Transcript of this podcast – Dragon’s Den, M.E./C.F.S., and Stigma.
Ear Seeds _ Dragon’s Den
Sat, Jan 20, 2024 10:34AM • 20:18
SUMMARY KEYWORDS
M.E./C.F.S, Giselle, claims, recovery, recover, programme, pitch, dragon, work, people, den, cure, broadcast, life, disease, chrysalis, alternative therapies, symptoms, CFS.
SPEAKERS
Sally Callow – Stripy Lightbulb CIC
Hello, welcome to Lightbulb Moments. In this episode, I’m going to talk about a recent broadcast of Dragon’s Den. Anyone that doesn’t know, entrepreneurs pitch to a range of multimillionaire dragons and ask for investment in their business. It was an episode that was broadcast on the 18th of January. But the online promotion of it started on the 17th of January. So, we had about 24 hours warning that M.E. or CFS was going to be mentioned within Dragon’s Den the following day. We didn’t know exactly what was going to be said. But there were claims that the products that the entrepreneur was trying to get investment for helped with recovery from M.E.
The furore started on the 17th of January because anyone that works for/lives within the ME/CFS community knows that there are no effective treatments or cures. Any claims that alternative therapies helped somebody to recover should be seen as dubious and you should be sceptical because there is no scientific proof that any of them work. I should make it clear this is not a comment about Giselle the entrepreneur’s recovery, I do not doubt that she was bedbound for a period of time. I don’t doubt that she had a diagnosis of M.E or Chronic Fatigue Syndrome. But what I do doubt is that any of the interventions that she claims have led to her recovery worked. The reason I think that is because it is known, research has shown us, that around 15% of people that meet M.E. diagnostic criteria get better within two years of onset, that happens naturally, irrespective of any interventions that those people have done, participated in. Some may say, oh you know, I went on regular walks. I saw a Reflexologist for a few months, I started the keto diet. There is no link between one person’s experience of recovery and another. None of these people have anything in common. And scientists have yet to work out why these people recover. I’m also very happy that Giselle has recovered, that’s not what this podcast is about. The issue is the claim that these Acu Seeds, which are based in acupuncture, aided her recovery
Deborah Meaden tweeted in response to the backlash on the 18th of January,
‘You need to watch the pitch, Giselle neither claims it’s a cure or recommends it as such. She simply tells of her story and the many things she changed in her life, one of which was Acu Seeds.’
Now I’m going to read to you the pitch. Thank you very much to the person with M.E. who created the transcript. I can’t remember your name off the top of my head. Apologies.
This was the pitch –
‘Hi, my name is Giselle. And I’m the founder of Acu Seeds. Today I’m asking for a £50,000 investment for 10% of my business. Four years ago, I was diagnosed with M.E.. I went from working in a top advertising agency with a busy social life and exercising regularly to being mostly housebound and unable to walk more than five minutes without having to get back into bed. I was told by doctors that I would never recover, work again, or have children. I went on a personal healing journey using diet acupuncture. Chinese herbs and ear seeds. Using this combination, I believe, aided my recovery within 12 months. Soon after I fell pregnant and whilst on maternity leave, I set up Acu Seeds, after realising there was a gap in the market for ear seed kits for people to use at home.’
I don’t know how Deborah Meaden can say that Giselle was not claiming that the seeds aided her recovery because that is literally what she said in her pitch ‘using this combination, I believe, aided my recovery within 12 months’.
To make it clear, I am not a sceptic where alternative therapies are concerned. I am a qualified Reflexologist, I had to give up Reflexology because of my M.E, it took far too much of my own energy to give treatments. I have also used holistic and alternative therapies to relieve my M.E. and other chronic illness symptoms. So, I’m not a sceptic, but there is zero scientific proof that these ear seeds lead to recovery. Giselle is literally an N=1 example of how ear seeds work. The M.E. community has been looking at the Acu Seed website in the last couple of days and there are no reviews stating that other M.E. patients, who have been customers, have recovered as a result of these Acu Seeds.
