Moved post Merryn Croft's mother, Clare Norton, has spoken at length to Ellie Fry of The Mirror. A very powerful and sad article. https://twitter.com/user/status/1752667046049956227 "Merryn Crofts’ life was cruelly robbed by severe ME. Now her incredible mum is calling for the BBC to take further action on the Dragons’ Den ear seed scandal" The Mirror - 31/1/2024: 'My daughter's ME was so severe it killed her - Dragons' Den ear seed scandal is a disgrace' 'The BBC's decision to reinstate a Dragons' Den episode with controversial, unfounded medical claims has sparked fresh outrage from the ME community. Clare Norton is disgusted by the decision after tragically losing her daughter Merryn to the disease in 2017' https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464 .
Very good and important article. I'll first note that I looked up the author Ellie Fry and that she wrote the opinion piece on this on 26th Jan ( 'Dragons' Den scandal has caused untold damage to vulnerable viewers - pulling episode is not enough' - Ellie Fry - Mirror Online ) which was very good, seriously 'gets' the real issue re: how damaging this is (and isn't just about some silly ear seeds). I'm impressed. That 26th Jan article included the important lines: "Myalgic encephalomyelitis, or ME, is a long-term, multi-system illness that impacts a person's functional ability and quality of life. There is currently no cure, and the path towards finding one has been blocked for years thanks to chronic underfunding and a reluctance to give up bad science that harms patients. This isn't some casual cock-up from the BBC - Giselle's claims have entrenched the very stereotypes that charities, patients and experts have been desperately warning against for years. Campaigners fought for decades to break free from the long-held misconception that ME is a psychiatric illness rather than a physical disease. Thankfully it is now widely recognised that ME is far from purely psychological, but the consequences of these views are sometimes fatal. Take Sophia Mirza, who died of complications due to severe ME and faced abusive treatment just before her death. She was forced under the Mental Health Act to undergo psychiatric treatment at a mental hospital after doctors dismissed her physical symptoms. Sophia deteriorated significantly and died shortly after being released. An autopsy found that her spine contained a massive infection. Merryn Crofts also tragically died just 10 days after her 21st birthday, after suffering from severe ME for six years and weighing less than six stone. Charities say she was only 'vindicated' in death after doctors dismissed her symptoms for years. The battle against psychologization isn't the only fight that the ME community has had to endure. For years doctors clung to the notion that graded exercise would help ease symptoms, and it's caused irrevocable damage. One government-funded 2011 trial reported that all patients needed to do to overcome the disease was "think positively" and exercise." For this article I wanted to pull out the following which I think are the very important points in individual stories vs the 'what's harmful about saying think positive/bogged down' (fake innocent face) that need to be being driven home around ME: "As Merryn's health deteriorated, Clare fought tirelessly for answers from doctors, paying for a private ME diagnosis before finding a "brilliant" NHS doctor who specialised in the disease. After finally finding someone who took ME seriously, Clare's hopes were dashed, as Merryn's NHS hospital team would "never listen" to the ME specialist because he wasn't in-house or local to their area. Clare, 55, from Rochdale, Greater Manchester, told the Mirror that her daughter faced failings in her medical care at every turn. When Merryn couldn't breathe properly at the beginning of her diagnosis, doctors repeatedly told Clare her daughter was just experiencing panic attacks. Merryn was also wrongly diagnosed with conditional disorder and dysfunctional disorder which, as Clare puts it, insinuated that her daughter's illness was "all in her head". Medical professionals also pursued the idea of an eating disorder, despite Merryn tragically "begging" doctors for a feeding tube because she wanted to eat, but couldn't physically swallow or hold down food. Clare explained that when her daughter requested a feeding tube, one doctor cruelly told her "You have one, it's right here" while pointing to his mouth. Heartbroken Clare had to watch her daughter fade away as ME stole her bodily functions, all while doctors tried to insist that Merryn's symptoms were psychological - despite the World Health Organisation (WHO) deeming ME a neurological disease." I have rarely seen someone manage to properly nail and hold accountable, even if just in a piece of writing, those who do this nasty 'psychologising' (but its just plain misogyny and hysterical woman and nothing to do with 'good intentions' or wanting to help) to the outcomes and consequences of what they have chosen to do. Noone holding them accountable with a direct line from their 'it's just a game what's the harm' or 'ignore me if you don't like my suggestions' crap, to the permission and encouragement given to those around them to do the same in attitude, to the direct abuse (is there another word for the refusal to treat where it is needed and insistence on harmful behaviour towards where it obviously hurts collection of things that can happen to those with ME?) and harm done to patients by others. And to the outcomes. I'm very glad that someone is beginning to thread these actions together and start trying to pin these personality types - and 'organisations' - to accountability and make people look at what their words or claims or decisions could be doing. To start to actually have to look at themselves rather than deflect or change what the issue is 'because it is fun to get away with it' or 'you don't want to be seen as being wrong' instead of seeing it as a chance to learn and grow (and that being better PR long term).
