United Kingdom: ME Association news

[Jonathan Edwards]

In medicine, as in politics, weedkillers or any other context, means "extending throughout". The system is singular and the whole.

The use of "a system" is quite different, implying one of several. When several systems are affected the term is multi-system. Moreover in medicine multsystem is used, not for symptoms in lots systems but for pathology in multiple systems. It is even narrower than that because slthough dilated cardiomyoathy leads to pathology in liver, lung, kidney and elsewhere it would not be considered multisystem because the primary pathology is clearly in one place.

MECFS is the opposite of multisystem because we have not found pathology anywhere.

 

[MrMagoo]

Not to worry, the MEA have announced something about the Tyson project.

Research Update: MEA Clinical Assessment Toolkit (MEA‑CAT) – Stage II - The ME Association

Explore the MEA-CAT, a co-produced ME/CFS assessment toolkit with the ME Association. Learn more about stage II of the project.

meassociation.org.uk

Many of you will already be familiar with the ongoing work to develop the ME Association’s Clinical Assessment Toolkit (MEA-CAT). This toolkit brings together a set of validated questionnaires that capture the main health-related challenges faced by people with ME/CFS.

A defining feature of this project is that it has been led by — and co-produced with — people with ME/CFS. Thousands of individuals have contributed feedback, ensuring the toolkit reflects the issues that genuinely matter to the community. In short, it is designed by us, for us.

What is the toolkit used for?

The MEA-CAT was originally developed for clinicians working in specialist ME/CFS services, helping them assess and monitor patients more effectively. However, it is equally useful for individuals with ME/CFS who want to better describe their symptoms and difficulties.

People can generate summary reports for personal use or to share with family, employers, or health and social care professionals. The toolkit can also be used to track changes over time, support service evaluation, or contribute to research.

Current Availability

The toolkit is now accessible to anyone who wishes to use it:

• Autonom-e App: You can explore the toolkit and complete assessments for free. A small subscription (£2.99/month) is required to generate scores and summary reports.
• Free downloads: Hard-copy and electronic versions of the questionnaires can be downloaded at no cost.

Progress on Research Papers

The MEA-CAT team is now focused on publishing the research underpinning the toolkit.

• The first paper has recently been published: Development and Content Validity of the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) (Tyson, 2026, Health Expectations).

A Second paper summarising what participants said about their needs and what this means for specialist ME/CFS services is currently in progress
Additional papers are being prepared

 

[Trish]

Sigh. So uncritical of this disastrous project. The toolkit should be binned. It will be used to prop up BACME clinics that should all be closed down.

 

[MrMagoo]

Sigh. So uncritical of this disastrous project. The toolkit should be binned. It will be used to prop up BACME clinics that should all be closed down.

But they have peer reviewed papers and it’s by us, for us!

 

[rvallee]

The multi-system meme.

I have less of a problem with that one, because it's obviously in response to medicine's extreme silo approach where problems across specialties have no home, resulting in little competent work being done. No one has offered a better way of describing it. It's more accurate to describe the problem as not falling under any organ-specific specialty, but there's just no good language for that.

And given how long this has been an ongoing problem, it's very unlikely that someone will figure out the "just right" way of putting it that will assuage all the people rolling their eyes because they can't focus for more than two seconds about what it means, how it's a reaction to an existing problem, one that we can't fix ourselves.

But even then, it's all arbitrary. There are many diseases that cross specialties, they just don't have to justify themselves all the time. It's an issue that requires subtlety and is about ambiguous concepts, in a context in which subtlety is poison and almost no professional has the patience to sit through a whole sentence.

 

[Jonathan Edwards]

I have less of a problem with that one, because it's obviously in response to medicine's extreme silo approach where problems across specialties have no home,

I doubt it originates in that. I am pretty sure it originates in the hype from people like the ICC committee and MEA over-egging the biomedical evidence in the hope that will prove the psychiatrists wrong. If the evidence is lousy it just provides the psychiatrists with easy ammunition. ICC said you had to have immune, neurological, gastrointestinal or whatever pathology - without any reliable evidence for any of those. MEA kept going on about 9000 papers proving abnormalities in a dozen systems. It was all hot air because none of the data ever stood up.

Over my working life there has been a growing culture in biomedical science of saying that everyone with a theory may be right - that the disease may be complex, with immune dysregulation, neuroinflammation and so on. The reason is simple, the anonymity of peer review leaks and if you diss some other guy's theory they are sure to diss yours for ever on. They will gang up and (behind closed doors) belittle you as someone who is not playing the backscratching game properly. I know because I have been told by friends when I was the target and I have seen others targeted. This is mafia phenomenon designed to protect scientists' salaries, not your well-being.

ME/CFS research will go nowhere for years if this atmosphere holds sway. Science is,as De Bono said, about saying No, not the Yes of religion. It is about getting the right answer, not building up a research lab and jetting around on expenses.