If you live with myalgic encephalomyelitis (ME), know someone who does, or just happen to use social media, you cannot have missed the storm over the Acu Seeds product that appeared on Dragon’s Den. People are rightly furious. So, the Canary is supporting a campaign group to help people complain to Ofcom about the BBC.
However, this story isn’t as straightforward as that. This is because at its heart, you have a decades-long drama of psychologisation, lies, fraud – and a society that has accepted all of this as truth.
Acu Seeds x Dragon’s Den: what’s the problem?
In short, Giselle Boxer was a entrepreneur on Dragon’s Den; the episode which aired on 18 January 2024. She was pitching ear seeds: an acupuncture-style treatment but without the needles. Boxer claimed that these, along with full acupuncture, diet, and Chinese medicine, helped cure her ME. Her story and the pitch ended up securing six dragons making offers. Boxer eventually went with Steven Bartlett.
The corporate media initially lapped the story up – glamourising Boxer, her story, and her business. However, there was also an immediate backlash from people living with ME. Namely this was because there is no recognised cause, treatment, or cure for the illness.
Moreover, the severity of ME means that ear seeds are highly unlikely to change it.
ME: it literally kills people
At its worst, ME – a a debilitating and poorly-treated chronic, systemic neuroimmune disease that affects every aspect of the patient’s life – has killed people in its severest form. As the Canary previously wrote:
In 2021, Maeve Boothby O’Neill died from severe ME at the age of 27 after the NHS essentially let her starve to death. Doctors denied her a feeding tube, and later denied total parenteral nutrition, which likely would have saved her life. An inquest into Maeve’s situation is ongoing.
ME’s main symptom is post-exertional malaise (PEM) – a severe worsening of other symptoms after any form of physical, mental, and/or emotional exertion. This can leave a patient bedbound for days, weeks, months, or sometime permanently worsen their health.
Plus, people were angry as ear seeds are not a placebo-tested treatment, nor is there any research into their effect on ME. In short, many people said Boxer was selling snake oil.
Yet despite all this, the BBC reportedly approached Boxer to go on the programme – and then allowed her to pitch without any caveats for the audience about her product or ME. Moreover, it’s now come out that a rival firm allegedly warned Dragon’s Den that Boxer wasn’t a trained acupuncture therapist. If this is true, then producers ignored the individual’s concerns.
So, before getting into the detail of the story, what can people do right now over this?
Complain to Ofcom in just a few clicks
Well, campaign group the Chronic Collaboration is doing what used to be called a Twitter storm, on Wednesday 24 January at 8pm. Using the hashtag #DragonsDenConnedME, it wants people to tweet at @Ofcom, telling it to investigate the Dragon’s Den episode and why it must:
While we were recently howling at the moon, we came to a revelation: #DragonsDenConnedME
Dragon's Den must be investigated by Ofcom over #AcuSeeds
Please join us Weds 24 Jan 8pm GMT during #MEAwarenessHour to tell @Ofcom to investigate the show using #DragonsDenConnedME. More: pic.twitter.com/YsSPaqN1XT
— @TheChronicCollaboration (@TheChronicColab) January 22, 2024
Now, the Canary has got involved. We are supporting the Chronic Collaboration, and the ME community, to go one step further.
Below, you can enter your details and send a pre-formatted complaint letter directly to Ofcom via email. There’s more information on this further down the article. Your details are secure, as per usual Canary GDPR practices. You can click in the “Read the Petition” box to read the email. Please make sure you fill in all the details. You will get a copy of the email:
#DragonsDenConnedME: write to Ofcom to complain about Acu Seeds
So, Acu Seeds has caused a storm. Yet it’s not really Boxer who is at fault, here.
Don’t shoot the Acu Seeds messenger
We live in a (capitalist) society that encourages the individual to prioritise their own wants and desires over our collective wellbeing as a species. So, on that basis who wouldn’t flog some bits of tat with a five-day shelf life on the internet for a 900% profit margin? Boxer is – buying the Acu Seeds for £3 and selling them for £30.
Moreover, some of the discourse we’re seeing online about Boxer is uncomfortable, at best.
A stranger on social media does not have the right to question whether someone’s illness was or is genuine – nor question the decisions they make about their health. To call Boxer a con-artist, for example, lowers yourself to the same level as the psych lobby (Simon Wessely et al) who helped foment the notions of modern-day malingering in the first place.
Boxer clearly was unwell. We should not be debating that – as we need to do better.
Moreover, chronically ill people ripping into other chronically ill people without substantial evidence is just playing into the hands of the forces that would seek to divide us – like the aforementioned psych lobby. We’ve seen it before, with the Sickness and Lies documentary. All witch hunting does is end up making everyone witches; all targets for a good dunking or the fiery stake.
By all means we should question her product, her company/commercial ethics, and her business practices. However, Boxer personally is not the target, here.
The BBC: in the thick of it, as always
The blame for this particularly horrific episode lies solely with the BBC.
It should not have invited nor allowed Boxer on the show at all – given she was selling Acu Seeds under the guise of them “aiding [a person’s] recovery [from ME] in 12 months” (her words). To say that this is irresponsible would be an understatement.
The BBC‘s Editorial Guidelines state:
The reporting of risk can have an impact on the public’s perception of that risk, particularly with health or crime stories… This is particularly true in reporting health stories that may cause individuals to alter their behaviour in ways that could be harmful. We should consider the emotional impact pictures and personal testimony can have, particularly on perceptions of risk.
