Dragon’s Den accused of  being a scandal and a disgrace

A Dragon’s Den programme on BBC TV on 17 January 2023 featured a business selling acupuncture ear seeds that Giselle Boxer said helped her on her journey of recovery from ME.  A strong backlash followed as sales of acu seeds soared and people in the chronic illness community spoke out with deep concerns about the impact of this unproven treatment.

Here is a selection of what people felt and said:

Hollie-Anne Brooks in Digital Spy (19 January)

Would the BBC allow a show to go out which claimed jelly babies cured heart disease? Or taking up crochet would fix a broken leg?

What was shown on television for several minutes has collectively cost those of us with ME, days and days worth of energy, filling in complaint forms and having unneeded conversations with people about the reality of living with our condition.

Dr Charles Shepherd, Hon Medical Advisor for the ME Association in Digital Spy (19 January):

“The way in which Dragons’ Den has been used to promote an unproven treatment for ME/CFS has, not surprisingly, caused a great deal of upset and concern in the ME patient community.

“People with ME/CFS are fed up with the way in which products like this are regularly being promoted when there is no sound evidence from proper placebo-controlled clinical trials to confirm that they are safe and effective.

ME charities in a letter to Dame Caroline and Mr Brine (22 January)

This episode of Dragons Den demonstrates how misleading information can make its way to even the most trusted forms of media. We feel it is important, in your roles as Chairs of the Culture, Media and Sport Committee and the Health and Social Care Committee respectively, to investigate the role of media in promoting unfounded health claims and the impact this has on our health and safety.

Zoe Young, ear seeds competitor in Daily Mail (24 January):

 Zoe slammed the show as ‘very damaging’ for ME sufferers and legitimate acupuncturists’.

‘She had come along into the market as a social media expert, no background in traditional Chinese medicine,’ she said. She added that ear seeds ‘absolutely cannot cure anything chronic’ but said the portrayal of them on the show is ‘damaging’ because they can help other ailments.

Dr Nighat, on ITV’s This Morning (25 January)

The way it seemed to be portrayed was that this was a cure for ME – something that was offered on such a prestigious show like Dragon’s Den such as ear seeds  – a lot of my patients contacted me off the back of that going, ‘is this something I can consider?’ … however there is no evidence-based data to suggest that ear seeds work.

Steve Topple, in the Canary (25 January):

Campaign group the Chronic Collaboration did what used to be called a Twitter storm, on Wednesday 24 January at 8pm. Using the hashtag #DragonsDenConnedME, people were tweeting at @Ofcom, telling it to investigate the Dragon’s Den episode. Now, the Canary has got involved. We are supporting the Chronic Collaboration, and the ME community.

BBC news (27 January):

The BBC has edited an episode of Dragons’ Den following complaints about a wellness business it featured. A text statement is now displayed on screen while Ms Boxer is seen pitching her Acu Seed business. 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.”

The British Acupuncture Council in a statement (29 January):

At present, we are unaware of any clinical research that has evaluated ear seeds alone for CFS/ME… 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.

Dr Edzard Ernst, alternative medicine researcher, in Femail, reported in Daily Mail  (29 January):

‘To give severely suffering patients false hope is unethical; to take money from it is despicable, in my view.

‘I am disappointed that the BBC uses a light entertainment programme for misleading gullible consumers and desperate patients. I hope in future the BBC might do a minimum of research before broadcasting overt medical nonsense.’

Rebecca, a TikToker who shares videos about her ME, reported in Daily Mail (29 January):

‘As if it’s not bad enough she’s bragging about buying them for £3 and selling them for £30, with her gigantic gross and net margins, well it turns out she’s also selling people in her club snake oil’.

Lauren Clarke in Women’s health (31 January)

ME/ CFS upended my mum’s life at the age of 45, when I was 12 years old… In the two decades since, I’ve witnessed so much misunderstanding of ME/ CFS. ‘The cruel branding of ME/CFS as “mass hysteria” changed the course of my mum’s life forever’ ‘The Dragon’s Den debacle shows we urgently need more research into ME/CFS’

The Advertising Standards Authority, reported in the Mirror (31 January):

An entrepreneur on the show had “likely” broken advertising rules. Pro-science group The Good Thinking Society wrote to the ASA to complain about misleading claims on the Acu Seeds website.

