free drugs on the black market”. To the likes of Pearson, people not cranking out capital are burdens to society, or criminal fraudsters – a rhetoric that has reared its head repeatedly in recent months. And why not divvy out a dose of anti-fat discrimination while she was at it – “lumps” – a deliberate double entendre that should not go unnoticed.

    We won’t reel off a list of her numerous other incorrigible insults and give them any oxygen. Safe to say that she made every attempt to punch down on fat folks, poor people, really any marginalised demographic she could swing her arm at. And the grand crescendo of it all leads exactly where you might expect. Make people fit for work – then ramp up punitive benefit conditionality.

    Every other sentence seems an ode to framing fatness as something to revile – about yourself, and in others.

    Weight loss porn in print

    Similarly, a supposedly ‘satirical’ soapbox from Telegraph columnist Michael Deacon in December had an equally vile message. Deacon pitched “high-altitude fat camps” to fix the UK’s so-called ‘obesity crisis’. Of course, his bigoted banter fits right in with the worst kinds of weight loss porn we see plastered across every nook and cranny of the media. From late-stage capitalist entertainment media’s fetishization of fat-shaming to the clickbait press’ capitalisation of it. The point is that it’s within this context that Deacon was emboldened to say this – and vice-versa legitimise it in a vicious mutually-sustaining circle.

    And significantly, what these articles have in common is the way in which they pitch fatness as some form of personal failing. Ostensibly, they’re suggesting that people are undeserving of health-related benefits by reason of their fatness. So there’s the implication too that people claiming disability benefits for conditions linked to their weight, shouldn’t be.

    If the corporate media can foist the blame for people’s poor health on individuals, then they can preserve the capitalist status quo. Simply put, it shifts the onus away from tackling the structural factors of our inequitable classist, ableist, racist, and misogynistic society. One particularly revolting headline from the Daily Mail said it all:

    Listen love, I can’t be applying for jobs day in and day out. You’ve got to have some ‘me time’: The brazen words of Jimmy, 40, to SABRINA MILLER in this shocking dispatch from the ‘disability benefits capital of the UK’ where 75 per cent are overweight

    Needless to say, it’s the ‘lazy scrounger’ narrative all over.

    Bigotry masquerading as partisan facts

    However, the blatantly bigoted tirades from corporate media’s resident click-hate merchants wasn’t the only way these outlets farmed outrage and stirred up contempt either.

    They also churned out a steady stream of analysis articles pointing out the so-called “sickness benefits bill”. Crucially, these made the connection with ‘obesity’ as a driver of increasing rates of ill health and unemployment. Some directly honed in on this, while others merely mused on it in passing. But all were part of building a despicable discourse over fatness.

    Let’s talk cause and effect here. What do you get when you have a band of right-wing media anti-fat bigots bashing the costs of “obesity-linked benefits”?

    A government in bed with Big Pharma readying to pimp claimants out for profits. Specifically, this would be the DWP doing a deal with the pharmaceutical corporate devil Eli Lilly for a weight loss drug trial. Essentially, it’s the department testing whether so-called weight-loss jabs could get unemployed claimants back into work.

    Slow-clap for Labour then. The dust barely settles before Starmer’s government seems to jump jovially aboard another astonishingly atrocious back-to-work bandwagon.

    The Times: nothing to see here…

    In fact, the Times piece was quite literally crooning over a report from healthcare analytics consultancy LCP reifying the welfare savings these drugs could foment. What the Times didn’t mention? That Novo Nordisk A/S has previously paid an author of the report – Jonathan Pearson-Stuttard – for studies into the healthcare costs of ‘obesity-related’ conditions.

    That would of course be the same Novo Nordisk that manufactures two of the major weight loss drugs in question – Wegovy and Ozempic. Additionally, Pearson-Stuttard also took fees from Pfizer outside the study. The company produces weight loss drugs too. Go figure.

    So perhaps it’s no surprise Pearson-Stuttard was plugging the “cashable savings for the welfare system” of Novo Nordisk’s drugs to the Times. Honourable mention too to former DWP coalition government Liberal Democrat minister-turned-lobbyist Steve Webb for jumping on the Wegovy-train as another author on the report.

    The so-called “worklessness crisis” narrative and weight loss jabs have been banging around together at least since Sunak launched Wegovy NHS trials in June 2023.

    Then health secretary Steve Barclay boasted the boon they could be for the economy by getting people back to work. Predictably, this – at least in part – revolved around building:

    evidence that the drugs can reduce the benefits bill

    And since then, the right-wing press and politicians have been increasingly trading on this anti-fat benefit claimant propaganda.

    Conditionality and coercion

    Yet, that has hardly been the end of it. Because, if that all weren’t insulting enough, in December, the Telegraph reported that:

    Obese people are to be given gastric band surgery on the NHS in a drive to reduce worklessness.

    So, we have both pharmaceutically suppressing appetites and surgically shrinking people’s stomachs. That’s the new Labour government’s grand plan for getting claimants back to work? There’s a stupefying scale of anti-fat bigotry on display in all this. And as the Canary’s Steve Topple has noted, it all comes down to the matter of coercion.

    He tempered that it doesn’t mean that “Labour is that dystopian – yet” that it’s going to condition benefits on their take-up. After all, it’s early trial days for now on both counts.

    At minimum though, the rancid rhetoric the press is spouting could pave the way for the DWP withdrawing disability benefits from people with conditions it links to obesity. And that’s a form of coercion too. Namely that by rendering people without support, it could leave them with little choice but to turn to these drastic – and sometimes dangerous – health interventions. Not that there’s actually any guarantee that either will actually improve people’s health, or help them find work with a livable wage.

    There aren’t even enough jobs going for the number of job seekers, let alone sick and disabled people that the government seems hell-bent on shunting into work. Plus, vacancy numbers say nothing of whether the work is appropriate, accessible, and accommodating of people’s health conditions. Not to mention the companies too numerous to count who’s bosses are parasitic pricks profiting off the backs of low-waged workforces.

    Not forgetting the eugenics part in all this

    Every article we found bandied about the concept of ‘obesity’. This pertains to the medical measurement of body mass index (BMI). That might seem innocuous enough at first glance. However, it’s premised on a medical model that disparages fat bodies as automatic indicators of unhealthiness. Essentially, it promotes fatness as something that needs to be fixed.

    Of course, this atrociously ableist thinking tracks, given its roots in eugenics.

    It was 19th century Belgian astronomer, mathematician, and sociologist Adolphe Quetelet who invented the model that later formed the basis of BMI. Notably though, he did so on a study he conducted with only white French and Scottish men. In other words, by its very origins it centred whiteness and patriarchy. Moreover, he pursued this to identify the “ideal” weight and size for an “average man” – by which he quite clearly meant white Western European males.

    A telling passage in his book laid bare the ableism at the heart of it:

    Everything differing from his proportion or condition would constitute deformity or disease.

    Fatness above his metrics constituted a deviation from his “ideal” and inherently signalled sickness. Invariably, it fed into the dominant ideology of the day to devalue chronically ill and disabled lives. Because from there, a who’s who of 19th and 20th century eugenicists took up the concept.

    Predictably, vulture capitalists of the 20th century also sniffed out the profits potential of this junk science-turned medical model. Life and health insurance companies adopted it as a predictor of health conditions.

    So let me be clear: the implicit assumption that there’s anything wrong with fatness in the first place is utter bullshit. The medical mainstreaming of BMI is about one thing, and one thing only. That is, the capitalist urge for policing poor, racialised, and disabled bodies.

    In short, insurance companies hijacked BMI to deny claims. Now, the media-political corporate establishment is making mutterings over removing disability benefits linked to ‘obesity’. These things aren’t unrelated. In a nutshell, it’s the very same eugenicist medical science that threads through both repressive weaponisations of anti-fat stigma and bias.

    Personal failings and anti-fatness

    However, the history of the terminology the corporate media has been using is just the start of all that’s wrong with the coverage.

    Another is that the term ‘obesity’ has a linguistic origin that’s hardly less problematic.

    The Latin etymology ‘obesus’ translates as “having eaten oneself fat”. Additionally then, there’s in-built oppression and othering from a term that literally blames people for their body weight.

    And this is also largely the underlying intimation of the articles too. Outlets largely made the suggestion – though not always explicitly – that fatness equates to laziness. In other words, fat bodies are that way because of people’s personal choices in relation to diet and exercise.

    Obviously, there’s so much wrong with this too. Topple has also previously underscored how this hugely misses the point that, in multiple ways, it isn’t a choice. He highlighted a number of examples:

    • The UK’s addiction crisis, caused by depression-inducing corporate capitalism, that means people are dependent on sugar to make them feel happy and give them energy.
    • Food manufacturers’ use of cheap vegetable and seed oils that human’s cannot metabolise or digest properly – therefore, they sit as fat in our bodies.
    • Our economy’s reliance on jobs that mean we sit in chairs all day.
    • The drive for every member of a household to have to go our to work – meaning meals are rushed.
    • Poverty – which means poor people cannot afford to cook healthy food, or even eat three meals a day without state support.
    • Time poverty – which means poor people don’t have the time to cook healthy food even if they can afford it.
    • The fact DWP claimants are not provided with enough to live on – therefore, all of the above happens.