EDIT: I have split this bit off as it was a bit long This is important because those dirties with these mindsets I have watched telling themselves (or writing in comments) that those who died didn't do so directly from these things - I think the term is 'bartering' when you try and muddy 'if it really was something else' or 'that straightforward' and does ME really kill and so on. Sometimes this becomes even worse after the consequences occur, as a way for them not to face 'could have done something differently' and rewriting history not even with the agenda to further the meanness but because they have to believe further in these delusions and make up more to not face what could have been different but has actually happened. But they did, they died and it was because someone went on TV and encouraged those who decisions that will affect their lives to think of them as certain stereotypes that were 'unworthy' and 'something strange', or wrote articles making sure the stigma didn't drop and so on. That is one of the few 'causal' things in the whole BPS. The whole group of people get away with choosing the wrong beliefs because when pulled up those around us 'don't see the issue' and stand by us to the obvious doesn't add up thinking 'because of all of these constant PRs'. They spoke over the very few proper experts who exist and enjoyed that voice that took away the existence of those others' truth. And the consequences weren't just visceral robbing of identity, or scamming out of a few quid, just people having their friends and supporters removed 'now they think they just aren't positive enough by virtue of being disabled' but physical life-long and life-threatening harm in some cases. None of this rumour-spreading is accidental, innocent or for any purpose that is good. And if it isn't allowed for it to be spread as propaganda then even those without empathy would find others look at them strangely or correct them ie they wouldn't be so confident to say such plainly out of order myths. Otherwise such individuals would have the due care to have talked to those who genuinely had the condition for a long time to check a good time after anything was tried - anything else is callous indifference as to whatever the actual consequences are of their claims. And when said individuals are trying to speak to warn and that same person tries to metaphorically put a hand over their mouth by spreading ideas that infer that they aren't to be listened to/their testimony doesn't count (for whatever reason) that is another offence, done in order to 'not hear' and is bigger than just callous indifference
This is fantastic. I've copied the following: "This interpretation of ME as a purely psychiatric illness by two men took the wind out of early research into the condition’s physical causes and gave energy to psychological treatments, with devastating consequences ever since. My mum graduated from medical school in 1984, the same year that ME was joined by a second name - chronic fatigue syndrome (or CFS). Wider society was led to believe that sufferers were simply a bit tired from the stresses of modern life, with the media printing pieces about ‘yuppie flu’ - suggesting that ME/ CFS was becoming a fashionable diagnosis among young, educated high-achievers. Patients were disregarded, as Maya Dusenbery wrote in her book Doing Harm, framed sneeringly as ‘feminist “superwomen” trying to “have it all”’. I’m so glad to have been raised by one such superwoman, who has never stopped striving to live her life to the full. My mum first fell ill in 2005. She went from a brilliant, unstoppable force - with a 20-plus year career as a doctor of sexual and reproductive health, passionate about horse riding and always there for her family and friends - to being relegated to bed for hours, days and weeks on end. Over time, as the muscles on her slim frame wasted away, every hug became a tangible reminder of how much had changed. While there have been many moments of hope, she has not yet fully recovered. In the two decades since, I’ve witnessed so much misunderstanding of ME/ CFS. This is fatigue far greater than the tiredness of a late deadline, party or intense gym session. It’s exhaustion that reverberates to the bone - that won’t necessarily fade after a night’s sleep, like an iPhone battery that never recharges above 20%. Its severity varies greatly. While a quarter of sufferers are housebound or bedbound - possibly forced to use a wheelchair or live in the dark - others, like Cher, can attend the Oscars. Symptoms can also ebb and flow in intensity, so you may unknowingly walk past someone battling the condition in the street because it’s a ‘good’ day or they’re using up their precious 20% ‘battery’ to shower and get some fresh