The BBC - "Acu Seeds are not intended as a cure for any medical condition" Well what's the point of them then? The centrepiece of Giselle's pitch to the Dragons was "I recovered from ME" ... and Acu seeds. If Giselle's 'ME recovery story' was taken out of her pitch to the Dragons - what would be left? These ear seeds ... insomnia, headaches, back pain knee pain .... that just doesn't have the same glitz as "recovered from ME" .
To be fair, I suspect it was the randomest part of her story: "a doctor told me I wouldn't have children".. and then having a child... that I think was the aspect that actually was the most 'persuasive'. People really don't care about ME that much, and that was 'somewhat novel'. I'm also very curious that it was in no way - given nowhere is it written as a common symptom due to ME - that this 'claim not a claim' wasn't interrogated by the BBC as that is such a vulnerable topic matter for women in general who are desperate to have children, are much more understood and empathised with by the BBC etc and I personally felt there was a thinly veiled assertion there also. In fact the 'now I have a child' vs 'recovery' which we know for BPS means nothing, given they use the claim to mean worse than before they entered a trial (and she isn't back in her previous role demonstrating she can do what she did before) I think was her speaking to certain demographics in numerous ways on a topic one perhaps have to be even more careful on regarding claims?.
Yeah, Giselle said Drs told her she would never recover, never work again, and never have children. And she proved them all wrong. Except no one with ME in the UK has ever been told by Drs that they won't recover, will never work again and will never have children.
I would, except that they've already stated they're sending the same response to everyone (see the letter that @tornandfrayed posted in #211). It's a waste of time and energy unless someone with more clout gets involved.
In 2000 I did manage to find a doctor, a neurologist in private practice with a special interest in ME, who said I would not recover and would not work again, though this was six years into my ME when I was looking to take ill health retirement which required I had a condition that was such that I would never work again. Now twenty four years later, when I am less than a year from retirement age, this has turned out to be accurate. However I agree it would still be unlikely for many UK doctors to say this, most would anticipate recovery but not commit to a time scale, however it is almost inconceivable that a doctor would say a woman with ME could never have children especially given that for most, all other things being equal, this would be patently untrue.
https://twitter.com/user/status/1752283031744708655 ME Association @MEAssociation @TheBAcC :Statement on ear seeds for CFS/ME – Dragon’s Den "At present, we are unaware of any clinical research that has evaluated ear seeds alone for CFS/ME. From a traditional acupuncture perspective, the ear seeds need to be located precisely on specific points. Therefore, it is not possible to self-administer the ear seeds." Read the statement in full here: https://acupuncture.org.uk/news/statement-on-ear-seeds-for-cfs-me-dragons-den/ #pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #BBC #DragonsDen #EarSeeds #AcuSeeds #Acupuncture #BritishAcupunctureCounci ------------------ https://acupuncture.org.uk/news/statement-on-ear-seeds-for-cfs-me-dragons-den/ Statement on ear seeds for CFS/ME – Dragon’s Den Back to all news|29 January 2024| Following the recent episode of Dragon’s Den in which a contestant presented a proposal for an ear seed business the BAcC has received inquiries about this form of therapy and acupuncture for myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS). The current evidence-base: acupuncture ME/CFS In the last 20 years a considerable amount of research has been conducted into acupuncture. However, the majority of the high-quality clinical trials have investigated chronic pain conditions such as: low back pain, headache, osteoarthritis of the knee and shoulder pain. These have been compiled in individual patient data meta-analysis that indicates acupuncture is effective for these chronic pain conditions, the benefits last for at least a year and is not purely placebo effects (Vickers et al, 2018). Unfortunately, chronic fatigue syndrome has not been investigated to the same degree. The studies that have been conducted are often of low quality. The vast majority of studies have been conducted in China. This creates an extra layer of difficulty in assessing the relevance of this evidence to people in the UK. The number and frequency of treatments given in Chinese studies is often higher than typically given in the UK. As many people must access acupuncture privately the expense can limit the number of treatments. The recent systematic reviews suggest that acupuncture may be beneficial for those with chronic fatigue syndrome (Factsheet). However, these