    Do away with the notion the establishment give a damn

    Moreover, inequitable access to healthy food is also not only down to poverty, but also due food deserts too. Specifically, where you live can determine the cost and availability of food as well.

    Then there’s dietary requirements that can limit the types of food people can eat safely, or that their body needs. These include things like allergies, autoimmune conditions, diabetes, conditions causing digestive dysfunction like gastroparesis, or eating difficulties like dysphagia. Many neurodivergent people also have personal ‘safe foods’. Moreover, plenty of these and other health conditions therefore affect people’s weight gain or loss. So ultimately, it’s massively ableist to make out a person’s body weight is down to their own personal dietary failings.

    And talking of time poverty for overworked and exhausted households – we’ll say it again: disability benefits are also not out-of-work benefits. Many people claiming them actually work, so this extends to them as well.

    Some people – like those with ME – also can’t and shouldn’t exercise, or risk a permanent worsening of their health.

    The point is, framing exercise and diet as a choice vastly oversimplifies something with multiply-marginalising factors at play.

    Of course, the right-wing press knows all this, but has put out this constant drip of discriminatory drivel regardless.

    At the end of the day, hawking hate pays. Bedding down with Big Pharma pays. Celebrating body diversity, tackling structural health inequalities, and buttressing society with a functioning, fair welfare system? Not so much – and the political establishment media lapdogs know this too.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • Disabled people living with mental health conditions came on the receiving end of an exponential surge in corporate media attacks against benefit claimants in 2024.

    Across the year, the right-wing press cranked up its concerted campaign to vilify chronically ill and disabled claimants more than eleven-fold. But significantly, over half of this coverage featured references to mental health as a leading factor in the recent post-pandemic-height rise in claims.

    Of course, the substantial uptick in attention on claimants with mental health conditions could have devastating ramifications in the real world. The Canary’s analysis comes amidst “senior government” sources tipping off the Telegraph that Labour Department for Work and Pensions (DWP) ministers plan to proceed with some iteration of the former Conservative government’s brutal Personal Independence Payment (PIP) reforms.

    Already then, this media-manufactured outrage is serving as a convenient pretext for the Labour government to unleash an ideological swathe of new austerity assaults to the welfare system.

    It’s all a crucial reminder of how the right-wing manoeuvres to single out disabled demographics as undeserving of social security support.

    Corporate media sizing up scapegoats

    The Canary unveiled that in 2024, the corporate media enormously ramped up its scapegoating of disability benefit claimants.

    Specifically, coverage of disability benefits in the Telegraph, the Times, and the Daily Mail together sky-rocketed more than 1130% from 2023’s output.

    But notably, the Canary’s research also found that the three outlets had certain marginalised demographics in their sights in particular.

    The outlets honed in on mental health within the context of disability benefits and unemployment specifically in at least 23 articles (7.7%). In total, the three outlets put out 147 articles either focusing on mental health and disability benefits, or mentioning the two. Notably, the Canary only included articles that did so in a way that made a connection between the two, or at minimum implied it.

    It meant that nearly half the articles in the Canary’s data drew attention to mental health in the context of disability benefit claims and unemployment. They published the majority of these – 135 – in 2024 alone.

    What’s more, they weren’t the only marginalised group the mainstream hate-merchants put in the firing line for benefit clampdowns either. Neurodivergent stigma featured heavily across the corporate outlets’ output too – again showing a marked increase in 2024.

    Articles attributed the rise in disability benefit claims to the increase in claims from autistic people, and people with ADHD. There were 19 pieces (6.4%) that specifically focused on these in the three outlets’ coverage. All but one of these they wrote in 2024.

    Neurodivergence and the connection to disability benefits cropped up across 39 articles within our analysis time-frame all told (13.1%). The Telegraph published just two of these in 2023, while neither the Times nor the Daily Mail linked these in articles before 2024.

    The results offer more proof – if we needed it – that the right-wing press and government have a blatant joined-up agenda to strip disabled people of their benefits wherever they can whip up politically-motivated moral panic.

    Preying on the mental health pandemic fallout

    Where mental health was concerned, a clear narrative emerged. Specifically, the outlets visibly capitalised on the Covid pandemic’s psychological fallout. In particular, they visibly did so to prey on claimants with mental health conditions.

    Articles frequently posited pandemic lockdowns and school closures as a key factor in the surge of mental health problems among young people. Naturally, the right-wing press has been quick to condemn Covid protection measures that helped to shield more clinically vulnerable populations at the height of the pandemic. A Times article in January 2024 proclaimed that:

    The effect of lockdown and school closures on the mental health of young people has also meant more need help with everyday life, officials believe

    By contrast, as for the trauma of living through a global deadly and disabling pandemic, it was tumbleweed from the trio. So between them, outlets simultaneously blamed protections that were vital for keeping chronically ill and disabled people safe, while at the same time managing to punch down on people psychologically disabled by the pandemic. Of course, leave it to the right-wing foghorns to deal a double-blow of ableism in one.

    However, more than this, it’s patently clear that the aim was to invalidate new cases of mental health diagnoses.

    Merry-go-round of media-political ableism

    The Canary’s data uncovered a chicken-and-egg style dance between the corporate media and halls of power.

    We identified how conversations on mental health and disability benefits first appeared noticeably in January 2023.

    Then, in September 2023, then DWP boss Mel Stride announced proposals for a dangerous tightening of the Work Capability Assessment (WCA). Notably, this included honing in on mental health claimants.

    Significantly, the Tories’ response to the consultation stated how the government would:

    specify the circumstances, and physical and mental health conditions, for which LCWRA [limited capability for work-related activity] Substantial Risk should apply.

    In other words, the DWP will decide who this descriptor will apply to going forward. Or, in short, it will obviously move the goalposts to exclude many people living with mental health conditions.

    Up to that point in September, we had found at least seven articles that disparaged the rise in mental health-related claims.

    Of course, we can’t say for certain that these shaped the government’s thinking. However, it seems no coincidence that right-wing talking heads had been harping on about it not long before it took root in the establishment echo-chambers of Westminster.

    Arguably, timing is everything where the corporate press treads. So, it was also no mistake that it started stepping up its vitriol against claimants with mental health conditions in 2024 either.

    In other words, the Telegraph, Times, and Daily Mail planted the seed in the public consciousness. Policy-makers took up this convenient narrative and scapegoat. And on the merry-go-round of client media revolving door politics continued.

    A timeline of tyrannising mental health disabled claimants

    It’s easy to see how the corporate media fear-mongering then paved the way for politicians making a political football out of disabled people with mental health conditions. In fact, the Canary’s data helped plot a notable timeline of this very development as well.

    Between January and the end of March 2024, the three posted a flurry of articles that directly honed in on this connection:

    • 7 January – Times: ‘Millions more will claim disability benefits as mental illness soars’
    • 8 January – Daily Mail: ‘Disability benefits for anxiety and depression have risen 200-FOLD in a decade’
    • 20 January – Telegraph: ‘Are we talking ourselves into a mental health crisis?’
    • 14 March – Times: ‘Benefits data reveals extent of claims over mental health’

    Cue, a disgusting diatribe from Stride. On 20 March, he opined to the Telegraph on all things stereotyping and stigmatising mental health. He made classic bogus contention of work as a health outcome, claiming that:

    we seem to have forgotten that work is good for mental health

    If that weren’t bad enough, Stride took to the dismissive and downright despicable diminishing of people’s mental health. He derided it as the “normal ups and downs of human life” and a case of people “feeling rather down and bluesy”.

    The corporate media had been banging on about all this so vehemently, that it gave Stride the perfect ready-made justification for his atrocious claims. And that of course was the entire point.

    Welfare reforms incoming…

    It should therefore come as little surprise that the Tory government followed this up with a raft of ludicrous welfare reform proposals too. Less surprising still: that people with mental health conditions were a particular target.

    In April 2024, the Tories launched their toxic proposals for changes to Personal Independence Payment (PIP). As with the WCA changes, this would also legislate to shut people with mental health conditions out from the disability benefits system.

    Naturally though, it wasn’t the end of it when Labour took to the helm either. Unsurprisingly, Labour’s DWP chief hate-hawker Liz Kendall has certainly been living up to her arch-right-wing ideology. While she made a big song and dance that she wasn’t jumping on her predecessor’s “bluesy” bandwagon – she basically did anyway.

    In November, she suggested that “self-diagnosed” mental health had contributed to the rise in people unable to work. So, that would be: people unable to access underfunded mental health diagnosis services then? What’s more, it was all wrapped up in a grandstanding over sanction threats, naturally.

    However, more than her disgraceful diatribes, she has gone pedal to the metal on policy-making as well. For instance, job coaches in more mental health settings is one example of Labour amping up this hostile offensive.

    Moreover, lo and behold, Labour appears to now be mulling some of these PIP reforms too. And if it seems a little too on the nose that anonymous “senior government” sources were spilling the tea to the Telegraph, it really shouldn’t. This is what the client media do best.