air. A small proportion can recover to work on a business pitch for a TV show." I feel so grateful that some of these longer articles are getting written and getting out there. I selected the following because it includes: - the important trail of how people have been sold a pup by those who were to put it bluntly misogynists with no good intentions but a load of deluded bluster (which has become today's modern day bluster) which has direct links to why the situation is what it is for pwme now. That responsibility and accountability reminder for anyone who quotes these things without stopping and thinking is vital. - she has reminded human beings reading this of their duty as a human of basic respect to others. And has emphasised that these individuals are more than worthy of respect in accurate descriptions of who they are and what they do before ill and at varying stages of illness - they are individuals and people, not objects to have suggestions stuck on them as 'ill people' (and to me the nonsense of this 'positive looks like x' tosh hopefully being debunked as much as the idea people with cancer had to go around saying they are 'fighting' with a smile on their face for people to accept they are fighting every day and are optimists) - she has remembered to square the circle about why we see this sort of thing happen. Which I hope will help with the issue the world will always have that a few individuals who are of the type who 'internally attribute when it is good/externally when bad' types (and others should know this from work and who takes credit for mistakes vs successes) will tend to end up believing their fortune - either in getting the support network who allowed sufficient rest, or just being 'one of the 5%' (or whatever it is) - can't help but mislead themselves it must be a sign of their own personal brilliance vs those who don't get better.
EDITED: split this part off due to length on previous comment. I'll be honest that one thing getting up my nose about Boxer, and people like this is that they claim 'recovery' but don't go back to their old careers to demonstrate it (and that has a lot of parts to it, including the science issue, and BPS terming of what 'recovery' is - does having to give everything up if you don't have a cosy alternative become an acceptable 'treatment/management strategy' that even if it worked meant ME never deserved science or real treatments like other conditions to make the 'norm' of this possible?). As someone who put a smile on my face as my body screamed whilst I had to continue a probably not dissimilar job to hers whilst I had ME that was moderate and got worse (and optimistically hoped for good things career-wise and good outcomes healthwise from proper developments - and did my best to try and manage by health vs role and other things), it's frankly hard to believe that the people who criticise the need for rest around trying to keep that show on the road for me, could then suggest 'her positivity' is either greater or made the difference - she isn't doing that job/life still, so it proves little more than backing up it being unsustainable with ME (and the ear seeds don't seem to have got her back there). Is what she did/does actually more positive? Because all I can see is that if you end up 'not ill' vs 'ill' (or just say you aren't ill is enough) the lies anyone might suggest about what you do or did mattering/being why they treat you how they do don't add up. ie it's plain disability bigotry (don't be ill), hidden with 'excuses' (no it's not, she just tried more things, or whatnot nonsense). She is being 'rewarded' not for 'being positive' (which she isn't with what she is saying, she's just tried to label it as such but look closely), I assert, but because she is saying tropes/unkind things about ill people. I'll go so far as to say that someone claiming to be of the same group doing it, also makes everyone who wants to bigot feel better just like if you had another minority and got a 'token x person' to agree and say 'x's just have an attitude issue because I'm fine'. And I think that is what is being defended here .... is the idea there is anything different behind it. And by unpicking and putting 'respect' next to each person mentioned in this article the author is doing something very important to show this up as 'not deserved' and nothing to do with the target or any of their traits and everything to do with a societal issue and one in readers who accept/like this sort of thing. And that is what I would like the BBC - who I know does navel-gaze on these 'conundrums and concepts' more than most other organisations would - to be looking in the mirror and discussing. Rather than pretending it's the first concept of this type it 'still can't see'.
