Two of the biggest myalgic encephalomyelitis (ME) charities in the UK may be a little too cosy with a controversial organisation pulling the strings behind the clinical care for patients living with the devastating chronic illness. Action for ME and the ME Association’s close connections to it raise serious concerns over their integrity as charities proclaiming to advocate for people living with ME.
Together, the pair are sitting on over £4.7m in funds.
So as multiple reports of hospitals horrifically abusing women living with severe ME have hit the headlines, it’d be fair to ask where the hell they’ve been and why they haven’t stepped up. Crucially then, this could have something to do with their links to the British Association of Clinicians in ME/CFS (BACME) – linked to the psychologising medical establishment.
BACME: brainchild of the “biopsychosocial” lobby
The British Association of Clinicians in ME/CFS (BACME) proclaims that it is a:
multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.
Essentially, it exists to underpin ME clinics and their clinicians operating across the UK. In January 2021, it registered as a charity. Currently, the non-profit has around 200 professional members who pay yearly fees [Pdf, p8]. It regularly hosts webinars and conferences for these members to network and exchange knowledge.
BACME boasts that its charitable objective is the “relief of sickness for the public benefit”.
However, its laudable-sounding aims obfuscate a contentious history in upholding a harmful status quo. For one, the organisation was the machination of notorious members of a lobby of medical professionals hell-bent on psychologising the chronic systemic disease. Members of the ME community sometimes refer to them as the “biopsychosocial” or “psych” lobby.
Specifically, at its outset, professor Esther Crawley chaired the group. Crawley has a prolific record of endorsing treatments geared towards a psychosomatic basis for the disease. These include graded exercise therapy (GET) and cognitive behaviour therapy (CBT).
A recent Europe-wide survey demonstrated what patients that clinicians have pushed into GET have been articulating for years. In short, the so-called treatment is actively harmful to people living with ME.
Board bursting with biopsychosocial proponents
Meanwhile, as the Canary’s Steve Topple has expressed before, CBT has been no different. He explained that the treatment pushes the notion that:
people living with a very-real, viral-based illness should just ‘think themselves better’.
So of course, since its inception, BACME has been chock-full of board members promoting these very treatments. For instance, its 2018 chair Dr Gabrielle Murphy is the clinical lead the Royal Free ‘Fatigue Service’ in London. This has delivered a programme of GET and CBT to patients.
Moreover, Murphy and another BACME clinician Dr Michael Beadsworth, who leads an ME service in Liverpool, jumped ship on the NICE guidelines committee in 2021. It was in response to the revised guidelines plan to drop GET and downgrade CBT as treatments for people living with ME.
Given all this, it would be fair to assume the two biggest ME charities in the UK wouldn’t touch BACME with a barge pole. However, that is not the case. Instead, the Canary has found a web of connections between the ME Association, Action for ME, and BACME. Of course, this has significant implications for their role in holding BACME and UK clinics to account for inadequate or abusive care.
Moreover, some of these connections in particular may signify part of the reason why both have been so slow to take action in Millie’s and Carla’s cases.
The revolving door between BACME and the ME charities
First up, there’s a notable revolving door between the charities and members of BACME. Specifically, both non-profits have previously or currently employ former members of BACME as advisors.
Currently, the ME Association is employing Sue Luscombe as its honorary dietetics advisor. Luscombe runs a dietary nutrition advisory company and also works for Bedfordshire Hospitals NHS Foundation Trust. The ME Association’s website describes her as:
a leading authority on diet and ME/CFS, and Long Covid.
Luscombe was a key early member of BACME. Notably, she was formerly BACME’s dietetics representative on its executive council.
Primarily, her dietetics focus has meant that Luscombe has steered clear of the classic psychologising strands. However, there are other concerning associations.
Profiting off chronic illness
Luscombe works for Vitality 360 – a private clinic that purports to treat people living with ME. Crucially, one of the notorious PACE trial investigators, Jessica Bavinton, owns and acts as director for the company.
Tellingly, the company’s core focus is on ‘rehabilitation’ – or in other words, getting people living with chronic conditions back to work. So of course, insurance companies aren’t amiss among its clients. The company’s website doesn’t specify which insurance companies it has worked for. However, it does quote independent disability insurance consultant Monica Garcia.
Garcia has worked in various roles for the UK’s Department for Work and Pensions (DWP). On top of this, she also held a senior medical claims role with major insurance firm Swiss Re. Who has also worked for Swiss Re? Once again, PACE author Peter White.