Clare Norton, whose daughter Merryn Crofts died of ME/CFS aged 21 in 2017, in The Record (31 January):

Claims made by Ms Boxer entrench a ‘baked-in’ stigma around the heavily misunderstood and chronically underfunded disease. Clare warned the episode was “damaging” and said Ms Boxers claims play into a stigma her daughter faced.

She said: My heart sank when I saw it, because I knew it was going to be so harmful for the ME community. It still feels like we’re fighting that same old battle. Trying to convince people that this is a serious, debilitating illness that kills. And it’s not all in your head. If it was that easy to cure ME, nobody would be suffering from it.”

Dr Ben Miles, Physicist, Entrepreneur & Investor in a video podcast (31 January):

I wish she was pedaling something real that actually gave people hope and delivered on it. We desperately need more entrepreneurs solving the many problems that we have in this world and many more investors supporting game-changing Technologies. That’s what I wanted to see here. Steven and the dragons teaming up with the best and the brightest to build solutions that offered real hope. If we celebrate false Solutions and commoditize on that hope with no intention of actually delivering on it we aren’t deploying that incredibly privileged position and resource appropriately and in fact we are detracting attention from the real opportunities that could move the needle forward.

Dr Katherine Seton, researcher in The Conversation (2 February):

“the reality is that ME patients face a complex, long-term medical condition without hope of a quick recovery” “

ME patients are desperate for effective treatment, especially given the historic lack of health system support for the condition. A serious under-investment in rigorous biomedical research into ME has meant that the illness remains somewhat of a mystery. The absence of proven or effective treatments has created an environment allowing unproven treatment claims to thrive and potentially mislead vulnerable patients.

Dr Charlotte Blease in The Critic (3 February):

“Pseudoscience exacerbates the burden of disease – victims of ME deserve better than dopey Dragons and ear seeds”. ME has been “the subject of considerable naysaying, cynicism, and outright ridicule for decades.”

Sorrel Kinton in The Skeptic (7 February)

The choice for sufferers isn’t between proven, evidence-based medicine and alternative medicine, it’s between alternative medicine and nothing. As much as it feels like a betrayal for someone to win the crapshoot of recovery or extended remission and immediately turn around and try and profit off the people they left behind, it’s hard to fully blame them. I understand wanting to feel like you have the answer, like you have power over an illness that in your heart of hearts you know could creep back in at any time and destroy your life all over again.

Graded exercise therapy should not be recommended for patients with post-exertional malaise

Major researchers from the US and Europe – including Todd Davenport, Carmen Scheibenbogen and David Putrino – have replied to Fedorowski et al’s Review, which supports the use of GET with long COVID patients.

“As clinicians involved in the care of, and research into, patients with long COVID, we endorse the statement that the recognition of CVAD (cardiovascular autonomic dysfunction) is essential to the adequate management of long COVID. However, we cannot agree with the recommendations for graded exercise therapy for people living with long COVID who have post-exertional malaise.”

Post-exertional malaise is a constellation of disabling signs and symptoms, which mainly begin after physical and cognitive exertion. Post-exertional malaise is characterized by a delayed onset after exertion, and the period of recovery from exacerbations of post-exertional malaise can be prolonged and can severely limit daily functioning.

…Up to 85% of chronically and severely ill people living with long COVID can have a combination of post-exertional malaise and CVAD…

Landmark research showed that exercise in people living with long COVID is significantly associated with abnormal immune and metabolic responses to exercise in skeletal muscle compared with healthy control participants.

Therefore, graded exercise therapy should not be recommended for people living with long COVID and post-exertional malaise… people living with long COVID and post-exertional malaise must be supported in keeping daily activities within their available fund of energy or ‘energy envelope’. We advise a ‘do no harm’ approach. All people living with long COVID and CVAD should be assessed for post-exertional malaise.

Read the full article:

Graded exercise therapy should not be recommended for patients with post-exertional malaise, by Femke Christina Ching-Chuan van Rhijn-Brouwer, Merel Hellemons, Michael Stingl, Kathryn Hoffmann, Joanne VanDerNagel, Todd E Davenport, Eva Untersmayr, Carmen Scheibenbogen & David Putrino in
Nature Reviews Cardiology (2024)

There is a reply to this letter by Fedorowski, A. et al. Nat. Rev. Cardiol. https://doi.org/10.1038/s41569-024-00994-3 (2024).