reviews also note that until high-quality clinical trials are conducted, it is not possible to be confident in these results. CFS and traditional acupuncture CFS/ME is a complicated condition. The BAcC represents practitioners fully trained in the traditional theories. This is a holistic practice. A traditional acupuncturist does not base treatment on the diagnosis of ‘chronic fatigue syndrome’ or ‘myalgic encephalomyelitis’. They will take a full case history and arrive at a diagnosis using the traditional theory. This diagnosis is called 证 zhèng. Zhèng is usually translated as pattern. Even for conditions where the signs and symptoms are fairly consistent, such as osteoarthritis of the knee, patients can be diagnosed with different zhèng-patterns. This means that patients with osteoarthritis of the knee we will get slightly different treatments depending on their overall signs and symptoms. CFS is far more complicated, beside the tiredness there may be other significant symptoms such as pain, headaches, insomnia, flu-like symptoms. A standard Chinese medicine textbook may list 20 zhèng – patterns associated with tiredness, 17 with headaches, and 9 associated with insomnia. Therefore, people with CFS/ME will often receive different treatments. Whilst there is some overlap, different acupuncture points will be selected depending on the pattern. In addition, some of these patterns may require the use of moxibustion not just needles. This is a complicated issue and probably can only be fully understood through studying the traditional theories. However, hopefully, the central point is clear: there is no one-size-fits-all treatment for conditions such as chronic fatigue syndrome. The evidence from China suggests that combinations of acupuncture and moxibustion plus Chinese herbal medicine may lead to the best outcomes. It may well be that an integrated approach, where individuals select the modalities that they find most useful, is the best way forward. However, this level of complexity does not readily fit with the current gold standard research of randomised controlled trials. Ear seeds and ear-acupuncture At present, we are unaware of any clinical research that has evaluated ear seeds alone for CFS/ME. The clinical research conducted in China uses body acupuncture as the first line treatment which is often combined with moxibustion. Ear seeds may be used as an adjunct to the acupuncture treatment. From a traditional acupuncture perspective the ear seeds need to be located precisely on specific points. Therefore, it is not possible to self-administer the ear seeds. The advantage of ear seeds is that they are held in place by tape and can remain in the ear for days. Once in place, people can stimulate the points themselves by pressing the seeds. Conclusion Unfortunately, due to the lack of high-quality clinical trials it is currently not possible to draw firm conclusions about the benefits of acupuncture for chronic fatigue syndrome. However, the evidence that does exist indicates that acupuncture and moxibustion may have positive benefits. For those with chronic fatigue syndrome, who are interested in trying acupuncture, we recommend finding a BAcC practitioner who will be able to tailor the treatment to address your ‘zhèng-pattern’. An initial course of four to six treatments should enable you to gauge whether acupuncture is beneficial for you. To assess the benefits of acupuncture in the UK setting, it is essential that high quality clinical research is undertaken. This will require funding. The British Acupuncture Council is willing to collaborate in research projects with universities, charities, government bodies. British Acupuncture Council The British Acupuncture Council (BAcC) guarantees high standards of training, safe practice and professional conduct. Look for the letters MBAcC after the name of your acupuncturist to be sure of: extensive training – minimum three years degree level – with relevant western medicine including anatomy and physiology adherence to the BAcC codes of safe practice and professional conduct compliance with current health and safety legislation full cover for medical malpractice and public/products liability mandatory continuing professional development to keep knowledge and skills up to date The BAcC is an Accredited Register with the Professional Standards Authority for Health & Social Care (PSA). The PSA protects the public by overseeing the regulation and registration of healthcare professionals – including statutorily regulated professions, such as the Nursing and Midwifery Council, and Accredited Registers like the BAcC. This offers a quality mark for high standards of training, safe practice, and professional conduct. Statutory regulated healthcare professionals, such as member of the General Medical Council, can use Accredited Register status as an assurance the safety and quality of care provided when making referrals.
Hat tip to Twitter/X's Katy B @KatyBruce108 for contacting the British Acupuncture Council for a statement.