    The DWP is scratching the Telegraph’s back with an insider tip off. Conversely, the dutiful mouthpiece is doing the government’s dirty work, in preemptively announcing it. A shameless PR-type move to lessen the reputational blow this Spring? It seems highly plausible.

    No different for neurodivergent claimants

    The dataset also reinforced the fact that it has been a similar story for neurodivergent claimants.

    The first piece the Canary found goading the link was a Telegraph article in August 2023 titled:

    Number of children on disability benefit jumps after surge in ADHD and autism cases

    Of course, many of the articles revolved around this bogus notion the right-wing scapegoat-mongers have been spouting. Specifically, this is that healthcare professionals are over-diagnosing people with ADHD and autism.

    Naturally, the implication in the coverage seems to be that autistic people, and people with ADHD shouldn’t be claiming disability benefits either. Broadly, the articles are also suggesting that many have been wrongly diagnosed, and ergo again, should not be eligible to claim disability-based social support.

    The Canary’s Rachel Charlton-Dailey has been documenting this. In August, she debunked one of these shameful tirades. And notably, the article was emblematic of the broader discourse at play across the Canary’s dataset. For one, it had all the hallmarks of the most classic ableist tropes around neurodivergence.

    Overdiagnosis made its cameo appearance, as did a sweep of antiquated terms which Charlton-Dailey incisively pointed out the outlet had used to “delegitimise the conditions”.

    Significantly though, it was the Telegraph’s deployment of misleading statistics to underpin its nonsense claims that was most characteristic of the articles in our dataset.

    In its case, it made a number of deliberate categorical conflations to misrepresent the figures. Charlton-Dailey explained that:

    Despite linking the two and putting the main total of 730,000 kids with DLA – much, much further down, the article itself explains that less than half of claims (337,000) were for “neurodevelopmental conditions such as autism and Asperger’s syndrome”. They then pulled out that 72,500 kids claimed benefits for “hyperkinetic syndrome – also known as ADHD”, despite making it sound like a separate figure this will have actually gone in with the 337k.

    Separately, Fullfact also eviscerated the statistical claims of the piece. The article (still) claims that:

    The number of parents claiming disability benefits for children with conditions such as ADHD and autism has surged by 200,000 since lockdown, new figures reveal.

    However, this simply isn’t true. As Fullfact detailed, that increase instead:

    refers to the total increase in DLA claims for under-18s, rather than only those related to ADHD and autism.

    Naturally, there were other problematic parts of the article too. But the bottom line was that it was using inaccurate, manipulated figures to make neurodivergent claimants a target of public acrimony.

    More mental-health related bile from policy-makers

    In reality, neurodivergent claimants actually made up a small fraction of the overall increases. Not that it should matter anyway. Regardless, it hasn’t stopped outlet’s spewing a slew of headlines all making the same bogus over-egged connection.

    Other shitty takes on neurodivergent disability claims? What the Times outlandishly branded “a new industry” of “disability influencers”. It tracks that the ableist bigot soapbox would frame a community of disabled people helping other disabled people with the notoriously inaccessible disability benefits process, in this egregiously derogatory way. The bullshit insinuation is of course that neurodivergent people are gaming the system – go figure.

    And like with the media fanfare over mental health claims, politicians haven’t passed up the opportunity to pounce on all this either. Amidst his vile comments on mental health in April, Stride also questioned whether people with ADHD and learning disabled people should be entitled to disability benefits.

    A warning signal for more harm

    Predictably, the right-wing outlets have continued with all this in 2025. Less than two weeks in, and establishment shill the Telegraph was platforming former New Labour prime minister Tony Blair’s odious warnings to the government on mental health. He revived the ghost of DWP Tory past, parroting Stride’s facetious “ups and downs” of life drivel. In tandem, Kendall’s self-diagnosis claims made a cameo appearance. Once again, it perfectly illustrated how indistinguishable Labour’s welfare rhetoric is from the Tories.

    Ultimately, disabled people know all too well where corporate media scapegoating leads. This latest maligning of mental health and neurodivergence is invariably a warning signal for the next round of callous cuts and reforms.

    Of course, they won’t be the only demographics in line for this. The Canary has documented how it’s part of a broader-scale attack on disabled claimants en masse.

    We don’t know the details of what Labour has in store yet this Spring. However, all chatter from the government so far points in the direction of some form of the dangerous WCA and PIP reforms. What is clear is that if it takes its cue from the corporate media’s crackdown circus, it will spell more misery and harm for neurodivergent folks and disabled people with mental health conditions alike.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.

  • The right-wing corporate media ramped up its attacks on chronically ill and disabled benefit claimants to a gargantuan degree in 2024. Coverage of disability benefits in the Telegraph, the Times, and the Daily Mail together sky-rocketed more than 1130% from 2023’s output.

    A Canary analysis of nearly 300 articles published by the three major outlets between 2020 and 2024 found that the media sites had put out 91% of their coverage on disability benefits in 2024 alone.

    The data reveals the startling scale of the corporate press’s targeting of disabled people over the past year. What’s more, the analysis demonstrates how politicians shape the media agenda, and vice versa, how a dutiful lapdog corporate press paves the way for repressive government welfare policies.

    Attacking disabled benefit claimants

    In 2024, the political and media establishment doubled-down in its vilification of disabled benefit claimants.

    Throughout the course of the year, both the former Conservative government, and the Labour administration that succeeded it, made a swathe of announcements on plans to reform the UK’s social security system.

    From the former Tory government’s harmful plans to shift the goal-posts on the work capability assessment (WCA), to Labour’s heavy hints it will follow through with this, the Tory bill to spy on benefit claimant bank accounts, to Labour’s tribute act to the election-stranded legislation, the Canary held both governments’ feet to the fire over the ceaseless onslaught of clampdowns.

    Similarly, we demolished misleading, and oftentimes disgusting narratives that the right-wing corporate media spewed. Naturally, it pushed out these damaging tropes in its grotesque bid to scapegoat a community it consistently sidelines in its reporting and within its newsrooms.

    It was plain to see that the right-wing foghorns were blaring out ever more bile on benefit claimants. Just as evident was that chronically ill and disabled people were their primary target.

    Now, the Canary has sought to put this uptick in media ableism in numbers. And what our analysis revealed was pretty much what we anticipated. Specifically, we uncovered a starkly colossal climb in the corporate media’s focus on disability benefit claimants.

    Soaring spike in coverage

    The Canary reviewed every article the Telegraph, the Times, and the Daily Mail put out with the key terms “disability benefits” or “sickness benefits” between 1 January 2020 and 31 December 2024. These included a range of news, analysis, editorials, and opinion pieces.

    From this, we found that stories on disability benefits in 2024 soared by 1132% from 2023’s coverage. Specifically, articles containing these key terms increased from just 22 in 2023, to 271 in 2024.

    Before 2023, results for our search terms barely registered on the three media sites’ radar. Between 2020 and 2022, the Canary identified just four articles.

    The Canary also searched for individual references to separate benefits. This included PIP, DLA, ESA’s support group, and Universal Credit with no work requirements. This was to account for any evolution in the language and discourse around these types of health-related benefits.

    However, very few additional articles cropped up for the period between 2020 to 2023 for these. Similarly, we looked for mentions of the (outdated) term ‘incapacity benefit’ and had the same result. Overall then, we can’t attribute the increase in media attention on chronically ill and disabled benefit claimants to changes in terminology.

    Of course, it doesn’t mean that these outlets weren’t targeting disabled benefit claimants during this period. After all, there was still a flurry of articles throughout this timeframe that did so. However, it does show that these outlets markedly ramped this up in 2024 by comparison.

    Nothing new for disabled benefit claimants

    We also know that the corporate press has persistently singled out disabled claimants amidst successive Tory government blitz over benefit reform in years past. For instance, a 2012 study comprehensively reviewed corporate media output during the New Labour government years.

    The analysis explored more than 6,000 articles across two overlapping time periods, according to data availability. The first looked at texts that the Times, the Mirror, the Guardian, the Independent, and the Daily Mail had put out between 1995 and 2011. Meanwhile, the study was able to examine articles in the Telegraph, the Sun, and the Daily Express between 2000 and 2011.

    Predictably, it found that the content of coverage was “skewed towards negative representations.” Significantly, it set out how the high (and disproportionate) percentage of coverage on benefit fraud and claimant undeservingness more generally directly influenced societal stigma of benefit claimants.

    Moreover, the study illustrated how the “language and content of ‘negative’ coverage” had shifted over time. In particular, it found that there was a clear point – 2008 – at which the ‘scrounger’ narrative began to enter circulation in the press.

    Meanwhile, a 2012 case study on Murdoch’s main money-spinner and hate platform the Sun concluded that:

    increasingly negative perceptions of disabled people in society are congruent with dominant portrayals of disability benefit recipients as undeserving in the right-wing press.

    Notably, the paper laid out that these narratives had real-world consequences. Namely, this was how they built the case for the Tories to unleash their devastating sweep of reforms hitting disabled claimants as part of the Welfare Reform Act (2012).