Taken together in this context, it suggests Luscombe has also jumped on the biopsychosocial bandwagon to monetise pushing sick people into work.
BACME’s bullshit on severe ME
However, if her medical circles and affiliations weren’t enough, her work at BACME should present a glaring red flag.
In particular, Luscombe has fed into BACME guidance and some of this to potentially devastating effect.
On 9 March this year, BACME published an updated version of its “Working Group on Severe and Very Severe ME/CFS” clinical practice document. Luscombe contributed to this. As the name implies, BACME has produced this publication to advise medical teams in the clinical care of people living with severe ME.
Severe ME impacts approximately 25% of people living with the disease. In these cases, people living with severe ME/CFS are mostly, if not entirely permanently bed-bound or hospitalised. What’s more, they are sometimes unable to digest food, communicate, or process information and are fully dependent on others for their care.
Tragically, severe ME is sometimes fatal. As the Canary’s Steve Topple has documented, the disease has killed a number of people living with it. Notably, routine neglect and maltreatment by the healthcare system has often led to these tragic deaths.
So given this, appropriate clinical care – and guidance underpinning it – would seem absolutely vital. Unfortunately however, BACME’s document is riddled with causes for concern.
For instance, in a section on “common comorbidities” the guide refers to “functional neurological symptoms”. Of course, this has all the implicit overtones of Functional Neurological Symptom Disorder (FND) – once called ‘conversion disorder’. Essentially, FND is a psychosomatic diagnosis. Most significantly, doctors have weaponised it to dismiss many people with living with ME and other chronic illnesses.
Then, in another section, the document goes on to endorse clinicians ignoring the family and friends of severe ME patients. In a condescending passage of the guide, it reads:
Practitioners / carers want to find a solution to try and help make things better at that time and search for another intervention or feel they need to respond to well- meaning but not necessarily productive advice from the wider circle of family and friends.
“Disordered eating” – another psychologising diagnosis
However, the particular part of concern where Luscombe likely input, revolves around a section titled “Disordered Eating”. Ostensibly, this advocates for “psychological intervention” and implies that a severe ME patient’s inability to eat is potentially attributable to an eating disorder.
Of course, eating disorders are extremely serious. However, there is no evidence to suggest they are common in people living with ME. In fact, a 2017 study on children living with ME, did not identify:
eating disorder behaviour or cognitions such as fear of weight gain as contributing to the eating difficulties, in contrast to reports in other chronic conditions (i.e. Karwautz et al., 2008). The lack of eating disorder behaviours and cognitions lends support to the hypotheses that eating disorder behaviours are an unusual occurrence in CFS/ME and should prompt diagnostic review
Somewhat ironically, BACME founder Esther Crawley herself co-authored this research. As such, the 2021 NICE guidelines on ME do not mention eating disorders at all. Instead, in the section regarding people living with severe ME, it advises supporting them in numerous ways such as modified eating aids, alterations to food to conserve energy, as well as enteral feeding. [Pdf, p95]
Nonetheless, the BACME document pushes the notion regardless. And it’s likely that this concept, at least in part, came from Luscombe. This is evident in an ‘Medical Matters’ briefing from the MEA in which Luscombe commented that:
In my experience, disordered eating and restrictive food choice is not uncommon, especially in those with ME/CFS who are severely affected. It is essential that a good variety of food intake is encouraged to get all the adequate nutrition needed. For those who are severely affected, self-restrictive and limited food intake is a very serious concern.
Notably, there she paraded ‘disordered eating’ and seemed to suggest that people living with severe ME are “self-restrictive” – essentially – purposely choosing to limit their food intake.
So, in other words, eating disorder diagnoses could offer another way to psychologise people living with severe ME. It gives clinicians the impetus to dismiss physiological causes of food intolerances, dysautonomia, nausea, dysphagia, digestive dysfunctions, and debilitating exhaustion limiting a severe ME patient’s ability to eat and digest food.
Consequences in the real world
Cue the medical gaslighting and abuse of people living with severe ME. Unfortunately, this has been exactly the result for 18-year-old Millie McAinsh in the Royal Lancaster Infirmary. As the petition for Millie states, the hospital consultants:
don’t believe or take seriously ME symptoms and are speculating that it is a mental illness/eating disorder, even though it is stated by WHO and NICE that ME is a physical and complex neurological illness.