I’m a social entrepreneur, I’m a fan of Dragon’s Den, and I’ve watched to see how to deliver good pitches over the years. I am a massive fan of Dragon’s Den, I embrace entrepreneurial spirit. I have successfully pitched for funding for Stripy Lightbulb CIC in the past and would support any disabled person with entrepreneurial ambitions. But there are no effective cures or treatments for ME/CFS. Since the broadcast, too many people living with M.E. are posting that they have either bought these Acu Seeds due to the claims of recovery, or family members have spoken to people living with ME/CFS about this product and suggested that they buy them to recover. This is the real world impact of that broadcast. Stripy Lightbulb CIC strongly believes the fact that this was aired without first doing due diligence is telling. Did the research team not believe that M.E. was a serious disease and therefore didn’t do background checks? It demonstrates a lack of knowledge on this complex fluctuating neuro-immune, multi-systemic and often disabling disease. Imagine saying that pitch that I’ve just read out but replace ME/CFS with MND – ME/CFS and MND are both neurological, both impact nerves, cause lack of functionality, and they’re both categorised as neurological diseases – sounds ridiculous, doesn’t it? That’s why the ME/CFS patient community find it so offensive. Because when you replace the word ME/CFS with MND or even cancer, because M.E. can sometimes be fatal. And in terms of quality of life research has shown that people with very severe M.E have a worse quality of life than somebody living with late stage cancer or late stage renal failure.
The narrative that ME/CFS is curable by alternative medicines isn’t new. Companies have been reported to the Advertising Standards Agency (ASA) for false advertising before such as the Chrysalis Effect. I’m going to read you now the judgement from the ASA on the Chrysalis Effect from July 2022. They said –
‘The ad must not appear again in the form complained of. We told Chrysalis Effect Limited to ensure they did not make claims that their programme could aid in ME/CFS recovery or full clinical recovery from ME/CFS unless they have sufficient evidence to support the claims.’
We believe that the same should apply in this case. In the past couple of days, numerous ME/CFS international scientists have commented on these Acu Seeds and they can’t see how they could possibly help a patient to recover from ME/CFS. They also query how effective they would be in symptom relief. But the most telling thing is acupuncturists have tweeted ‘I think that’s stretching it…..don’t think these Acu Seeds can help with a complex neurological disease.’ It should be said that the Acu Seeds website has now been edited. Steven Bartlett, who was the dragon that invested in this business, promoted on social media yesterday that the team was meeting up for the first time and they were starting work. One of those work tasks was clearly to ensure the website did not make false claims about recovery from ME/CFS. I’m going to read you what the website said first and what it says now.
Okay, so first up what the website said on the evening of the broadcast –
‘Our founder. Acu Seeds was founded by Giselle Boxer who was diagnosed with Chronic Fatigue Syndrome or M.E at the age of 26. When her GP told her that she would never recover from the condition, Giselle went on a personal healing journey using a holistic approach of diet, supplementation, but most importantly, traditional Chinese medicine. Through the use of acupuncture, Chinese herbs and ear seeds. Giselle is now fully recovered and thriving.
What it says now it’s been edited, the first sentence is the same. But then it states –
‘when her GP told her that she would never recover from the condition. Giselle went on a personal healing journey using a holistic approach of diet supplementation, but most importantly, traditional Chinese medicine. Giselle believes that acupuncture Chinese herbs and ear seeds played a huge role in reducing her symptoms.’
Changed from claiming that it helped in her recovery to now just ‘reducing her symptoms’. Here at Stripy Lightbulb CIC we strongly believe that’s because of the backlash. Because Dragon’s Den is now aware that the M.E. Association has reported this business to the Advertising Standards Agency for false advertising. Literally covering their backs by updating the website however, unfortunately, Giselle also appeared on Look North yesterday, which is a local news programme, obviously they’re using it as a local news story. Look North showed Giselle on camera claiming recovery due to Acu Seeds and other alternative medicines. So not only was Dragon’s Den broadcast on Thursday evening, but Acu Seeds also appeared in a local news programme. Giselle admitted on Look North that she’s now sold in 24 hours what she would normally sell in a year.