    And just on an anecdotally observed level, there’s been no shortage of media smears of benefit claimants as fraudsters or a burden to society across the long fourteen years of Tory parliamentary reign either. Disabled people know this without needing to see the numbers – because they’ve been at the receiving end of it in wave after wave of harmful benefit reforms.

    In short, it’s obviously the case that corporate media ableism and attacks on disabled benefit claimants is nothing new.

    Nonetheless, what we can see is that the focus on ‘disability benefits’ as a broad grouping, or the concept of so-named ‘sickness benefits’ has spiked in 2024 by comparison to the previous four years.

    How the discourse has evolved

    Essentially, spurious aspersions on disabled people’s deservingness for disability benefits appears to now be all the rage – again. The latest linguistic fad in the corporate press for vilifying them seems to revolve around a few things:

    • Attacking people claiming ‘disability benefits’ like PIP and DLA, and those claiming the health-related component of other working-age income-based benefits. These obviously included benefits like Universal Credit’s limited capability for work-related activity (LCWRA) group, and ESA’s support group entitlements. Arguably, the latter corresponded with the then Conservative government’s move to abolish the WCA.
    • Sickness. So-called ‘sickness benefits’, ‘long-term sickness’, and ‘sick note culture’ came up often. People newly disabled in the fallout from the pandemic have been ripe for the corporate media’s abuse. And it shows in the figures.
    • A term that even the right-wing dishonourable (see WASPI women betrayal for one) Liz Kendall was loathe to use, before she and her department proceeded to bandy it about anyway. That is, ‘economic inactivity’, or ‘economically inactive’. This is of course in spite of the fact that disabled people who are not working are very much still economically active – since they still spend to participate in daily life.

    It’s also notable that conversations around so-called economic inactivity and long-term sickness began to appear in search results in 2022.

    Significantly, this happens to be post the government lifting Covid restrictions. In other words, this discourse cropped up when the media cycle had moved into its post-pandemic reporting. Obviously, the Canary isn’t saying the pandemic is over. It’s not – and this is especially true for vulnerable populations. Ultimately, Covid continues to infect, disable, and kill people.

    However, it’s clear that the corporate media’s current fixation on shunting chronically ill and disabled people into work has emerged in the aftermath of the height of the pandemic.

    And more to the point, these outlets have weaponised the surge in people leaving work due to long-term sickness. That would be the long-term sick that the height of a global health pandemic left battling astronomical rates of long Covid. According to the Office for National Statistics (ONS)’s latest count, that was over two million people by the way. The Canary has consistently pointed out that unsurprisingly, the corporate media continues to conveniently ignore this fact.

    Frequent demonising themes

    The Canary also identified a number of themes that occurred frequently across the data. Many of these involved misleading and false narratives we’ve repeatedly debunked. Assigning each article to one of these themes, we found that the following routinely cropped up as the key focus:

    • The need for a ‘crackdown’ on claimants (9.7%)
    • The ‘benefits bill’/ cost to the taxpayer and UK economy (8.7%)
    • Fraud or abuse of the welfare system (6.7%)

    Many of these narratives came up in articles we assigned under different themes too. The above represents articles where the main or major thrust of the piece revolved around the particular narrative. However, articles would often mention other themes as points within their argument as well, even if it wasn’t the primary focus. In short then, these fallacious framings were actually a lot more prevalent than the above figures suggest.

    Of just those articles which focused on disability benefits, unemployment, and benefits more broadly, the results are as respectively for each of the above: 13%, 11.7%, and 9%. This applied to 222 articles in the dataset. Effectively, this excludes articles about separate topics, which only mention disability benefits in passing.

    Other notable narratives included:

    • Rates of so-called ‘worklessness’ or ‘economic inactivity’ (8.1%)
    • People being better off on benefits, or benefits too generous (4.5%)
    • and immigration (4%).

    The final theme managed to exhibit ableism and anti-migrant racism both – at the same time. Notably, these articles typically took the divisive angle that pushing long-term sick people back into work would help curb immigration. The patently racist-motivated implication behind this was obviously that employers could reduce their reliance on migrant workers if more British people on long-term sick leave returned to work.

    Politicians pushing narratives

    Unsurprisingly, politicians and their advisers drove a significant proportion of the three outlets’ coverage of stories directly focusing on disability benefits, benefits more broadly, and unemployment. The Canary identified a total of 50 articles which comprised largely of policy announcements and plans, or comments from current politicians.

    The three media outlets published all but three of these in 2024. The Daily Mail, and the Telegraph published these in the final two-quarters of the year. Two were in relation to then DWP boss Mel Stride’s announcements on future welfare reforms. The other pertained to then Tory chancellor Jeremy Hunt’s Autumn statement.

    Meanwhile, the outlets put out the bulk of 2024’s politician-instigated content in the final quarter of the year. In fact, the October to December period accounted for 26 articles – more than half. Notably, this corresponded with a slew of the Labour government’s ‘Get Britain Working’ plan, and welfare policy announcements. Ten of the articles in this period outlets published the weekend preceding, up to and including the white paper publication date on Tuesday 26 November.

    Alongside this, a couple of articles revolved around Labour’s announcement of placing job coaches in mental health settings. Other pieces related to Kendall’s rhetoric around ramping up social security conditionality for young people. Additionally, Labour’s plans for the WCA reforms featured in one article.

    Most of the remaining articles involved comments from ministers, Tory leadership candidates, and peers.

    The second quarter of the year hosted the next largest output, with ten articles in total. Primarily, this coincided with a number of welfare reform announcements then prime minister Sunak made ahead of declaring the July General Election.

    Who’s spearheading the attacks on disabled benefit claimants?

    It demonstrates a media-parliamentary symbiotic ecosystem. Essentially, it’s evidence of the servile client media co-ordinating in a mutually beneficial arrangement. This is one where politicians set the agenda, and the corporate press acts as a willing collaborator in scapegoating marginalised communities.

    Conversely though, the Canary has also illustrated that this also works in reverse as well. Notably, outlets like the Telegraph and Times in particular have moved to disseminate the policy takes of right-wing think tanks like the Centre for Social Justice (CSJ).

    Of course, this is the brainchild of none other than infamous former DWP secretary Iain Duncan-Smith. Ahead of the 2024 party conference season, the Canary flagged how these outlets platformed CSJ research on welfare reforms.

    So it should also come as little surprise that the Canary found that a number of articles in our dataset referenced the CSJ. In total, there were 27 that name-dropped the think tank. The Telegraph put out the majority of these (17), while the Times, and Daily Mail published five each. Four of these were in 2023, but the rest entered circulation in 2024.

    As the Canary previously pointed out, politicians and media pundits have been routinely citing CSJ statistics. Specifically, they’ve used the CSJ’s numbers on long-term sick people that they claim could reenter the workforce. We interrogated the basis for its figure, and found it palpable nonsense. Nonetheless, the damage is clearly done, given how often these outlets are relying on CSJ evaluations.

    Essentially, policy think tanks like the CSJ blur the lines between the political and corporate media establishment. They do this so effectively, that it’s hard to make out who’s driving the charge.

    In that way, it’s maybe more accurate to say that these actors have worked in tandem. In other words, they’ve colluded to stigmatise disabled benefit claimants.

    Whichever way round then, it’s patently clear that they’re playing to the same hymn sheet over punching down on disabled people at present.

    It’s even worse than this

    It’s worth noting that this analysis isn’t comprehensive. The Canary focused on the two select key terms in its search. However, this wouldn’t have captured all the instances of the outlets targeting chronically ill and disabled people claiming benefits, or not in employment.

    For example, doing a search of the sites for the key term “long-term sickness” paired with “benefits” brought up a significant number more articles not included in our analysis. The Canary didn’t review these in-depth as with the other search terms. Given this, the following figures represent the number of search results, rather than the number of articles that are actually relevant. Moreover, some of these will be duplicates of results from the other searches.

    However, the data still gives an approximate impression of the overall trend. And once again, the results show a vast spike in stories in 2024.

    What’s more, the Canary explored coverage in only three major papers. However, many other outlets participated in this punching down parade on disabled benefit claimants too.

    Nevertheless, the analysis still paints a picture of the increasingly hostile, toxic corporate media environment for disabled claimants.

    Topping the tables for the most servile media suck-up…

    And the award for the most overzealous political shill and ableist hate-monger goes to: the Telegraph. This was for an astonishing total of 143 articles. In short, it put out almost half (48%) of the articles the Canary identified in our search. It means the right-wing broadsheet pipped both the Murdoch-mouthpiece and the vile right-wing shitrag to the post by some mile.

    Top marks too for the tripartite of washed-up political has-beens still clamouring to be relevant. Bottom of the barrel-scrapers for political commentary ranged from DWP ‘grim reaper’ Iain Duncan-Smith, to genuine ghoul Matthew Parris, and across the political divide (though not really) to the biggest sore loser the world has likely ever known, the epitome of privileged and entitled white men-kind – Jonathan Ashworth.

