#500miles4ME: taking awareness raising to a different level!

Rob summed up his motivation and fundraising activities for his #500miles4ME fundraising walk in a previous blog. He now reflects on what made him take the decision to do more to raise awareness of ME:

In one of my #500miles4ME daily posts on social media, I said something like,

“If you have a family member, friend or colleague who has ME, one of the best things you can do for them is to learn about the illness”.

I decided to push the boat out and approach some people we admired in the ‘ME world’ to see if they would record a discussion with me over Zoom whilst I was up at Paxton’s Tower around sunrise.  But would they be willing?

Who am I, after all? Well, I had to talk to myself and say,“Maybe you’re actually a kind of ‘expert’, too – just a different kind. You’re not a doctor and you haven’t got ME, but with 3 in the family sharing this diagnosis, you have nearly 30 years of experience of living close to it, 20 of those caring for one child, and 10 years for two children, at a severe level, and interacting with the health professionals on their behalf. Maybe you’ve got a right to speak up and be heard for that reason alone”.

I’ve spent most of my career in the world of additional (special) learning needs, and latterly, with those whose very complex needs require Health, Education and Social Services to work together to find solutions to difficult problems, so I’m also used to dealing with fellow professionals across a range of disciplines.

But mostly, I was emboldened by my son’s plight – 20 years ill, unable to access education, employment, relationships, unable now to read, get himself to the toilet, or step outside into the light. For his sake, why should I be afraid of anything, or anyone? Why not give it a go?

I wanted those close to us to have a better understanding of ME – I was thinking about friends and family and work colleagues, and wondering what I’d want them to know – and if I got that right, there would be others, including health professionals, who might look in, listen and learn. So, the discussions would need to be accessible and have ‘cred’ at different levels.

Preparation and practice!

From a practical point of view I realised there would be a lot of preparation for the video recordings. First I had to invest in some gear – a small tripod, a remote shutter, a Zoom account – and then learn how to use Zoom and how to record, which was fiddly using a small touch screen, but I found there was a good signal and acceptable quality video from the Tower.

I would need to draft an outline, discuss possible content and agree beforehand a series of questions with each of the interviewees. And watching the weather forecast a few days ahead and choosing a morning without rain or too much wind would be important, and on the day, finding a sheltered spot where I could get set up.

It quickly became clear that there was plenty to learn. I had to re-record 2 discussions because, well, I was a beginner at interviewing and they just weren’t good enough. This was asking a lot of my interviewees! And video-editing proved time consuming for the same reason.

5 Discussion at dawn interviews

In the end we published 5 video interviews: with a doctor, a physiotherapist and reps from the 3 charities I was raising funds for. I had lots of ideas for other discussions, but ran out of time and would consider doing more in the future.

I was delighted to get some good feedback from people afterwards – family, friends and others unknown who’d seen the videos – saying e.g. it had given them a much better understanding of the illness, they’d learnt more about the charities’ work etc, and, from people with ME, thanks for raising awareness .

A ‘good story’ for the media

My family is Welsh speaking, and I was approached by BBC Cymru Fyw (BBC Welsh language on-line), who’d heard about our experience of ME and the walks and wanted to do an article. We were told it made a ‘good story’ which would also probably be of interest to English language TV/radio and newspapers in Wales. We discussed how much publicity we thought we could handle as a family, and decided that we would limit it to just this one article.

Clearly, there’s a need for wider publicity and awareness about ME in Wales in general, and I guess this decision will have reduced the impact we might have made to some degree – but this was the right thing for us in our circumstances,  and ‘you can only do what you can do’.

In the event, we had some really good feedback. You can read the article in Welsh here, and an English translation here.

Next time in Blog 3 I’ll talk about my Discussion at Dawn with Dr Nina Muirhead

You can watch the Discussions at Dawn by going here.

Brain abnormality, not muscle fatigue, found in ME/CFS

An in-depth study of 17 people with virally triggered ME/CFS has uncovered an imbalance in brain activity triggered by abnormalities in the immune system. They also found distinct differences between men and women with the disease.

Brain scans showed that people with ME/CFS had lower activity in a brain region called the temporal-parietal junction (TPJ), which may cause fatigue by disrupting the way the brain decides how to exert effort.

They also analysed spinal fluid and found abnormally low levels of catecholamines and other molecules that help regulate the nervous system in people with ME/CFS.

Deep phenotyping of post-infectious myalgic encephalomyelitis/ chronic fatigue syndrome, by Avindra Nath et al in Nature Communications vol 15, no. 907 (2024)

Research abstract:

Post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS) is a disabling disorder, yet the clinical phenotype is poorly defined, the pathophysiology is unknown, and no disease-modifying treatments are available.

We used rigorous criteria to recruit PI-ME/CFS participants with matched controls to conduct deep phenotyping. Among the many physical and cognitive complaints, one defining feature of PI-ME/CFS was an alteration of effort preference, rather than physical or central fatigue, due to dysfunction of integrative brain regions potentially associated with central catechol pathway dysregulation, with consequences on autonomic functioning and physical conditioning.

Immune profiling suggested chronic antigenic stimulation with increase in naïve and decrease in switched memory B-cells. Alterations in gene expression profiles of peripheral blood mononuclear cells and metabolic pathways were consistent with cellular phenotypic studies and demonstrated differences according to sex.

Together these clinical abnormalities and biomarker differences provide unique insight into the underlying pathophysiology of PI-ME/CFS, which may guide future intervention.

See also:

MERUK: NIH ME/CFS Deep Phenotyping Study: Part 1. Overview

MERUK: NIH ME/CFS Deep Phenotyping Study: Part 2. Methods

Health rising: The Nath ME/CFS Intramural Study Pt. I: “It’s a Brain Disease…”

Health rising: The Nath Intramural ME/CFS Study Pt. II: Missed Opportunities, Misreadings and… Success (?)

Guardian: Scientists find link between brain imbalance and chronic fatigue syndrome

“The brain can respond to stimuli and impact on the body,” says Prof Karl Morten from Oxford University. “The brain is physically, biochemically not functioning properly and it’s the illness that’s doing that, not the patient.”

NIH: NIH study offers new clues into the causes of post-infectious ME/CFS

“We think that the immune activation is affecting the brain in various ways, causing biochemical changes and downstream effects like motor, autonomic, and cardiorespiratory dysfunction,” said Avindra Nath, senior author of the study.

JAMA: NIH Study Provides Long-Awaited Insight Into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“Overall, what we show is that ME/CFS is unambiguously biological, with multiple organ systems affected,” researcher Nath said. “It’s a systemic disease, and the people living with it deserve to have their experiences taken seriously.”

Nath also noted that even if people who display ME/CFS-like symptoms don’t have ME/CFS, they may have another condition for which medical attention would be beneficial, it just hasn’t been diagnosed yet.

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

Carmarthenshire ME Support Group

invites people to join them for a face-to-face meeting on Saturday 3 February at 2 pm in the Coleshill Social Centre, Coleshill Terrace, Llanelli SA15 3BT

More info: John James 01267 233793 [pm only]

Future meetings: Meetings will be held on the first Saturday of every 2nd month.

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 →