2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

Hutan

Hutan

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Links to the UK UK MEA material - What you need to know about ME/CFS
Booklet
Video - Youtube (The MEA appears too have now made this a private video)
 
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https://meassociation.org.uk/2025/05/new-updated-booklet-what-you-need-to-know-about-me-cfs/#:~:text=underlying disease process.-,ME/CFS is a complex, chronic medical condition affecting multiple,kind of effort or activity.

New updated booklet: What you need to know about ME/CFS
May 15, 2025

The ME Association has published an updated and comprehensive booklet on everything you need to know about ME/CFS. Written by Dr Katrina Pears, Research Coordinator for The ME Association, it covers many important areas and provides expert information for people with ME/CFS.

Introduction
This booklet provides a summary of what you need to know about ME/CFS and is based on the evidence-based NICE Guideline, expert medical opinion, and the result of medical research.

It considers key symptoms, diagnosis, multidisciplinary care, what might cause the disease, predisposing, precipitating and perpetuating factors, and explains what the research has been telling us about the underlying disease process.
  • ME/CFS is a complex, chronic medical condition affecting multiple body systems and its pathophysiology is still being investigated.
  • It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity.
  • It affects everyone differently and its impact varies widely – for some people symptoms still allow them to carry out some activities, whereas for others they cause substantial incapacity.
  • It is a fluctuating condition in which a person’s symptoms can change unpredictably in nature and severity over a day, week or longer.
  • It can affect different aspects of the lives of both people with ME/CFS and their families and carers, including activities of daily living, family life, social life, emotional wellbeing, work and education.
  • People with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by others (including family, friends, health and social care professionals, and teachers) who do not understand their illness.
  • Because it can look like many other illnesses, people often face uncertainty and delays in diagnosis.
  • Symptoms include flu-like malaise, sleep difficulties, brain fog and a debilitating fatigue that is unlike normal tiredness.
  • People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli.
  • Symptoms often fluctuate in both nature and severity, causing distress and disrupting people’s lives.
  • There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed.
pdf direct link

https://meassociation.org.uk/wp-content/uploads/2025/05/MECFS-What-you-need-to-know-April-2025.pdf
 
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Hmm. I won't be recommending that resource to my GP practice.
I have only skimmed briefly through it.

A few problems I see with it.

The list of key bullet points at the start does not mention PEM. It waffles around the effects of activity without making PEM clear as a distinguishing feature:
eg:
  • Symptoms include flu-like malaise, sleep difficulties, brain fog and a debilitating fatigue that is unlike normal tiredness.
I assume that's meant to be a plain English version of NICE's 4 diagnostic features, but why substitute 'flu-like malaise' for PEM. They are not the same thing.

Also from the initial key points list:

  • There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed.
Seems to suggest anything your local clinic does will be fine - that old nonsense about specialist advice. And no indication that the harm comes from pushing the envelope. And what is a 'carefully tailored plan'?

There are long chunks just copied from the NICE guidelines.

The section on research is fairly pointless since nothing has been reliably replicated, apart from the higher rate in females and some good indications of genetic predisposition and various precipitating factors such as infections.
 
Kitty said:
I wonder what therapies these are?
Click to expand...
They endless said, in relation to the critiques of PACE, that 'one size doesn't fit all', implying that the therapies in PACE would help some people but not others. They just couldn't seem to get their heads around what a null effect really means. They seemed to think it made some worse, made no difference to others, and helped some, for an average null effect.
 
Sasha said:
They endless said, in relation to the critiques of PACE, that 'one size doesn't fit all', implying that the therapies in PACE would help some people but not others. They just couldn't seem to get their heads around what a null effect really means. They seemed to think it made some worse, made no difference to others, and helped some, for an average null effect.
Click to expand...
There are a category of approx 20 people who apparently have been helped by GET or Brain Training or LP or that Chiropractor thing, they never STFU about it, you should have no trouble working out who they are or what treatment they are promoting.
 
Merged thread

"Dr Katrina Pears, Research Coordinator for The ME Association discusses ME/CFS focusing on highlighting the important key clinical and pathological findings about the disease.
The video covers research into ME/CFS to date and particular studies which give key evidence supporting the physiological changes due to the underlying disease process."

From the MEA page:


There's some okay stuff, but a lot of credibility destroying problems.
See 'Three stage illness' - immune cells that can be activated are called "microbia" - I think they mean "microglia".
Elsewhere, there is reference to 'micro-ganglia activation, immune cells in the brain'

I think 'Co-advolescence' is convalescence.
Katrina says that low cortisol explains fatigue...