    Ultimately, this is the media political mouthpiece machine at its finest work. The bottom line is this: the corporate right-wing press ratcheted up its coverage of disability benefit claimants in 2024.

    And it’s all part of the politically-motivated attack on chronically ill and disabled people’s rights. Of course, this has long been a mainstay of cruel successive governments. That this uptick in coverage of disability benefits has shot up in an election year is also clearly no coincidence. In the past year, both major parties have vilified non-working disabled people in their bids to pave the way for the next callous wave of punitive welfare reforms.

    Media manufacturing consent for more harm

    Now, it’s evident that the new Labour government is using the media to manufacture consent for its largely undisclosed plans. Of course, this could all therefore have damning ramifications where future welfare-related policy is concerned.

    As the Canary’s Rachel Charlton-Dailey has reiterated this new year already, the media typically steps up these demonising narratives ahead of whichever government-of-the-day’s move to embed ever more restrictive, punitive welfare reforms and cuts.

    The fact that these outlets churned out the bulk of these articles in the final quarter of the year speaks volumes too. At the end of the day, it’s all about laying the groundwork for Labour’s Spring policy announcements. And if the rise of the corporate media’s demonising rhetoric in the past year is anything to go by, disabled people should brace for another round of welfare odes to Duncan-Smith.

    Featured image via the Canary

    By Hannah Sharland

  • The Department for Work and Pensions (DWP) has seen a 38% increase in just three years in the number of claimants making official complaints against it. Moreover, the head of the independent body responsible for dealing with claimant complaints has slammed the DWP for ” simply not doing what its own processes and procedures say they should”. It comes amid a startling 83% increase in the number of complaints accepted by the independent body, too.

    Perhaps the best summing up of the situation is to be found in one DWP complaint, where it told a dying claimant that they owed it £89,000 – when they didn’t actually owe anything at all.

    Nearly 50% of DWP complaints upheld

    The Independent Case Examiner’s (ICE) 2023-2024 annual report offers insight into the complaint-handling process within the DWP. It outlines recurring patterns of administrative errors, delays, and the inadequate treatment of vulnerable claimants. All this suggests that DWP has not fully embraced the principles of accountability and effective service delivery.

    The ICE office serves as a mediator between the public and the DWP, tasked with investigating complaints of maladministration. For the reporting year, the ICE office experienced a 38% increase in complaints compared to the past three years, highlighting a growing dissatisfaction among claimants. Among the complaints accepted for examination, nearly 50% were fully or partially upheld, a figure indicative of consistent service failures.

    The report asserts a commitment to fostering improvements within the DWP. However, the patterns observed – such as poor communication, lack of prompt action, and insufficient redress – raise questions about DWP’s ability to enact meaningful change based on ICE recommendations.

    Chaos across the DWP

    The ICE report documents various categories of complaints, such as Universal Credit, disability benefits, debt management, and child maintenance, among others.

    Universal Credit:

    Universal Credit remained the most complained-about benefit, reflecting its complexity and the impact of policy decisions such as mandatory recovery of overpayments caused by administrative errors. It also had one of the highest rates of complaints being upheld.

    However, Universal Credit was also subject to one of the most shocking complaints about the DWP.

    In May 2021, Customers A and B made a joint Universal Credit claim but received no payments as their income exceeded the entitlement threshold. B declared a serious health condition and later claimed New Style Employment and Support Allowance (ESA). In early 2022, A reported that the couple would soon receive capital exceeding £16,000, which temporarily affected their Universal Credit claim, requiring a DWP decision on whether the claim should close or the capital disregarded.

    The DWP took three months to decide, initially miscalculating capital and incorrectly applying nearly £89,000 from the start of the claim. Although the error was corrected the same day, delays led to a £300 Universal Credit overpayment, which was referred for recovery without notifying A. The claim was eventually closed mid-2022, and Debt Management later contacted A and B to recover the overpayment.

    A challenged the overpayment, citing distress due to B’s terminal condition. DWP’s subsequent errors included sending a letter erroneously claiming a debt of £89,000.

    After further review, DWP acknowledged the mistake and revised the debt to nil. However, their errors caused significant distress during B’s final days. The DWP offered just £200 in compensation – despite A saying that the DWP’s actions had hastened B’s death.

    Universal Credit’s framework’s rigidity and lack of proportionality in overpayment recovery indicate structural deficiencies. Vulnerable claimants, unaware of overpayments, are disproportionately penalized, undermining the principles of fairness and trust.

    Disability Benefits:

    The transition from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) and related issues in communication exacerbated hardships for claimants. For example, a parent contested DWP’s abrupt change in the appointee for their child’s DLA without notification. Despite prolonged distress and inconvenience, DWP delayed in resolving the issue, later reinstating the rightful appointee and arrears under ICE’s direction.

    Procedural lapses in notifying stakeholders and delayed responses expose a failure in safeguarding the interests of dependent and vulnerable groups, violating procedural justice.

    Debt Management:

    Debt management, a critical area of claimant dissatisfaction, highlighted inconsistencies in application processing and lack of proactive communication. For example, a claimant requesting Support for Mortgage Interest (SMI) faced months of delays due to repeated administrative missteps. Despite escalating financial hardship, the DWP failed to address urgent needs until ICE’s intervention.

    The neglect of claimants’ immediate financial crises underscores systemic inefficiencies. Such failures question the robustness of the DWP’s operational oversight.

    Structural and systemic failures

    The ICE report identifies systemic weaknesses within the DWP:

    1. Lack of Vulnerability Safeguards: Across multiple cases, the DWP’s failure to identify and accommodate claimant vulnerabilities had profound negative effects. For example, vulnerability markers were either ignored or inadequately addressed in significant decisions, such as withholding payments.
    2. Delays and Inefficiencies: The average time to conclude investigations highlights a mismatch between the urgency of claimant needs and the DWP’s procedural timelines. Some claimants waited years for resolutions, as seen in cases involving arrears payments and benefit reinstatements.
    3. Insufficient Accountability: Many of the consolatory payments and apologies issued seemed inadequate compared to the distress and financial harm inflicted on claimants. For instance, in cases of severe procedural failings, consolatory payments as low as £50 were deemed insufficient.

    The report commends the DWP’s incremental changes, such as revised guidance for vulnerable claimants and improved debt management procedures. However, the critical lens reveals these measures as reactive rather than preventative. ICE’s Service Improvement Observations (SIOs) repeatedly cite issues stemming from outdated policies or failure to act on past recommendations.

    • Proactive Policy Design: The DWP must prioritize proactive identification of vulnerabilities, ensuring automatic safeguards are in place to prevent procedural missteps.
    • Improved Communication Channels: Clear, timely communication with claimants is essential. Automation without adequate human oversight has exacerbated errors, necessitating a hybrid model of digital and manual checks.
    • Enhanced Compensation Framework: Consolatory payments and redress mechanisms must reflect the severity of claimants’ hardships. Current practices undervalue the real-life consequences of maladministration.

    The DWP: simply not doing what it’s supposed to

    Head of ICE Joanna Wallace said of the DWP:

    Given that there is some delay between the events a customer is complaining about, and my office seeing a complaint, it can be frustrating to still see complaints about things I know DWP have addressed.

    She particularly noted that Universal Credit was an issue, saying:

    Overpayments to students would be one example from this last year – I raised this concern and the action DWP had taken to stop repetition in my previous annual report, but these customers with these concerns have continued to come to my office and some of these cases have been amongst the most concerning I’ve seen.

    In no small part this is because Universal Credit procedures require all overpayments to be recovered, regardless of their cause. This can mean that a customer can do absolutely everything they should have done in terms of telling DWP about their circumstances, but due to administrative error be overpaid.

    And overall, Wallace said:

    I agreed with a customer’s view that they had not received the service they should, and that DWP hadn’t recognised that fully, in about half the cases I saw during this last year. Most often, as I’ve commented before, this is due to the department simply not doing what its own processes and procedures say they should.

    The 2023-2024 ICE report underscores persistent challenges in DWP’s complaint-handling mechanisms – but also its overall conduct.

    While incremental improvements are evident, the prevalence of service failures, particularly affecting vulnerable groups, demonstrates an urgent need for systemic reforms. Claimants’ case studies expose a troubling pattern of indifference and inefficiency, further showing that the department is barely fit for purpose.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • The year has barely started but already disabled people are on our guard for more attacks. And we’ve got good right to be, too. In the last few months since the Labour Party came into power we’ve seen hatred for disabled people steadily rise.

    While it was definitely fueled by the last iteration of the dying Tory government as their swan song, the least Labour could do was pour water over the disability hatred bin fire. Instead, during their short reign Starmer, Reeves, and Kendall have all fanned the flames.

    Where the government have stoked the fire, the corporate media and Twitter outrage merchants have poured petrol on it – so that every single thing disabled people do is pulled apart and reframed as scrouging from those hard-working taxpayers.

    Disabled people didn’t even get a break from the disgusting bile spewed at us over Christmas, with professional parasitic outrage-farming couple Richard Lice and Isabel Oakshitt deciding to spend their Christmas holibobs talking shite about Motability.