In other words, the doctors at the hospital have been psychologising Millie’s ME. On 4 April, an update on her situation there stated that a psychiatrist who visited believes that:
Millie is scared of the pain and symptoms that eating, walking and talking could produce and needs to be encouraged to push past these beliefs…
Meanwhile, the update explained that one of Millie’s consultants thinks that:
she is ‘choosing not to eat’ and now even though she is being fed by NG tube she is being offered food orally, she has stated that she finds this very upsetting as she desperately wants to eat but is too exhausted.
Unsurprisingly, Millie’s family has communicated to the Canary that the Royal Lancaster Infirmary has said they do not follow NICE guidelines. Instead, the hospital told them that they use BACME’s guides – and given the advice from these highlighted above, this is alarmingly evident.
Funding the future, forgetting the now
Right now, Millie’s family and friends are fundraising to cover legal and medical costs. You can donate to this here.
Meanwhile, the ME Association is throwing £90,000 at a project that might improve care for people living with ME at some point down the line. Of course, this does nothing for Millie, or Carla, or indeed the likely many other people living with ME that clinical care teams are failing right now.
As the lead for the project stated in the press release, the project aims to produce tools that:
will promote patient-centred care by helping people with the condition and healthcare professionals identify needs and concerns, plan support together, monitor progress and outcomes through NHS ME/CFS specialist services.
Once again, BACME crops up in this too. The ME Association hasn’t publicised BACME’s involvement. However, in BACME’s severe ME document’s most recent two revisions in late 2023 and early 2024, it stated that:
BACME is involved in a project which is seeking to develop ME/CFS specific outcome measures which will allow for improved standardisation across services.
A previous version of this document from prior to the ME Association’s announcement does not include this mention. Moreover, project lead, physiotherapist and retired professor of rehabilitation at Manchester University Sarah Tyson’s biography corroborates BACME’s role on the project.
On top of this, BACME board member and physiotherapist Dr Peter Gladwell is co-running it alongside professor Tyson and psychometric researcher Dr Mike Horton.
Smearing the ME community, again
Notably, members of a prominent ME forum for patients, carers, advocates, and scientists wrote an open letter to the ME Association detailing a number of their concerns about the project. For example, this includes, but is not limited to:
- The fact that the toolkit is developing subjective questionnaires as its primary focus for monitoring patient health.
- Conflating PEM with other symptoms caused by exertion
- Lack of consistent benchmarks clarifying what the questionnaire constitutes its various classifications of activity impact. For instance, what does it mean by ‘strenuous’?
Additionally, they have called out the involvement of two of the researchers.
Firstly, the group penned an accompanying open letter criticising professor Sarah Tyson’s part in the project. This was referencing a series of unprofessional engagements Tyson had made with members of the forum.
In one major instance, Tyson abruptly broke off discussions, stating:
I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved.
Of course, her hostile response tapped into a torrid history of abuse from ME researchers. In particular, biopsychosocial backers have smeared people in the ME patient and carer community for raising good faith and valid criticisms.
Despite these issues, the ME Association responded by backing Tyson as lead of the project. Largely disregarding Tyson’s conduct, ME Association chairman Neil Riley wrote in reply:
The ME Association has confidence in Professor Tyson. She has experience of the illness and knows the background to how patients with ME/CFS have been treated in the past.
You can read the full open letters and the ME Association response here.
Moreover, Gladwell’s position on the project, both as a member of BACME, but also his broader work, drew ire.
“Pacing up”
Gladwell runs the ‘Bristol M.E. Service’ – one of the NHS clinics that treat people living with the disease. On top of this, he is on an advisory group of UK government-funded research charity Cochrane.
On the face of it, Gladwell appears to stand apart from many of his peers in BACME. Notably, he has been a staunch critic of the classic biopsychosocial model of ME and has publicly opposed GET. For instance, in March, he wrote an article for the Chartered Society for Physiotherapy backing the new NICE guidelines and trashing GET.
However, some members of the aforementioned ME forum raised some pertinent concerns regardless. Most significantly, this revolved around Gladwell’s role developing successive Action for ME’s (AFME) pacing guides.
Through this guide, AFME introduces the concept of “pacing up”. In practice, it explains that this means gradually increasing activity “following the establishment of a sustainable baseline” [Pdf, p43]. Moreover, it gives an example of this, stating:
If you decide to extend an activity, do this by up to 10% and no more. For example, if you can currently manage walking for 10 minutes, try increasing it to 11 minutes
Problematically, this flies in the face of the new NICE guidelines. Firstly, these advise that people living with ME should reduce their physical activity “to be below their baseline level”. Vitally, it briefs that they should only attempt increases that stay within their “energy limits”. By contrast, ‘pacing up’ suggests a GET-lite increase of 10% straight off the bat.