Our understanding is that, in some cases, a standard approach to physical exercise might potentially harm patients with a still poorly defined susceptibility to post-exercise energy depletion. We apologize for our lack of clarity. Our intention was to raise awareness of this special subgroup of patients among those who have post-COVID-19 cardiovascular dysautonomia, rather than to promote the training programme in an indiscriminate way.

We, the authors of the Review, see many patients with POTS in our clinical practices, and each of us has seen patients who had initial worsening at the onset of an individual training programme, but who improved during follow-up under careful supervision by professional staff. Importantly, this approach is supported by the NICE guidelines³.

Why do some people still think ME/CFS is psychological in nature?

A recent article by a team of researchers in Germany and the USA – including Manuel Thoma, Leonard Jason and Carmen Scheibenbogen – provides a clear summary of why the view that ME/CFS is a psychosomatic illness is inconsistent with results from biomedical research.

ME Research UK provides a useful diagram of the biological abnormalities that research has found in people with ME/CFS:

Biomedical studies summarised in the research paper provide further evidence that it is biological abnormalities that lead to symptoms in ME/CFS, rather than dysfunctional thoughts and behaviours as believed by proponents of the psychsomatic model suggests. For example:

Studies have shown that there are biological differences in the way the body responds to physical activity in people with ME/CFS compared to those without ME/CFS. People with ME:

• have been found to switch more quickly to less efficient anaerobic metabolism;
• take much longer to recover from the same amount of exercise as healthy controls – 2 weeks compared with only 2 days for healthy controls;
• after exercise have alterations in gene expression –  meaning that their body seems to be responding differently to the exercise compared with healthy controls; ME Research UK recalls there also appear to be differences in gene expression following exercise between males and females with ME/CFS.

Evidence has shown that decreased blood flow to the brain in the upright position is not correlated to physical fitness – and therefore is not caused by deconditioning.

What can be done to ensure ME/CFS is treated as a biological illness? 

• Fund more high-quality biomedical research into ME/CFS
• Better education for health professionals on ME/CFS
• Evidence-based learning materials for the wider population such as family and friends, education professionals, and other members of society

Read the full article:

MERUK: Research shows that ME/CFS is a biological illness  –  so why do some people still think it is psychological in nature?

Why the Psychosomatic View on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Inconsistent with Current Evidence and Harmful to Patients by Manuel Thoma, Laura Froehlich, Daniel BR Hattesohl, Sonja Quante, Leonard A Jason and Carmen Scheibenbogen in Medicina Vol 60 no.1 2023

ME/CFS service development 

Health services for ME in Wales continue to be developed more slowly than everyone would like. A major reason for the hold-up is the length of time it takes to advertise and recruit new staff. WAMES continues to present Health Boards with patients’ views and Welsh Government staff are actively encouraging good practice.

This is what we know about the current state of development:

Aneurin Bevan UHB

ABUHB are working towards providing services for adults and children with ME and LC, including the severely affected and will be looking for residents’ views in a few months’ time.

Betsi Cadwaladr UHB

BCUHB’s plans are progressing for a Community Complex Conditions Service for adults, including the housebound, with the aim of engaging with residents around summer time. The revamped and reduced ME/CFS services in Llafairfechan near Conwy and Connah’s Quay will be absorbed into this.

Cardiff and Vale UHB

The development of a Long Term Conditions service in the Cardiff and Vale area is well under way, though the launch is taking longer than expected.  The information about ME/CFS on the Keeping me well website is much improved! Continue reading →

Are you good with figures?

WAMES is looking for a Treasurer

The Treasurer’s role is critical to the work of WAMES and will be a key member of the Finance & Fundraising Team.

It is an exciting time for the ME community in Wales as health services are being developed throughout the country, new awareness opportunities are appearing as face-to-face meetings are starting up again, and a new website is planned. WAMES is VERY busy!

The role of the treasurer is to:

• ensure that proper financial records and procedures are maintained so we know how much money we have received and how much we are spending
• give the management committee an understanding of WAMES’ financial affairs and advise on budgets, funding needs etc.

The management committee shares the responsibility for keeping WAMES solvent (and we are insured!) but we need one (or two) people to keep the accounts and records accurate and the charity legal.

Our AGM is planned for March 2024 and this would be a good time to meat the Team. No knowledge of ME is necessary so please ask friends, families and colleagues if they would like to join a friendly Team working hard to support and advocate for a growing number of ill and disabled Welsh residents.