On the ME Association FB page (Public) in response to the Mirror article today, Trevor Hedley has made a good catch: “ Ellie Fry You really must write a book about this you have the passion, motive, talent and I suspect courage to do it.,another wonderful piece of work. Personally I would love to see the whole sorry history of the ME/CFS mismanagement as a documentary. Just a word on the the BBC statement saying that Dragons Den is an entertainment and does not constitute an endorsement at 42.02 of the YouTube version of the programme, just as she is leaving the room, the voice over states Quote: "And it's smiles all round as the entrepreneur not only bags the dragon she came for. BUT A FULL HOUSE OF ENDORSEMENTS AS WELL" “ This part in bold seems very pertinent to the BBC’s assertion that the programme is not an “endorsement”. Also, Trevor later makes the point that if the programme is intended as “entertainment”, then how dare they use an illness like ME as that entertainment! Could the BBC perhaps explain exactly what it is that they find entertaining about this programme?
HARD TO BELIEVE: In Kent (UK), the NHS advocates and pays for pure quackery "After the nationwide huha created by the BBC’s promotion of auriculotherapy and AcuSeeds, it comes as a surprise to learn that, in Kent (UK), the NHS seems to advocate and provide this form of quackery." https://edzardernst.com/2024/01/har...the-nhs-advocates-and-pays-for-pure-quackery/
Very good article. One small error: My mum graduated from medical school in 1984, the same year that ME was joined by a second name - chronic fatigue syndrome (or CFS). The CFS label was formally introduced in March 1988 with the publication of the Holmes criteria. According to PubMed there is one paper using it that was published in November 1987. Interestingly there is also a paper in Italian from 1959 using that term, but I suspect that is a retrospective relabelling/translation. There is no abstract for it, and I don't speak Italian anyway.
https://harrogatecancerservices.nhs.uk/health-and-wellbeing/complementary-therapies/ Harrogate and District Cancer Services Auriculotherapy (ear seeds) Many drugs and therapies, including hormone related medications are an effective way of treating cancer, however they may have significant side effects including hot flushes, night sweats, sleep problems, anxiety and depression, racing heart and palpitations. Ear seed therapy has been demonstrated to considerably improve or even eradicate some of these problems in some patients. The treatment is safe and gentle and once started you may be able to manage to apply the ear seeds yourself at home, reducing the number of times you need to visit the hospital or clinic. The treatment uses some of the same points we would use in acupuncture but no needles are used. Instead tiny beads of a natural mineral called vaccario are applied with sticky tape to apply direct pressure to the points. This makes the treatment particularly useful for those patients who cannot have needles due to blood problems and phobia.
Did those Dragons even see ME as a disabling disease at all? Here one of them clearly sees ME as a 'challenge to be overcome'. That's the poisonous message of the program. Dragons Den guest , footballer Gary Neville to Giselle Boxer at 37.07 “... I'm gonna offer you all the money you asked for for the percentage that you asked for, 10%, because you deserve it. You've not only had challenges but you've overcome those challenges … and that's everything that I would want, and I'd love to be a business partner of yours” https://www.bbc.co.uk/iplayer/episode/m001vfsz/dragons-den-series-21-episode-3
From that exchange, it sounds more as if he's congratulating her for being determined to do the couch-to-5k challenge or lose weight. Just think what we could achieve if we were better, more deserving people!