    Whilst the venom them and their ilk were spewing for clicks can be easily debunked (and was, by me), many who they have convinced are their demographic won’t look at the facts in front of them when they want someone to blame.

    Of course, the ruling class are always the ones who shout the loudest, but end up taking the least blame.

    Funny that.

    Disabled people: fighting for decades – and for decades more?

    This of course is nothing new. We see this ramping up of the disability benefit thieves narrative every time the government are getting ready to take away our support – and especially before welfare shakeups. Many thought Labour – hoped Labour – would be different to the cruel Tories.

    But after all it was Blair’s government in 1997 who realised that in order to get the public on board with welfare reforms they had to first turn everyone against disabled people (especially activists) who they’d mostly supported in their fight for more rights.

    This current push to make disabled people the enemy might seem out of the blue for many, but you have to consider the fact that Labour have promised that their plans for disabled people will start to be unveiled in march.

    There’s whatever the fuck they’re planning with benefits, as they’re still not telling us whether they’ll scrap the DWP WCA reforms or whether they plan to go ahead with the batshit idea of making PIP vouchers.

    There’s also the totally fresh ideas to Get Britain Working – not to be confused with the Conservatives Back to Work plan from last summer which is completely different.

    The demonisation has picked up a pace

    Last week I was asked by Shelagh Fogarty on LBC what I thought was the most urgent thing that needed to happen in order to make life better for disabled people. My reply was:

    More than anything we need an attitudinal change, we need to change the way that we treat disabled people and the way that we think about disabled people. And that’s not gonna change until the government and the media stop making us the enemy.

    Because whilst there’s always been biases in society, many wouldn’t, not only so horribly towards disabled people but also terrified of becoming us, if being disabled and needing benefits wasn’t painted as the worst possible thing a person can be.

    It was suggested the other day by right-wing arsehole Giles Fraser that assisted dying happened because families stopped caring for their disabled relatives and the burden fell to taxpayers for care.

    That simply isn’t true.

    In my opinion we ended up with assisted dying because disabled people were convinced, through the government and media, that we were burdens to our families.

    Disabled people will continue to refuse to be silenced in 2025

    You may’ve noticed I’ve been quiet round here these last few weeks and that’s cos I’ve been plowing away writing my book Ramping Up Rights: And Unfinished History of British Disability Activism. However it’s been hard to write about the battles disabled people fought and won to gain our rights when the current establishment are doing everything they can to strip us of them again.

    Whilst writing this book I was also able to see a clear line spanning the last 30-plus years which saw the many ways that successive governments were able to use the media manipulate the British publish into believing that disabled people who needed benefits to live were the enemy.

    But what I’ve also seen is just how resilient disabled people are, just how much we refuse to just roll over and die – as much as it would make the government’s job easier if we did.

    That refusal to be ignored, silenced, or disregarded.

    That determination that we will not let them take away our rights, no matter how much they try.

    And though we have lost many battles with cruel governments, our fight is what has stopped them from obliterating us all.

    We need to harness that fight into 2025, those of us that can call out the vile behaviour of the government and media, and come together to fight not just benefit cuts but the stripping away of our humanity.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • The Department for Work and Pensions (DWP) has mistakenly paid £512 million in state pension and pension credits to deceased individuals over the past five years. It comes as the department cut chronically ill and disabled people’s benefits repeatedly.

    DWP: half a billion to dead people

    As the Telegraph reported, the DWP has paid nearly half a billion pounds to dead claimants since 2019. This issue arises when the DWP isn’t promptly informed of a pensioner’s death, leading to continued payments. In such cases, families are not required to return the overpaid amounts.

    The DWP relies on relatives to report deaths, but delays can occur especially when families are grieving. Additionally, the DWP receives death notifications from the General Register Office, but this process can be slow.

    Yet over the same five-year period, the DWP has also underpaid £209 million in state pensions. These underpayments often result from complex pension rules and administrative errors. At the same, the new Labour Party government has also cut the winter fuel payment – plunging potentially hundreds of thousands of older people into poverty.

    As the Telegraph noted of the £512m overpayments:

    Less than half has since been recovered as there is no legal obligation for families to return the money.

    The £257m lost could have covered winter fuel payments for up to 1.3 million pensioners.

    However, perhaps more pertinently, the department has cut benefits to the bone in the same time – throwing hundreds of thousands of people into poverty.

    Half a decade of misery

    Since 2019 (and long before too), the DWP has been at the center of criticism for the significant real-terms cuts to social security that have adversely affected millions of households.

    Despite the government’s rhetoric about supporting the most vulnerable, successive policies and a lack of adequate uprating of benefits have left low-income families, disabled people, and unemployed individuals struggling to meet basic living costs.

    According to a recent analysis by the Resolution Foundation, in 2022 alone benefits rose by just 3.1%, while inflation peaked at over 10%, leaving recipients effectively 7% worse off. For households reliant on Universal Credit, this has translated into a significant reduction in purchasing power for essentials such as food, energy, and housing.

    One of the most striking examples of the DWP’s failure to protect vulnerable groups is the treatment of the £20-a-week uplift to Universal Credit introduced during the pandemic.

    While this temporary measure provided much-needed relief for millions, it was withdrawn in October 2021 despite widespread warnings about the detrimental impact its removal would have.

    The Joseph Rowntree Foundation estimated that the cut pushed 500,000 more people into poverty, including 200,000 children. The DWP’s decision to prioritise budget savings over social wellbeing has been condemned as short-sighted and harmful.

    Meanwhile, other structural issues within the social security system have compounded the problem.

    Structural abuse from the DWP

    The benefit cap, which limits the total amount of support a household can receive, has not been adjusted since 2016.

    As a result, it has become increasingly punitive as inflation has eroded its value.

    The Child Poverty Action Group estimates that 123,000 households, including over 300,000 children, are affected by the cap, with many families unable to afford adequate housing or nutritious food.

    Similarly, the two-child limit on claiming child tax credits or Universal Credit continues to deepen child poverty, with the Resolution Foundation reporting that it affects around one million children. The Labour government refused to reverse the Tory policy.

    The DWP has defended its approach, arguing that the social security system must balance providing support with incentivising work. However, critics argue that this rationale is both misleading and harmful.

    The assumption that poverty is a result of insufficient motivation to work ignores the complex realities faced by many low-income families, including the prevalence of in-work poverty.

    The Resolution Foundation found that more than half of all households in poverty have at least one adult in employment, highlighting the inadequacy of wages and the rising cost of living as primary drivers of financial hardship.

    The government’s reliance on punitive measures, such as benefit sanctions, has further undermined the social security system. Sanctions, which involve withholding payments from claimants deemed to have failed to meet certain conditions, have been criticised as counterproductive and damaging.

    A study by the University of York found that sanctions disproportionately target vulnerable groups, including disabled people and single parents, and often lead to increased debt, food insecurity, and mental health problems rather than improved employment outcomes.

    A lost five years while the government throws money away

    The cumulative impact of these policies has been stark.

    The Trussell Trust, which operates a network of food banks across the UK, reported a record increase in demand in 2023, with over three million emergency food parcels distributed. This figure underscores the growing number of households unable to afford basic necessities, a situation directly linked to the inadequacy of social security.

    The DWP’s handling of social security since 2019 has also raised questions about accountability and transparency. Reports of delays, administrative errors, and poor communication have eroded public trust in the system. For instance, the rollout of Universal Credit has been plagued by criticism for its complexity and the five-week wait for the first payment, which often plunges claimants into debt.

    So, the errors with DWP payments to dead claimants have financial implications for the public and highlight the challenges in managing the state pension system. However, they also show that the department and successive governments are catastrophically mismanaging our money – while throwing countless people into poverty unnecessarily.

    Featured image via the Canary

    By Steve Topple

    This post was originally published on Canary.

  • Happy new year! As the Canary is back from our Christmas break today I thought what better time to start new year resolutions than six days late?

    Starmer needs to make some resolutions…

    Of course, being a perfect baby angel I don’t need to change in any way (except maybe be better at time keeping and eating more vegetables). So instead, I thought I would give my resolutions to the prime minister and his government instead.

    While there are A LOT of ways Keir Starmer should be trying to better himself and his government in the new year, he needs to make some serious pledges to disabled people. So here are some I wrote earlier for you Mr Starmer

    One: I will not be a nosy cunt

    As of yet, there’s been no news on whether Starmer still plans to spy on benefit claimant’s bank accounts. However, during his maiden speech as prime minister at the Labour Party Conference back in October 2024, he revealed his plans to bring in legislation that will give DWP benefits inspectors more powers to snoop on benefits claimants’ accounts.

    This sounded eerily similar to Tory plans which passed through the commons but then were binned with the old government. Big Brother Watch are still running a petition to block the plans, but they need your help. You can sign it here.

    Despite what the press have convinced the public, disabled people are allowed to manage their own money and should be given the privacy to do so, without living in fear of having their benefits stopped because of how they spend or make money.

    In the meantime, keep the fuck out of our business, prime minister.