Arrange an informal chat with our Volunteering Support Officer: sharon@wames.org.uk                          Download details

Please note:

• Training can be arranged & expenses will be paid
• Most tasks can be carried out from home
• Team meetings are virtual so internet access must be possible
• ‘Role share’ is possible
• You don’t have to be knowledgeable about ME
• The posts will give useful experience to add to your CV

#newWAMESwebsite – we have the money!

Almost a year after launching our fundraising challenge for a new website we have reached our goal!

Many people have helped along the way to reach a total of £650 and Rob’s #500MilesforME walking challenge fundraising has brought us over the finishing line. Thsnks to all who supported him in his mammoth effort.

Find out why we set a fundraising goal of £1,500:

#newWAMESwebsite fundraising challenge!

We can now finalise our plans for the new website, but it is not too late to let us know what YOU would like to see on the site.

What features would make the site easier to navigate for YOU?

Contact jan@wames.org.uk or use the website contact form.

Exploring the neurocognitive consequences of PEM in ME

Canadian researcher Dr Alain Moreau talks about his team’s research funded by OMF, into Post Exertional Malaise in ME/CFS:

“Our team developed a standardized test lasting 90 minutes to induce PEM in ME/CFS patients using a mechanical arm stimulation with an inflatable cuff. We included both people with ME/CFS and sedentary healthy individuals in our study. Both groups had blood drawn and underwent cognitive testing before and after the PEM test.

Inflatable arm cuff – Developed by researchers at UdeM and the CHU Sainte-Justine, the innovation allows testing of patients who cannot participate in clinical studies due to the severity of their condition. [UDEM Nouvelles 2020]

Our initial findings indicate that ME/CFS participants experienced cognitive impairment after the PEM test, although a significant variation in individual responses was observed. This prompted us to divide the participants into three subgroups based on their cognitive responses.

This stratification allowed us to notice how some cognitive domains seem more affected depending on the cluster, namely memory and attention…

These subgroups align with specific microRNAs (miRNAs), which are small molecules that regulate genes. Interestingly, these same miRNAs are linked to other neurological disorders, suggesting their potential role in cognitive function.

Our future research will involve looking for more miRNAs and other molecules related to various aspects of cognition (like attention, memory, and executive function) in the context of ME/CFS. These results will contribute to a better understanding of the disease, particularly its impact on brain fog and other types of cognitive impairment.”

Exploring the neurocognitive consequences of post-exertional malaise in myalgic encephalomyelitis, by Corinne Leveau, Iurie Caraus, Anita Franco, Alain Moreau in Journal of the Neurological Sciences Volume 455, Supplement, December 2023, 122590

Changes to physiological pathways similar in ME/CFS and Long COVID

A small study in New Zealand of the immune cell proteome in Long COVID, ME/CFS and healthy people uncovered “overlapping protein clusters and enriched molecular pathways particularly in immune functions”.

Senior researcher Prof Warren Tate says:

“It highlights within our community there are significant numbers of people debilitated now with disrupted immune systems, dysfunctional energy production, and disturbed brain regulation of their overall physiology that severely disrupts their family lives, ability to work and participate in their communities long-term, and that these people need support from all levels of society.

Therapeutic targeting of the immune response/inflammatory pathways could be effective.

This also means that the conditions can benefit from a coordinated treatment strategy, said the researchers.

“Immunotherapy for treating specific features of a disturbed immune system for many diseases is in a revolutionary phase of development and should have potential for application to ME/CFS and Long Covid patients now the specific changes in their dysfunctional immune systems are being carefully documented,”

A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome, by Katie Peppercorn,
Christina D Edgar, Torsten Kleffmann & Warren P Tate in Scientific Reports volume 13, no: 22068 (2023)

Research abstract

Of those infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ~ 10% develop the chronic post-viral debilitating condition, long COVID (LC).

Although LC is a heterogeneous condition, about half of cases have typical post-viral fatigue with onset and symptoms that are very similar to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A key question is whether these conditions are closely related.

ME/CFS is a post-stressor fatigue condition that arises from multiple triggers. To investigate the pathophysiology of LC, a pilot study of patients (n = 6) and healthy controls (n = 5) has used quantitative proteomics to discover changes in peripheral blood mononuclear cell (PBMC) proteins.