According to The Mirror, the ASA has gone pretty much straight to enforcement on Acu Seeds.. https://www.mirror.co.uk/tv/tv-news/dragons-den-ear-seeds-scandal-32015953
C That final line you quoted needed to be said. Plus investors going after other investors that they think give them a bad reputation is preferable to when they close ranks. But…. His repetition of the lack of knowledge on the product or what it was supposed to do, imputing peoples ( the intended marks and the hawkers) intelligence then claiming he wasn’t saying anything about intelligence, wasn’t saying what he’d just said, evidenced according to him by the fact he then went on and enlightened us all (he seemed to assume his audience wasn’t familiar with such language conventions) on the term “**** Money” being a technical term in financial circles. Yeah mate. Why was an ableist slur of old used to describe or used against non-verbal Deaf people and then people with Learning Disabilities, actually chosen by big money at all? And wasn’t **** also used as a “technical term” by medicine when referring to non-verbal Deaf people in the first place? So a technical term for Deaf and or disabled people which is now used to describe ignorance at the level of world altering accumulation? Not so much of this money, I hear, is going towards keeping disabled people (including workers who’s labour the system rests upon) alive and well, not so disabled people in positions of power to influence the systems in a different direction, so it’s nice we get to be included in their lingo at least huh? /s His analysis came across as if it were stated from a position of wishing to protect the virtues of capitalism and not have its good name tarnished by the most obvious scammers. Damage limitation for the financial industry. Also for the medical system which actually, my friend, we aren’t all choosing to op out of in favour of alternatives, we are having the door slammed in our faces. His focus was toward the ignorance deliberate or otherwise of investors. Look investors are going to do things that are self-interested, “that’s capitalism baby”. I get he doesn’t like having that so publicly on display. Shaming an/a few individuals for abandoning their moral compass in favour of capitalism is a nice release valve on a personal level, for frustration with the evils (material consequences) of capitalism. But it doesn’t change anything on a meaningful scale by itself. Its doesn’t save lives. I mean….How’s it going waiting for those in power to be more considered “intelligent” or moral in their quest for accumulation? Our(me and this guys judging by his accent) countries expectancy is going down at present, the health service is collapsing. Sure a less evil investment culture would’nt hurt. But it wouldn’t change the fact someone’s got to pay for our access to the wonderful products that they may or may not produce, and that means less profit or more tax on the profits for investors and they have a legal obligation to resist such a change. So perhaps we’re not all in this together, how ever smart or savvy we all presume ourselves to be? I’d say it’s not been a rip roaring success tbh for us. I am so glad he felt like people with ME required more than being shamelessly scammed on national television to come to wellness. But he points the finger in the wrong place. Neither the seller nor the circling investors could inflict the damage that they have without being held up and advertised to the nation by the BBC. The overpriced ear seed lady could have reached GOOP goals on her own. No need to accelerate such a process. Not in the public interest I’d say. She wasn’t targeting bored rich housewives and movie stars. She went for the cohort of sick people who famously struggled or fail to maintain employment, and so are judged unworthy by society of medical treatments. But no matter, the numbers of people with Long Covid induced ME patterns are going to make up for any shortage of disposable income on an individual level with sheer numbers. Well meaning parents and kind older relatives are going to gift them to younger people, most likely women or girls who, when asked will likely say that the overpriced seeds help them feel better, out of association of the gift with love which makes us all feel better, or guilt for requesting the buzzed up pretty trinkets. This act of the BBC to throw us to wolves feels no different to the endless platforms given since at least the 1980’s by our national broadcaster to others who make their careers and financial security at our expense many of them working within the medical profession, public and private. While there exists incentives to exploit, people abandoned and made vulnerable to exploitation, and the BBC or other media outlets platforming the exploiters especially when placing them in positions of high esteem while doing so, but really any publicity is good publicity, ignoring or misrepresenting or giving occasional low ratio access for the exploited, and exhibiting great scepticism towards the exploited, searching out and presenting loopholes to justify the process and virtue of actors and acts of exploitation, exhibiting the exploiters as savours of those that they exploit. As long as this continues the exploited remain exploitable. Even if one favours capitalism as system and hopes to benefit from it personally, it is reasonable, to note how easily it tilts towards non-benevolence at present, there could be restraints placed upon the system that didn’t include expecting people with much to gain at a material level through ignorance or the display of ignorance, to learn and display knowledge to their own financial detriment. If the incentives are good enough a certain percentage of people will serve themselves at others expense. But that’s a hundred percent of us really, “no ethical consumption under capitalism” I’ve heard. Agriculture is renowned for labour abuses so it may be the growers of those seeds that are most impacted by this development. Edit:added final paragraph.