This is the Dragon’s Den/Acu Seeds debacle in a nutshell. Boxer’s claims on the programme could encourage people living with ME, their friends, and their family, to believe that Acu Seeds could treat or cure their illness. This may lead to severe psychological distress (when Acu Seeds don’t work) and potential health side effects (due to Acu Seeds not having been medically tested).
It seems unfathomable that the BBC let Boxer and Acu Seeds on. Would it have allowed an entrepreneur to pitch Acu Seeds as a treatment for cancer? For dementia? It is highly unlikely. Yet after the episode, the resulting chaos was equally unfathomable.
The fallout: round in circles we go
The fallout from the episode has been predictably painful to watch, as well. It goes something like this:
- Corporate media/government/institution betrays, smears, and undermines chronically ill and disabled people.
- Corporate media (not involved in point one) fail to spot this.
- Chronically ill and disabled people campaign on social media for days to try and control the narrative.
- Charities finally stop navel-gazing and issue a half-arsed press release.
- Said press release isn’t up to the job, and the corporate media that do pay attention to it flunk the story – calling ME, for example, “extreme tiredness”, failing to say it kills people etc.
- Narrative is still out of control.
- Chronically ill and disabled people thank said charities, as they know their limp response is as good as it’s going to get.
- Chronically ill and disabled people wait for the next scandal.
- Go back to point one and start the process again.
Bored of this yet? You’d be right to be.
Charities and corporate media: the worst kind of bedfellows
For example, yes the major ME charities sent out a press release – but it was one that followed a PR/comms template from circa 2015. That is – it clearly left journalists with no knowledge of ME to write the story, with the actual press release being mostly just commentary around the programme and its consequences – hence “extreme tiredness” lifted from the NHS website.
When ME is systematically misrepresented in the media, charities should be on point when they interact with journalists. Any press release needs to be a ready-to-go article that includes the definition of ME, correct descriptions of symptoms, commentary about severe ME and how it kills people, and so on – all with links to research to back up these claims.
As journalists, the Canary knows that if we got that kind of press release then we’d print most of it verbatim – ergo the narrative around ME in the article would be correct for the community.
In 2024, when many journalists are now ‘churnalists’, content is driven by SEO requirements, and AI is infiltrating newsrooms – anything less than a press release that is actually a pre-made, fully formatted article is going to cause problems for the people it’s supposed to represent.
The charities should know this – if they bothered to get their heads out of the 2010s. Seemingly, they don’t, as one charity admitted on Facebook. Yet still, they beg people for money and patients are supposed to be grateful for their advocacy. It would be hilarious – if it wasn’t so pathetic.
What to do about Acu Seeds, Dragon’s Den, and the BBC?
Unfortunately, so far what needs to happen hasn’t. That it, the BBC has not issued an apology, held itself accountable for its dire error of judgement, nor put out a prominent statement explaining that Acu Seeds will in no way work as a treatment for ME.
There might be a way to force the broadcaster to do that.
What we can do immediately – after the Chronic Collaboration did some digging in legislation from 1996 – is complain directly to Ofcom. Hand-wringing statements from charities and weak corporate media coverage won’t hold the BBC to account. Only Ofcom can do that.
Ofcom’s website makes out you can’t complain directly to it about the BBC – you have to complain to it, first, and then got to Ofcom. However, that is not strictly true. The regulator’s rules (buried in guidance) around fairness and privacy complaints about the BBC create a loophole to circumvent this – which is what the Chronic Collaboration has done.
So, here once again is the email you can send to the broadcasting regulator making a formal complaint about the Acu Seeds episode of Dragon’s Den.
#DragonsDenConnedME: write to Ofcom to complain about Acu Seeds
Blame the organ grinders, not the monkey
However, none of this gets to the root of the problem either. This is because, ultimately, a group of producers at the BBC knew so little about ME (and therefore by association other illnesses like long Covid), that they didn’t see the problem with Acu Seeds in the first place.
So, we’re back to that enduring question: who are the real villains in this saga? As with Boris Johnson’s long Covid “bollocks” scandal, it’s the people who have psychologised physical health in the first place.
As the Canary previously wrote, the idea that a physical illness can actually have a psychological cause (‘all in people’s heads’) has seeped into society’s consciousness. The notorious PACE trial – a fraudulent study which claimed exercise and talking therapy could cure ME (they can’t) – was one part of this. However, the psychologisation of physical illness runs far deeper than just that alone.
When will ME stop being ‘all in people’s heads’?
From ME to Gulf War syndrome and now via long Covid, psychiatrists have actively fomented this belief – and the mud has stuck. The Acu Seeds scandal has been another example of just how a falsehood can be fed to society as the truth – and society dutifully believes it.
The BBC platformed Boxer because producers didn’t even see the problem – because ME is ‘all in people’s heads’. The corporate media initially praised Acu Seeds – because ME is ‘all in people’s heads’. Then, that same media called ME “extreme tiredness” – because… you know what comes next.
Until the idea that illness can be ‘all in people’s heads’ is consigned to the dustbin of medical history, then we have to keep fighting back every time it rears its ugly head. With Acu Seeds, this is making sure the BBC is held to account – sadly, until the next time ME is stigmatised and delegitimised, and patients are thrown under the bus.
Featured image via BBC iPlayer
By Steve Topple
This post was originally published on Canary.