A principal component analysis separated all long COVID patients from healthy controls. Analysis of 3131 proteins identified 162 proteins differentially regulated, of which 37 were related to immune functions, and 21 to mitochondrial functions. Markov cluster analysis identified clusters involved in immune system processes, and two aspects of gene expression-spliceosome and transcription. These results were compared with an earlier dataset of 346 differentially regulated proteins in PBMC’s from ME/CFS patients (n = 9) analysed by the same methodology.

There were overlapping protein clusters and enriched molecular pathways particularly in immune functions, suggesting the two conditions have similar immune pathophysiology as a prominent feature, and mitochondrial functions involved in energy production were affected in both conditions.

In the media

Medical Life Sciences: Long COVID and ME/CFS patients could benefit from a coordinated treatment strategy

Newshub: Dunedin researchers reveal strong link between long COVID and chronic fatigue syndrome

NZ Herald: Long Covid, chronic fatigue links may help with remedies – researcher

University of Otago news: Strong links found between Long COVID and ME/CFS: Study

Medical express: Strong links found between long COVID and myalgic encephalomyelitis/chronic fatigue syndrome

Compelled loneliness and necessitated social isolation:

“It’s like being on the other side of a mirror, just looking in”

Natalie Wotherspoon interviewed 42 people with ME and found that loneliness can be an integral part of living with ME. She found 2 contriubutions to that:

• Necessitated social isolation concerns how ME symptoms can make social lives increasingly restricted.
• Compelled loneliness highlights how the combined experiences of both stigma and contested illness can lead to social withdrawal and rejection, which create a sense of loneliness.

The article argues that loneliness and social isolation can be conceptually distinct yet recursive and overlapping. With the worsening of ME, the participants experienced a cycle of loneliness, in which social isolation and loneliness reproduced each other.

Three key themes draw attention to how loneliness is affected by the situational aspects of living with a chronic and contested illness:

1. spatial and temporal restrictedness
2. communicative alienation and
3. discreditation.

The article highlights how health challenges can impact on loneliness and how the stigma of contested illness exacerbates loneliness, and… how it can be difficult to break a loneliness cycle when people have prolonged health challenges that can prevent them from acting upon loneliness.

CONCLUSION
This study contributes to understanding how loneliness and social isolation are experienced by people who have been diagnosed with ME, and potentially other contested conditions.

The stigmatisation of ME and loneliness can result in the needs of people with ME being overlooked and marginalised. Interventions that aim to support ME patients experiencing loneliness need to consider incorporating individual’s social needs and their health challenges.

Promoting meaningful and empathetic relationships should be prioritised over increasing social connections.

Read the article

MERUK: Loneliness and social isolation in ME/CFS

Although not discussed in detail in the research paper, ME Research UK notes that interventions which aim to reduce loneliness – not specific to those with ME/CFS – are often targeted at older adults, or involve an element of physical activity. While web- and phone-based interventions have been developed, and are in theory more accessible, these still require energy, and may lead to post-exertional malaise. In addition, the stigma and misunderstanding faced by those with ME/CFS may act as a barrier to participation in interventions that are not specific to the disease.

Knowing more about how the experiences of people with ME/CFS relate to loneliness may help researchers identify areas for intervention, which are both more accessible and place less responsibility on the person with the disease to make changes.

Christmas greetings from all at WAMES

WAMES is run by volunteers, many of whom have ME or care for us. We will be taking some time off over the festive period so we can start the new year refreshed (hopefully!).

WAMES helpline hours
helpline@wames.org.uk
0290 2051 5061
Closed: 23 December – 1 January
Reopen: 2nd January
Feel free to email queries and we will reply as soon as possible.

Alternative sources of help

The Samaritans can be contacted for emotional support 24 hours a day, 7 days a week.

English – 116 123 – free number (24 hours a day, 7 days a week)
Cymraeg – 0808 164 0123 – free number (7pm-11pm – check times on the website)

Meic Cymru – Children and young people up to age 25 can also contact Meic by phone, email, SMS text and instant messaging.

8am to midnight, 7 days a week
FREEPHONE: 0808 802 3456
SMS TEXT: 84001
IM/Webchat: www.meic.cymru.org

CALM – Campaign against living miserably – 365 days a year

Helpline 5am to midnight
Freephone: 0800585858
Webchat: www.thecalmzone.net/