This. I don't blame the young woman involved, who for all I know sincerely believes her ear seeds brought about her recovery. I don't even have a problem with acupuncture. It's the provision of advertising of a quality and impact that can't be bought for love nor money, free of charge and without the regulatory hoops a company selling another product would have to jump, followed by the shrugging-off of all responsibility.
The voice commentator on the BBC DD ear seeds program *did* say on air that "the entrepreneur bagged herself a Full House of Endorsements". The BBC Did endorse the product. “And it's smiles all round as the entrepreneur not only bags for herself the Dragon she came for, but a Full House of Endorsements as well” Dragons Den episode at 41:51 https://www.bbc.co.uk/iplayer/episode/m001vfsz/dragons-den-series-21-episode-3 .
This woman is well into adulthood. Being a woman isn’t really a good defence when you’re climbing over the mournful childless bodies of your sickly sisters to get yours. She has her part and certainly isn’t behaving honourably. If she really thinks the ear seeds are a viable treatment option for an illness with famously few treatment options, why the extortionate mark up beyond the means of most sick and disabled people? Why the appropriation of an ancient and sacred, healing, modality from another culture, and claim to be improving upon it? Her personal problems or vulnerabilities aren’t our business. But through her exploitation of our vulnerabilities as sick and disabled people she has made her lack of morality our business. She didn’t have to but she did it nonetheless. If people blamed her that’s because she is to blame. But what becomes a problem is when we allow ourselves to be distracted hoping or dreaming of an alternative reality where people who were once sick don’t rehabilitate themselves into society and maintain material success through exploitation of those who remain sick. One day, but not for now. But you’re on the money @Kitty , something priceless the BBC offered freely to those seeking profit at our expense, at our societies expense. Instead right now today the organised bodies of our society could serve to champion our interests rather than those of those who seek to exploit us. Such public bodies could ensure that healthcare needs are already met such that we wouldn’t be a market for exploitative practices in the first place. So yeah first and foremost we are not put at risk so much by individuals as institutions that uphold dangerous individuals and money making practices at the expense our society.
The must be some ambiguity about whether the BBC is endorsing the product in a legal sense as they would not have taken the show off line, presumably consulting lawyers before adding their disclaimer and then putting it back on line. If the BBC are unambiguously neutral about the product, why then the need to add a disclaimer. Even if the BBC can not be said in a legal sense to be endorsing the product, they still broadcast the programme knowing that they were giving it tremendous national and potentially international publicity, knowing that all the ‘dragons’ by wanting to invest also effectively endorses the product. Participating in the programme gives any retailing company an enormous boast over and above any decision by individual investors deciding to put up their cash and expertise. So even if the BBC are not in a legal sense endorsing the product they are very much doing so in an ethical sense. Also it seems to me that there are further issues of concern about the production team’s role. Firstly Ms Boxer is reported as saying that she was approached by the BBC and invited to participate rather than initiating contact herself, surely upping any ethical responsibility on the part of the BBC. Secondly it is also reported that an independent acupuncture practitioner raised concerns with the production team about the ethics of this business model before the programme was made. Surely the BBC has some responsibility to undertake due diligence before putting forward something being implicitly marketed as a medical device/product. It is also of concern that the ‘dragons’ have previously with other companies/medical products asked questions about accuracy of any medical claims or any evidence for their efficacy, but did not do so with these ‘ear seeds’. Further I found it bizarre that in this instance the Dragon’s extolled a business model that they have at least once before rejected as unsustainable. This ear seeds business is retailing at an enormous mark up a product freely available from a number of other retailers at a fraction of the cost. This business had no exclusivity and at any point in time they can be undercut by other businesses getting in on the act. I do feel that the BBC and the Dragons also have questions to answer about why they seem to have treated this business differently to others. I would argue that this apparent giving the ear seeds an easier ride than other companies gives the BBC further ethical responsibility. (added - I suspect that the BBC (in house production team), as others have suggested, simply did not see the ear seeds as a medical device and perhaps did not even see ME as a biomedical condition. So they felt that absolved them of the need to undertake due diligence.)