This is a pretty bold statement. I don't think the audience understands that all. I'm pretty sure Dragon's Den has invested in medical devices and treatments before (hopefully with sound evidence) and customers' decision to buy these things or services is at least in part based on the approval of a trusted source - the BBC. I think there is the concept of "the reasonable person" in law and that here "the reasonable person" would infer that the "the healing journey" is being claimed to have caused the recovery. We know that lots of family and friends of pwME took it that way and contacted the pwME, including @Andy. Some of them were excited about this new "cure" for ME & when the pwME tried to put them right they accused the pwME of not wanting to get well. Even if the BBC thinks there is enough blurring of the message to comply with advertising standards legislation, it has a duty not to mislead, even unwittingly. People were being misled, and it could be argued deliberately. Without the implied medical claims this product is nothing but overpriced temporary jewellery.
The British Acupuncture Council's statement has been posted on Steven Bartlett's Twitter/X account. Others have shared the statement on his Linkedin account, his Instagram account and on the 'AcuSeeds' Instagram account.
Even if they do, the BBC seems to be wilfully ignoring the fact that (a) sick people are very vulnerable to exploitation, and (b) people with poorly understood conditions are often gaslit by everyone from their own family to their doctor, so it's profoundly unhelpful to suggest recovery is easy and within their grasp. The show's producers have a duty to understand this, and frankly I don't believe they don't. When programmes feature something affecting a particularly vulnerable group, their interests should be defended. It's not even hard to do; someone could have challenged the story about recovery, mentioned the absence of evidence for the treatment, talked about N=1 experiences, etc. If the BBC neglects this, they're not maintaining balance. [Edited after posting, with further wording added after gaslighting.]
https://twitter.com/actionforme/status/1752342501124448278 Action for M.E. @actionforme Action for M.E. was very concerned to see that the quote provided in the Daily Mail attributed to our medical adviser Professor David Strain, who has since confirmed he was misquoted. David has asked us to issue a statement, which you can read here: https://ow.ly/pWbu50QvSpp #pwME 2:46 PM · Jan 30, 2024 --------------------------------- https://www.actionforme.org.uk/news/response-to-quotes-provided-by-professor-david-strain/ Response to quotes provided by Professor David Strain January 30, 2024 Action for M.E. was very concerned to see the quote provided in the Daily Mail attributed to our medical adviser, Professor David Strain. David who has asked us to issue the following statement: "I am very disappointed to see that I have been misquoted and to witness the harm and concern this has caused within the M.E. community. I was very explicit that there is no cure for M.E. and, even worse, that exercise is harmful and should not be prescribed as a treatment. The intention of the interview was to highlight how difficult it is for people living with this disease to get the diagnosis. When a person with myalgic encephalomyelitis is listened to, however, and learns to avoid triggers such as physical or mental exertion or some high histamine foods, some people may experience a level of improvement in symptoms. My quote implied that people may be cured with lifestyle and dietary changes. This is not what I said and is contrary to the fact that there is no scientifically proven cure or treatments for M.E., and even those who achieve remission are prone to relapses."
Canada's Dragon Den 2018 'This is snake oil': Scientists don't buy balance-boosting clips featured on Dragons' Den UPDATE: Health Canada informed Marketplace today that it has required NeuroReset to stop selling three more of its products (Neuro Connect One, Neuro Connect Lifestyle, Neuro Connect Golf) because the company doesn't have the necessary medical device licences. NeuroReset's Mark Metus told Marketplace his company is working with Health Canada to ensure the full compliance of all its products. The deal fell through after the taping, when the dragons do their due diligence, but the company said it has sold more than $100,000 worth of product since the episode aired — four times more than before the company's national television debut. https://www.cbc.ca/news/business/quantum-wellness-clips-marketplace-1.4513382
'Moral responsibility' Joe Mimran, founder of Joe Fresh and Club Monaco and one of the dragons who went in on the deal, admits it's easy to get caught up in the moment when the cameras are on.
Wait so the assertion of the acupuncturists association is basically the same as the "GET has to be done with the supervision of a GET specialist", even though there's actually no evidence that it makes a difference. In fact that any type of exercise, or even activity, makes any difference. Heh, that's funny. Although that's not quite fair, there's at least one, maybe two, studies that show that GET specialists actually have worse outcomes since they push to ignore PEM, which is the main problem. Hey it's clearly not a genuine Moon healing stone if it hasn't been blessed by a certified Lunatic shaman, with a fully paid license of course, in a properly conducted Moon ritual performed under a full Moon. What's so hard to understand about that?!