    Two: I wont take the PIP

    Another plan that it’s unclear whether the red Tories will be stealing from the blue Tories is around, surprise surprise, disability benefits.

    Last year the Tories ludicrously decided they would try and stop giving benefits claimants money and instead give us vouchers for things we needed like ramps and handrails, which would definitely feed us and keep us warm during the winter.

    Labour once again haven’t directly thrown this idea out. They allowed the consultation to run it’s course and minister for disabled people Stephen Timms told the Commons that the DWP would be reviewing all 16,000 responses, before coming up with their own plan – though if it’s anything like the Get Britain Working plan, it won’t be that different.

    Frankly what disabled people do with any money they receive is up to them, if we all want to blow it all on cigs and booze or maybe even push the boat out and, I don’t know, buy ourselves warm winter clothes, that’s got fuck all to do with the government.

    Three: I wont talk shite to my mates in the press

    It seems like every other week the prime minister or members of his cabinet are suggesting benefits claimants are draining the national resources and that they could all work if they tried hard enough.

    Of course the prime minister knows this isn’t true, but being a Blairite he also no doubt knows that the only way he’ll be able to destroy more disabled people’s lives is by making them public enemy number one.

    What the prime minister actually needs to do is to pledge for media reform and put more pressure on outlets to not demonise marginalised groups of people. But then if he did that he’d risk the common man lookin up and seeing who’s really causing all the problems.

    Four: I’ll stop being vague AF

    At the end of the day, disabled people haven’t got a bloody clue what’s going to happen to us in 2025, and that’s because the government are deliberately withholding any plans.

    They say they need time to develop their own green paper on disability and welfare reform, but this should’ve been something they had planned before they came into power.

    While finding out about whatever they’ve got coming for us may not put our minds at ease, it will enable disabled people to mobilise against the government – but we need to know what we’re fighting before we can fight it.

    Featured image via the Canary

    By Rachel Charlton-Dailey

    This post was originally published on Canary.

  • From an exuberant mountaineering woman to a boy representing unheard refugees, here are some of the brave individuals that gave us hope

    Nine years ago, Cecilia Llusco was one of 11 Indigenous women who made it to the summit of the 6,088 metre-high Huayna Potosí in Bolivia. They called themselves the cholitas escaladoras (the climbing cholitas) and went on to scale many more peaks in Bolivia and across South America. Their name comes from chola, once a pejorative term for Indigenous Aymara women.

    Continue reading…

  • After decades battling severe ME/CFS and systemic lack of support, Marcia Doherty – known online as “Madeline” – is going fully public in a desperate bid to secure her survival and fight for change. It comes amid her being approved for assisted suicide in Canada – something she doesn’t actually want at all.

    Marcia – living with ME/CFS

    Marcia lives with myalgic encephalomyelitis (ME/CFS), a debilitating condition often triggered by viruses, which can rival cancer and late-stage AIDS in severity.

    It’s a chronic systemic neuroimmune disease which affects nearly every system in the body. As a result, it causes a range of symptoms that hugely impact patients’ daily lives. These typically include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.

    In particular, post-exertional-malaise (PEM) is the hallmark feature of ME. This involves a disproportionate worsening of other symptoms after even minimal physical, social, mental, or emotional exertion.

    At least 25% of people live with severe ME. In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.

    Despite all this, the illness is under-recognised in British Columbia’s medical system. Specifically, it lacks an Medical Services Plan (MSP) category of coverage. Essentially, this is British Columbia’s public health insurance scheme. It means that the state is leaving Marcia without critical care.

    Assisted dying before assistance to live with ME/CFS

    As a result, it has forced Marcia into $45,000 medical debt. Given this, Marcia has had to rely on crowdfunding to survive. Her health has deteriorated to the point the state has approved her for Medical Assistance in Dying (MAiD). However, Marcia wants to live despite the severe ME/CFS.

    As the name suggests, MAiD is Canada’s medically assisted suicide programme. It first legalised the practice in 2016 for adults with terminal diagnoses. However, it has since expanded this out to disabled with non-terminal conditions who experiencing “intolerable physical or psychological suffering”.

    It has led to harrowing stories of chronically ill and disabled people turning to MAiD due to poverty, homelessness, and a lack of quality available healthcare. So naturally, it’s extremely concerning Marcia has been approved for this, while the Canadian healthcare system continues to utterly fail her.

    Marcia explained the abysmal support and care situation for people living with ME in Canada:

    For years, I’ve fought to stay alive and advocate for my community.

    Yet over and over I’ve been told there’s no route to adequately help people like me – no human rights recourse, no legal pathway to address the systemic neglect of my illness.

    I’ve worked with the medical community, government ministries and legal experts, and been told that coverage for ME is a political decision. Well, political change only happens when there’s public awareness – which is why I’m sharing my story.

    It’s not just Marcia, its a worldwide problem for ME/CFS

    Alarmingly, what Marcia has described about the appalling lack of care for people living with ME/CFS isn’t isolated to Canada either.

    In the past year alone, the Canary has covered the stories of multiple ME patients. In the UK, the NHS has abused, neglected, and sectioned patients like 18-year-old Millie McAinsh and 24-year-old Carla Naoum. From Australia, we spoke to severe ME patient Anna. She is still without support or care to leave an abusive household.

    There’s 29-year-old Nevra in Pakistan too. Like Marcia, she has had to fundraise for care – and is currently doing so for urgent endometriosis surgery. Meanwhile, a hospital in New Zealand forced 34-year-old severe ME patient Rhiannon into an ‘aged care facility’ as the government has no provision in place to support her elsewhere.

    It’s a disgraceful state of affairs that governments globally are denying ME patients like Marcia the support they need. Moreover, the British Columbian state’s authorisation of an assisted death for Marcia, before funding adequate care, should send alarm bells ringing.

    It speaks to a broader problem around cost-cutting capitalist governments. That is, how they are more prepared to sanction medically assisted suicide than proper funding for research, healthcare, welfare, and social support.

    Marcia speaking out for ME patients in Canada

    Marcia is bravely speaking up for people living with ME/CFS in Canada. In British Columbia alone, the condition affects at least 87,000 people.

    Medical professionals have warned Marcia that public pressure could damage her fragile health further. But she hopes that going public will spur much-needed action. She has launched a petition calling for better recognition, care, and support for ME.

    People can support Marcia’s petition, both in Canada and internationally, and learn about her fight here.

    They can also learn more about her story via her video announcementpodcast and YouTube channel, and support her crowdfunding campaign.

    Featured image via screengrab

    By Hannah Sharland

    This post was originally published on Canary.

  • Health minister Andrew Gwynne has shown how little the new Labour Party government will actually do to fix the abysmal state of NHS care for people living with severe myalgic encephalomyelitis (ME/CFS).

    This came in the form of exasperatingly atrocious letter he penned to the coroner in charge of the inquest into the death of severe ME patient Maeve Boothby-O’Neill.

    The report itself should have Labour moving fast to redress decades of delayed action on curative treatments, and deadly patient stigmatisation. Instead, Gwynne’s reply was a masterful performance in this government’s characteristic brand of hand-wringing.

    Severe ME: Gwynne’s response to Maeve’s coroner

    Gwynne’s letter was a response to coroner Deborah Archer’s report on the catastrophic NHS failures that ultimately led to the 27-year-old’s tragic death. Archer had disgracefully stopped short of finding the hospital and clinical staff who oversaw her care as negligent – and therefore responsible for the serious catalogue of malpractices. Nonetheless, to some extent, it still shone a light on the paucity of safe healthcare options for people living with severe ME like Maeve.

    Significantly, Gwynne highlighted four areas in particular that the report had raised over Maeve’s care. These were how there is:

    i. no specialist hospitals or hospices, beds, wards or other health care provision in England for patients with severe ME/CFS;
    ii. no current available funding for the research and development of treatment and further learning for understanding the causes of ME/CFS;
    iii. extremely limited training for doctors on ME/CFS and how to treat it, especially in relation to severe ME/CFS;
    iv. the 2021 National Institute for Health and Care Excellence (NICE) guidelines on ME/CFS not providing any detailed guidance at all on how severe ME/CFS should be managed at home or in the community and, in particular, whether or not there is any necessary adaption needed to the 2017 guidance, Nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.

    So, Gwynne’s letter addressed each of these in turn. However, in each case, it exposed the disgraceful lack of urgency and understanding of the issues at the heart of failing NHS care for people living with severe ME.

    Funding figures a facade

    First up, Gwynne tackled the research and funding elephant in the room. Specifically, he highlighted that:

    over the last five years, the DHSC, through NIHR, has invested over £3.6 million in research programme funding for ME/CFS.

    While on the face of it, this sounds significant, at best, this would equate to £2.88 annually per patient. Specifically, this is assuming the most prolifically cited figure of 250,000 ME patients in the UK.

    However, this is undoubtedly an underestimate. It was first postulated to the UK government’s Chief Medical Officer (CMO) in 2002. Notably, this was based on a prevalence rate study from 1999. Needless to say, this makes it wildly out-of-date – it’s obvious that the number will have increased in 25 years. For one, the UK population has risen in this time.