Stripy Lightbulb CIC has been very vocal about the fact that ME/CFS cases have more than tripled in the UK and internationally since 2020 because of COVID-19. There are now an estimated 1.25 million people in the UK that have M.E. or CFS. Depending on whether the GP knows how to diagnose M.E. they may well have given a CFS diagnosis. So that’s 1.25 million people who could see that programme/product, some will know the science and they know it won’t work, but others are desperate to get better, particularly people that have been newly diagnosed. If you see someone that says ‘I had M.E. I’m now better because I did this.’ you are likely to be so desperate that you buy it. And it doesn’t matter what caveats are now added to the recording. I don’t doubt that the episode will be….well I hope ….will be edited on the BBC iPlayer, to say actually it doesn’t lead to recovery, but it does help with symptoms. It’s too late. Hundreds of thousands of people will now think ‘oh this will help my friend who’s just been diagnosed with M.E.’.
Why does this matter?
This is why our training courses include stigma as a topic. I have no doubt that this Dragon’s Den issue will be a huge setback in terms of stigma experienced by people living with the disease. Stigma makes having M.E. much harder to have. In our training, we feature a video to show the kinds of things that people suggest to us all the time in terms of ‘this is how you can get better’. People with M.E/C,F,S are asked ‘have you tried…. diet/ lifestyle changes/ therapies /yoga,/exercise…?’ Giselle herself mentioned diet, lifestyle changes and therapies in the segment on Dragon’s Den. We also get ‘you’re not trying hard enough’. In fact, Giselle was called ‘inspirational’ by dragons during the programme because she overcame challenges. She ‘overcame M.E.’ You cannot overcome M.E. because there are no treatments or cures. If you get better, you were going to get better whatever action you did or did not take. That does not make someone that recovered from M.E./CFS ‘inspirational’. And also it implies that ME/CFS is not a significant disease – Acu Seeds and something as simple as acupuncture pressure points can cure it.
I have to stress ME/CFS can be fatal, too many are dying from this very poorly understood disease. I would ask anyone listening to this – anytime you watch or read anything that mentions Myalgic Encephalomyelitis also known as Chronic Fatigue Syndrome (M.E.C.F.S) – I ask that you swap ME/CFS for MND, as you’re reading it or watching it as a kind of offensive test. If you cannot say the same for MND or cancer it simply won’t work, and isn’t a treatment or a cure. People living with M.E. have the lowest quality of life of many complex diseases. You have to remember that whenever you read or watch anything that includes ME/CFS in the media. The M.E community now need a retraction or apology that has exactly the same public reach as the programme. I don’t mean a small caveat at the end of the programme when most people will have turned over. And I don’t mean only on BBC iPlayer because people that have already watched it won’t watch it a second time. But you need…. dragons, I’m speaking to you direct….. please go to the media and say we made a false claim…. Giselle…. it may have improved symptoms but we cannot claim that it’s helped her recover because that is simply untrue (scientifically unproven). She is an N=1 example, as I’ve said already, she may well have gone on to recover naturally anyway and it was entirely coincidental that she was having these lifestyle changes, diet, etc. There are millions of people that have tried these same things and they have not worked. That’s why this Dragon’s Den broadcast is a huge issue. I thought I’d be proactive and talk about it in a podcast rather than sending tweet after tweet after tweet in the hope that dragons see it. Anyone that wants to know what ME/CFS actually is, please do our training. It’s here, it’s not full of medical jargon. It is easy to understand, and I’ve designed it so that the general public, employers, people that aren’t medically qualified can understand what ME/CFS is, in the hope that a greater understanding and increased level of knowledge will reduce the stigma and will lead to improved lives of ME/CFS patients.
Please get in touch with me if you work for the BBC, if you work for Dragon’s Den. If you want to help me get the word out a little bit further. I’d be very grateful. Thank you very much for listening. Take care.