Exactly. Due diligence done afterwards, not before; and even then, not by the broadcaster. They think it's fine to light the blue touch paper and stand well back.* Spoiler * Well-known phrase that used to be printed on fireworks sold in Britain
'The Dragon's Den debacle shows we urgently need more research into ME/CFS' 'The Dragon's Den debacle shows we urgently need more research into ME/CFS' (msn.com)
As this new article on MSN suggests toward the end, if nothing else, Dragon’s Den has driven awareness of ME, and, prompted articles such as this - which, I hail as the best article I’ve ever read regarding ME (surpassing the Mirror piece last week) in my relatively short time with this blasted illness - would otherwise never have been written. Edited: duplicate posting of the link, but, my comments still stand.
https://www.mirror.co.uk/tv/tv-news/my-daughters-severe-killed-dragons-31989464 EXCLUSIVE: '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 By Ellie Fry Deputy Online Features Editor 12:10, 31 Jan 2024 A grieving mother has blasted Dragons' Den after they allowed an entrepreneur to peddle an 'ear seed' product that she claimed helped her recover from ME. Clare Norton is the mother of Merryn Crofts, 21, who became the second person in the UK to have myalgic encephalomyelitis listed on their death certificate after passing away in 2017. The fun-loving drama student spent the last three years of her life bed-bound and weighed just five stone when she died, just days after her birthday. But last week, the BBC allowed businesswoman Giselle Boxer on hit-show Dragons Den to promote an 'ear seed' product that she claimed helped her recover from ME. Ms Boxer had previously claimed that ME sufferers are "stuck in a negative mindset" and are "bogged down with their condition. In 2017, a coroner ruled that ME triggered gastrointestinal failure in Miss Crofts, who effectively starved to death. The landmark inquest concluded that her cause of death was starvation caused by a withdrawal of supportive nutrition, caused by ME... ...Charities immediately warned after the Dragons' Den episode aired that they have 'serious' concerns that Ms Boxer's Acu Seeds pitch was showcased as a 'cure' for ME. Currently, there is no cure for the disease, nor any medical evidence to support ear seeds - a form of needle-free acupuncture - as a viable treatment. As outrage over the episode grew, the Mirror revealed that Ms Boxer was personally invited onto the programme by producers, despite having previously claimed that ME sufferers are "stuck in a negative mindset" and are "bogged down with their condition". The BBC then pulled the episode from iPlayer last week after the ME Association reported Acu Seeds to watchdog the Advertising Standards Agency. But the broadcaster now claims to have "addressed concerns" with an edited version of the episode. A new on-screen disclaimer appears in white text, which many argue isn't accessible over the white hue of Ms Boxer's outfit. It reads: "Acu Seeds are not intended as a cure for any medical condition and advice should always be sought from a qualified healthcare provider about any health concerns."... ...Many in the ME community are furious at the BBC's move, as they believe the adaptation does not go far enough to protect vulnerable people, desperate for relief, from purchasing a product with no medical backing. They also say that Ms Boxer's claims entrench a 'baked-in' stigma around the heavily misunderstood and chronically underfunded disease. The broadcaster has been hit with nearly 500 Ofcrom complaints. ...Clare says that she was disgusted by the Dragons' Den episode, warning it perpetuates the "damaging" idea that ME isn't a serious illness and can be cured by alternative treatments. She believes Ms Boxer's claims play into the same stigmas that her daughter faced right up until her untimely death, as Merryn's severe ME was never taken seriously by doctors. Slamming the Dragons' Den pitch, which saw all six investors offer up cash without pressing for medical evidence... ..."Just putting a disclaimer on the episode is disgraceful because nobody invests £50,000 into something that isn't going to sell. They don't care whether it's going to work or not, but they think it's going to sell. And that's so wrong." [This is a very long article]
The point I'm making isn't about ME and children particularly - it is about how people find that the idea of not being able to have children (which people understandably wouldn't ask the reason for) is something others are in that situation for and others really would claim to be sympathetic for It happens to be another area where there is sometimes lots of 'advice', and I don't know the regs on that. So she managed to roll together a lot of excuses/sidesteps but I'm curious the BBC didn't pick up on the 'and now I can have children' bit because whatever they think of ME, there are implicit claims being made regarding the children claim too. And that is a highly sensitive topic others could have read all sorts into (again nothing to do with ME)