Of course, the document goes to great length to demonstrate how ‘pacing up’ isn’t GET. Ultimately however, it splits hairs over the underpinning theory. As such, it fails to acknowledge that it too involves increasing activity beyond a patient’s energy envelope.
In a condition where post exertional malaise (PEM) – a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities is the hallmark symptom, this is clearly a prospectively highly harmful approach.
Co-opting pacing
Worse still, its name co-opts the only strategy people with ME have available to them to live with their condition. ‘Pacing’, as opposed to ‘pacing up’, purely encourages people living with the disease not to push past their limits. Moreover, it advises them to rest to avoid triggering PEM as far as possible.
The effects of this “pacing up” strategy is perhaps apparent from reports of patients at Bristol’s Gladwell-lead clinic. Patients of the clinic responded to a 2019 survey that #MEAction conducted on the state of ME services across the UK. The Bristol-based service garnered the largest number of respondents, with 76 of its patients taking part in the survey.
Two results stood out. Just 13 – 17% – of Bristol service users said that attending the clinic had helped them. Meanwhile, 27 – 35% – said they saw no change to their condition. The larger remaining 34 participants – nearly 45% – stated that their experience at the service had in fact made them worse.
Alongside this, a separate question identified the type of treatment the service prescribed patients. On this, the largest proportion of respondents – 28, or nearly 37% – said that the clinic encouraged them to:
first find a sustainable level of daily activities, and then to increase my activities week by week
Naturally, this chimes with Gladwell’s “pacing up” approach. The Canary contacted Gladwell for comment. While he did respond, he did not grant us permission to publish his replies to the above allegations.
Given all this, ME community member’s concern over his role on the ME Association clinical toolkit project appear warranted. A clinic lead who promotes an activity management approach premised on increasing activity should be nowhere near a project to inform and update clinical care for people living with ME.
Signposting to BACME
Naturally, AFME has more recently been out endorsing BACME-supporting services.
On 4 April, Action for ME’s CEO Sonya Chowdhury spoke on an ITV regional news segment about the state of services for ME and long Covid patients across the country.
Significantly, the news piece delved into the experiences of people accessing a new joint ME and long Covid clinic on the Isle of Man. Action for ME promoted it on its X account. In and of itself, this exchange was seemingly innocuous enough.
However, the clinic in question – Manx Care – has listed BACME guides amongst its key resources.
Ostensibly, these purport to provide “information to support clinicians in their work with people with ME/CFS”. Supposedly, BACME has updated these to align with the new National Institute for Health and Care Excellence (NICE) guidelines for ME. But as the Canary highlighted above with BACME’s severe ME guidance document, this is not the case.
Separately, the ME Association’s Russell Fleming has also previously contributed to a news story on the same clinic. Like AFME, the ME Association promoted the report and the service itself on its X account.
In response to the Canary’s allegations, Action for ME said:
Collaboration is currently a core organisation value of Action for M.E. and we will continue to work with a range of organisations and individuals, including Forward-ME and its members, to further our aim to meet the needs of people with M.E. now while working to secure change for the future.
Representatives from Action for M.E. have spoken at BACME organised events in the past. But we have not ‘backed’ any BACME conferences financially or organisationally.
We do not support GET.
In line with policy, we do not actively endorse any other healthcare providers
Back people with ME, not BACME
Ultimately, at the end of the day, the two largest ME charities in the UK have been noticeably absent at a critically urgent moment for two young women living with severe ME.
At best, after decades of their advocacy, their work has been ineffective in bringing about meaningful change. At worst, their tacit support for – or sometimes more explicit collusion with BACME, with all its accompanying biopsychosocial baggage – could have actively hamstrung sorely needed action.
What’s clear to see is that in 2024, psychologising and ignorant clinicians throughout the NHS are still abusing ME patients. In this, it appears both major UK ME charities are missing the mark. Meanwhile millions of people with ME are quite literally missing to their lives and the outside world.
Needless to say, the big ME charities cannot hold the psych lobby and abusive health services to account by getting into bed with them. But if that was never their intention, what good are they really to people with ME dying right now at the hands of these very oppressors?
Instead of bowing to the people abusing people living with ME, it’s time for the big ME charities to bow out of backing BACME for good.
The Canary contacted the ME Association, BACME, and others included in this article for comment, but did not receive a response by the time of publication.
Feature image via Hannah Sharland
By Hannah Sharland
This post was originally published on Canary.
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