Listening to it more, I think the MEA need to take this off their website and redo it urgently.
 
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Hutan said:
There's some okay stuff,
Click to expand...

Really?

This is embarrassingly amateur. It sounds like one student reading another student's essay without understanding some of the words.

I am seriously disappointed. Charles has in the past most of the time presented a reasonably credible view, although I may have been generous because I think he has managed research support well. I wonder who has written this? It just is not scientifically literate. Moreover, the lack of expertise does not make it any more accessible or helpful. It is full of jargon that patients will not understand and it will cause just the sort of unhelpful beliefs it claims that people with ME/CFS do not have.

A sad disaster to my mind. I cannot wait for the time when all this garbage is finally thrown in the bin. That time is coming but goodness it seems slow.

The distinction between physical, BPS and psychiatric theories shows just how little the writer understands of what this is all about. Note that although it says MEA goes for the physical theory it does not criticise the BPS approach but criticises a psychiatric classification. But it is the BPS approach that is garbage. Psychiatric illness is just as real as any other physical illness. Why, why, why do we still get this total confusion?

Edit: considering the points in the last paragraph I find it hard to believe that his is Charles's text. I cannot believe Charles would let the BPS off the hook.
 
Katrina is the Research Correspondent for the MEA. She has ME/CFS herself and clearly means well. I think she is likely to find people pointing out the problems on this video upsetting, and I'm sorry for that. I think the fact that this video got published and promoted as information for health professionals says a lot more about the governance of the MEA than about Katrina.

I find it hard to believe that Charles Shepherd signed off on the video. Either option - him approving it or not being in the group of people reviewing it - is really concerning. I think this video suggests that the UK MEA has serious problems. It does not look as though it has the capability to function in a way that a credible major patient charity should.
 
Hutan said:
Katrina is the Research Correspondent for the MEA. She has ME/CFS herself and clearly means well.
Click to expand...

I too would be sorry if Katrina is upset by comments.

BUT, meaning well isn't enough in medicine. I took an oath to first do no harm. And anyone who puts out medical information is as much morally obliged to follow that principle as a qualified doctor. It is about time people woke up to the fact that ethics doesn't give a free pass to Research Correspondents.
 
I had initially thought that I might list some of the issues with the video, but there are too many. Fixing it is not just a matter of tweaking some of the words in places. It's completely unfit for purpose and will be causing harm.

If Katrina is going to continue in advocacy and especially in any role where she might have influence over what research is funded and promoted and how research results are communicated, I hope she will come here, to test the ideas she holds. With her PhD in Science, she clearly has the capacity to learn what she needs to learn to make a useful contribution.
 
Perhaps if anyone wishes to push back, they could ask for the source/references for the statements made within the film?

If she has a PhD surely she has reference material? And if she doesn’t, that should give her a gentle hint, rather than a line-by-line criticism?
 
There will be more videos.

This from the MEA website:
VuMedi Video: What You Need to Know About ME/CFS
June 4, 2025
The ME Association's Video – What you need to know about ME/CFS – is now available on VuMedi, which describes the platform as “a video education platform for doctors. Over 450,000 doctors use VuMedi to improve patient care and grow their practice.”

In May 2025, the ME Association released the first in a series of videos created by Dr Katrina Pears, Research Coordinator for The ME Association.

Titled, ‘What You Need to Know About ME/CFS', the video covers a range of topics including research into ME/CFS to date and particular studies which give key evidence supporting the physiological changes due to the underlying disease process.
Click to expand...

The video has now been published on VuMedi, a video education platform for healthcare professionals:

Transcript pdf (which does not have the errors of pronunciation)

May 17, 2025
Dr Katrina Pears, Research Coordinator for The ME Association discusses ME/CFS focusing on highlighting the important key clinical and pathological findings about the disease.

The video covers research into ME/CFS to date and particular studies which give key evidence supporting the physiological changes due to the underlying disease process.

This is the first video in a series which will be followed by two others MECFS; 2. Long covid and ME/CFS are they the same condition and 3. Long Covid what do you need to know
Click to expand...
 
MrMagoo said:
Perhaps if anyone wishes to push back, they could ask for the source/references for the statements made within the film?

If she has a PhD surely she has reference material? And if she doesn’t, that should give her a gentle hint, rather than a line-by-line criticism?
Click to expand...
There is lots which is very clearly linked to research, likely even quoted from papers, so there may well be sources, but that doesn’t make them indisputable facts. There’s a lot of stuff which we know is very speculative and hasn’t been reproduced.
It’s great for an overview from a patient. I’m concerned that presented the way it is it may be counterproductive though.
 
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