    But more significantly, if the number had remained the same in this period of time, it would suggest people with ME had been recovering. Yet, this is simply not the case – since recovery rates remain incredibly low at an estimated 5%. Given also that there’s no curative treatment, this is obviously exceedingly unlikely.

    The National Institute for Health and Care Excellence (NICE) 2021 guidelines also uses this 250,000 figure. However, it draws this from 2018 research using self-reported ME data from the UK Biobank. Again, it’s almost certainly an underestimate. This is not least because the study is non-representative of the UK population. In particular, it only includes data from those aged 40-69 years old.

    Less than £1 per patient per year for research?

    What’s more, the coronavirus pandemic has happened since, so it’s evident that ME rates will have soared significantly in that period.

    There have been other varying estimates, such as 390,000, and 700,000 too. Taking into account this post-pandemic surge, Action for ME more recently put the number at 1.3 million people.

    In reality however, this is also invariably underestimating the true numbers of people living with ME. It too uses the antiquated 250,000 figure in its calculation. On top of this, the Canary has highlighted previously that the long Covid statistics are probably an underestimate as well.

    Nevertheless, taking this number would put research per ME patient annually over the last five years at just £0.55.

    The point is, research spend on ME was already appallingly low. But it’s also not even increasing at a pace to keep up with the numbers of people developing it either.

    Compare that too to the £3.3m annual ‘economic disease burden’, which Gwynne himself mentioned at a Westminster debate on ME in May, and it utterly pales besides this.

    All talk on training for severe ME

    Then there was the “limited training for doctors”, and “especially in relation to severe ME/CFS”.

    His answer for this was simply the NHS’s regularly-vaunted e-learning modules. It’s worth pointing out here that the Canary’s Steve Topple reviewed the second of these. Alarmingly, he found it severely lacking in multiple ways.

    Moreover, the NHS e-learning modules are NOT comprehensive guidelines – and crucially, they can’t standardise care of severe ME patients.

    Some voluntary training isn’t going to suddenly fix the dire state of hospital and community care for people with severe ME. For one, it implies that the barrier to adequate care is knowledge alone, when anyone living with ME can tell you that is fundamentally not the case.

    The deeply-entrenched psychologising stigma and arrogance of powerful medical professionals charged with their care is hardly going to shift from a non-mandatory NHS e-learning session, which frankly, many won’t have the time nor inclination to engage with anyway. And if it’s anything like the second module, it won’t be up to the task either.

    Realistically, how is this any different from leaving things as they are? ‘As they are’ is the perfect storm of proliferating problems with NHS care for severe ME that ultimately led to Maeve’s death. It could lead to many others’.

    Moreover, there’s no urgency here either. The third module’s focus is sorely needed for people living with severe ME – whose lives are most at risk. Yet, for some bureaucratic and inexplicable reason, it’s the third in line for publication. Making sure clinicians are equipped to care for severe ME patients should always have been the priority. Ridiculously however, this is all completely upside down in its priorities.

    Lack of specialist services but no real change on the horizon

    Next, the letter responded to the lack of specialist services for severe ME patients.

    So what was Gwynne’s bold ambition for this? That would be:

    • A working group “to determine if additional support can be provided to commissioners of ME/CFS services”.
    • And a stock-take of existing ME services.

    Groundbreaking stuff. Gwynne is basically saying “we’re considering” services – which isn’t close to the same as committing to actually pull their fingers out their ass and commission them.

    Realistically, it’s hard to see how this will amount to anything tangible. And it really needs to do a stock-take to find out that there’s genuinely no specialist care? If that sounds like a serious waste of NHS funding, that’s because it is. In practice, it is very much the government’s way of looking like it’s doing something, without putting in the funds and work to bring about these services.

    Because be under no illusions, when the cost becomes clear, Labour is going to drop it like a red hot public investment election pledge, and just as unceremoniously.

    For the latest community the Labour government has screwed over with a “we considered it, but it was too expensive” dupe, see the WASPI women. Tell me that’s not what this is?

    No commitment to community care

    If Gwynne’s responses on the rest of the issues raised in the report weren’t galling enough, it was off the charts level abysmal on the lack of guidelines for severe ME in the community. Arguably, this “concern”, as the letter put it, was one of the most vital.

    Without it, severe ME patients have no choice but to stay in hospitals massively under-equipped and unsafe for their condition. Moreover, like for Maeve, many are actively hostile to providing severe ME patients the necessary form of nutrition.

    The family of 18-year-old Millie McAinsh needed percutaneous endoscopic gastrostomy (PEG) feeding so she could return home from Royal Lancaster Infirmary hospital. However, the NHS had no provision in place for this in her area – meaning a private care company was the only option available.

    Meanwhile, Karen Gordon has been trapped in Conquest Hospital in Hastings, Sussex for over a year. This is because East Sussex NHS Trust has refused her total parenteral nutrition (TPN) in the community. To potentially have this in place, they’ve mandated she make the 100-mile journey to St Mark’s Hospital in London for an assessment. Needless to say, it would be extremely dangerous for Karen to do so.

    Not to mention that, when patients like Millie and Karen have gone into hospital needing this – clinicians have dismissed their ME diagnoses. In Millie’s case, and more recently, 24-year-old Carla Naoum, doctors have applied eating disorder diagnoses, and used these psychiatric assessments to section them.

    And naturally, they’re hardly the only ones. So it’s also little wonder that many severe ME patients also avoid entering hospitals altogether. Overall, it’s evident that NHS home and community care is enormously lacking, and the process to even get it is a diabolical shamble, and that’s putting it politely.

    Half-assed promises

    So, it really says it all that Gwynne allocated two piddly passages to addressing this. Not only that, but all he actually had to offer was a nod to the Royal Devon University Healthcare NHS Foundation Trust (RDUH)’s admission protocol and some half-assed pledges to update the 2021 National Institute for Health and Care Excellence (NICE) guidelines.

    It’s not nearly enough. There’s no detail about what the government will do with the RDUH protocol, if anything. But most importantly, the document itself is far from comprehensive, or sufficient for the scale of the gargantuan gap in care for people with severe ME.

    As one person living with severe ME noted for instance, there’s no detail on tube feeding for instance, or the underlying comorbidities that cause eating difficulties and gastrointestinal issues.

    So, as Topple has also pointed out before, all it will really do:

    is possibly – not definitely – stop severe/very severe ME patients from starving to death.

    In other words, it might help severe ME patients stabilise at best, but it’s not going to move any mountains to drastically help them improve. It’s also virtually no help for ensuring community and home care options are in place.

    Ignoring severe ME patients already

    For the past ten months, long-term dedicated ME advocate Sally Callow has been trying to hand the government one possible answer to this on a platter. She has called for the development of a detailed, official NHS severe ME protocol.

    The Canary has had sight of this Gwynne’s reply to Callow’s petition. In the response, he gave little indication the government would actually do anything about it. Notably, he simply said that he’d passed it onto Department of Health and Social Care (DHSC) officials. In fact, the rest of his letter reads strikingly like his response to Maeve’s coroner’s report. He references many of the same pieces of work in what can only be described as a massive government-aggrandising stitch-up.

    And let’s be clear – this was a petition primarily from over 5,000 ME patients and carers. With that letter, he effectively palmed them all off in one fell swoop. If that’s how he responded to the patient community in that instance, who really believes he’ll meaningfully engage with us on the rest he’s trumpeting about?

    The notable omission of any mention of this in Gwynne’s response to the coroner’s report speaks volumes. Gwynne could have – indeed should have – agreed to engage with this. It would be one small but significant step in the right direction. But the fact that something so obviously necessary was missing, shows how little the government is really set to heed the report’s warnings.

    Missing the scale and nature of the problem

    Ironically too, the reference to the NICE guidelines might just be the most promising part of the whole spiel. He wrote how:

    NICE has agreed to review the evidence on dietary management and strategies for people with severe ME/CFS published since the 2021 NICE guidelines were introduced, and amend guidance as needed. It will consider appropriate amendments to the guideline on ME/CFS to emphasise the need for appropriate nutritional support. NICE will work with colleagues from RDUH to determine examples of good practice to link into NICE guideline pages.

    Again though, it’s not the silver bullet. In reality, improving this guidance on nutritional support is the bare minimum, a starting point, square one. From there, so much more needs to happen, and quickly.

    Because, as Topple has also underscored, there’s no NICE guidelines for many of the disease’s common comorbidities. In particular, those that frequently seem to play a part in severe ME. These are conditions like gastroparesis or mast cell activation syndrome (MCAS) that undergird a lot of severe ME patient’s digestive dysfunctions, and eating difficulties.

    Overall, Gwynne’s letter wholly misses the scale and nature of the problem. It didn’t scratch the surface of the action that’s sorely needed.

    People with ME have rightly had enough of lukewarm words and wishy-washy promises.

    Yet here we are once more. We have another health minister and government that clearly isn’t up to the task – and doesn’t really intend to be anyway.

    Featured image via the Canary

    By Hannah Sharland

    This post was originally published on Canary.