World ME Alliance Resource: Supporting People with Severe and Very Severe ME/CFS - a Resource Guide for Clinicians

Dolphin

Dolphin

Senior Member (Voting Rights)
https://worldmealliance.org/2025/08/new-clinician-resource-guide-published-for-severe-me-day-2025/

New Clinician Resource Guide Published for Severe ME Day 2025


Ahead of this Severe ME Day — August 8th — the World ME Alliance is
proud to launch a vital new publication:

Supporting People with Severe and Very Severe ME/CFS:
A Resource Guide for Clinicians

All over the world, Severe ME patients struggle to get the medical
care they need. Too often they are recommended inappropriate
psychiatric hospitalisation and dangerous treatments such as Graded
Exercise Therapy, while at the same time being denied vital
interventions such as intravenous hydration or tube feeding.

This resource from the World ME Alliance, available in both English
and French, is intended for use in crisis situations — particularly
when hospitalisation is being considered — and can be handed to
clinicians and healthcare providers by patients or carers. It is
designed to support self-advocacy when people with Severe ME may be
too unwell to speak for themselves, and to guide healthcare
professionals toward safer, more appropriate care.

Through this concise and practical document our goal is to help give
voice and agency back to those who are often left unseen and
underserved by healthcare systems.
 
I was lucky to be able to provide comments on this when it was in draft.

It definitely overstates biomed evidence but apart from that pretty happy with it. Does a pretty good job of acknowledging severity, doesn’t recommend unproven treatments. Beats many guides just with that imo.
 
The guide is 2 pages with bullet point lists and warning against psych and exercise treatments. It also lists good resources for more information.
Apart from stating unequivocally that ME/CFS is a neurological disease, I think it's very good.
 
Agree, I’d skip some of the bits in the ‘What is ME/CFS’ intro, they seem to be trying too hard to make the ‘this is a serious disease’ point without adding much. And phrases like ‘marginalised racial or gender identities’ also don’t add anything and will turn some people off.

But apart from that I like that it’s got a pretty clear and concise message and links to some good resources.
 
I agree with the content analysis.

My concern is that anything with 'ME' at the top produced by an advocacy group may simply confirm staff suspicions that the patient has unreal and unhelpful beliefs about their illness and erect a wall of mistrust from the outset.

A document like this needs to come from a genuinely authoritative medical source, like Harrison's Principles of Internal Medicine, to avoid that.

I think Nightsong established that Harrison's chapter is pretty good.
 
Jonathan Edwards said:
My concern is that anything with 'ME' at the top produced by an advocacy group may simply confirm staff suspicions that the patient has unreal and unhelpful beliefs about their illness and erect a wall of mistrust from the outset.
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All our main UK charities have 'ME' in their name, not 'ME/CFS', so this comment applies to everything they put out (and that we put out, come to think of it - we're 'Science for ME', not 'Science for ME/CFS'). Do you think they/we should change names to 'ME/CFS' for this reason or would it be better to wait for the science to develop a bit in case a new name comes along?
 
Jonathan Edwards said:
A document like this needs to come from a genuinely authoritative medical source, like Harrison's Principles of Internal Medicine, to avoid that.
Click to expand...
Which raises the question of if there’s anything else we can do to encourage, enable or support that?

We can talk about it, we can produce factsheets, you can do the work you’re doing, but will that really have an impact on an authoritative medical textbook?

If there are no really good examples of clinicians/clinical practice to hold up as examples or who could produce such content from inside the tent, then what? Is it just a case of “do the science and they will come”? That feels a bit… unsatisfactory. But I’m not sure what else there is.
 
Sasha said:
All our main UK charities have 'ME' in their name, not 'ME/CFS', so this comment applies to everything they put out
Click to expand...

Yup, that is the current problem.

But the solution may be that, when it is recognised in all the textbooks that ME/CFS describes a cohort of people with a real biological problem (or several), ME may become a harmless abbreviation for the same. Royal Free Disease may finally be consigned to history.
 
hotblack said:
Which raises the question of if there’s anything else we can do to encourage, enable or support that?
Click to expand...

I think members, in whatevrer capacity they may have outside the forum, and that may be quite wide-ranging, should keep banging on about how essential it is that we focus on the evidenced facts and cut the pseudoscience. Advocacy groups should be told to stop going on about EDs, MCAS, POTS or whatever, or 'energy deficits' or mitochondrial failure or multisystem disease, at least until we have some solid data. I am expecting DecodeME to show no genetic link to any connective tissue disorder, although I have not seen any specific data on this. Nothing on tryptase or IgE.

There may be no ME/CFS physicians to hold up as paradigms but there are intelligent, scientifically rigorous, clinicians in closely related fields who I think can be drawn in quite rapidly. There are the people interested in fibromyalgia genetics and the neurologists interested in auto-immune encephalitis and neuropathies. If groups like WMEA put out stuff that looks rigorous then getting an invite to do a book chapter for Harrison and Oxford and Cecil & Loeb and even Kumar & Clark would be so much more likely to happen.

I actually think that by the end of the year, or soon after, the science will be good enough for people to be able to write about ME/CFS involving immune and neurological disturbance with legitimacy and solid citations.
 
Jonathan Edwards said:
should keep banging on about how essential it is that we focus on the evidenced facts and cut the pseudoscience
Click to expand...
We can do that :)

Jonathan Edwards said:
There may be no ME/CFS physicians to hold up as paradigms but there are intelligent, scientifically rigorous, clinicians in closely related fields who I think can be drawn in quite rapidly.
Click to expand...

It would be nice if DecodeME shows something that interests people outside our world. Something that tickles the fancy of more smart intellectually curious people…
 
Jonathan Edwards said:
I think members, in whatevrer capacity they may have outside the forum, and that may be quite wide-ranging, should keep banging on about how essential it is that we focus on the evidenced facts and cut the pseudoscience. Advocacy groups should be told to stop going on about EDs, MCAS, POTS or whatever, or 'energy deficits' or mitochondrial failure or multisystem disease, at least until we have some solid data. I am expecting DecodeME to show no genetic link to any connective tissue disorder, although I have not seen any specific data on this. Nothing on tryptase or IgE.

There may be no ME/CFS physicians to hold up as paradigms but there are intelligent, scientifically rigorous, clinicians in closely related fields who I think can be drawn in quite rapidly. There are the people interested in fibromyalgia genetics and the neurologists interested in auto-immune encephalitis and neuropathies. If groups like WMEA put out stuff that looks rigorous then getting an invite to do a book chapter for Harrison and Oxford and Cecil & Loeb and even Kumar & Clark would be so much more likely to happen.

I actually think that by the end of the year, or soon after, the science will be good enough for people to be able to write about ME/CFS involving immune and neurological disturbance with legitimacy and solid citations.
Click to expand...
Any advice on how to do that would be much appreciated. I’ve not had any luck with my efforts yet.

Example: the Norwegian MEA just shared the newest video by Younger on Facebook and claimed that he has now proven that there’s inflammation in the brain and that this is the first test that has shown the disease mechanism in a test.

I think the issue might be a combination of a lack of scientific literacy and too much trust in the so-called experts, with some added bias towards anything biomed.
 
If a lot of the issue is our organisations backing this stuff - and other organisations not challenging it - then that's a big problem, because individual PwME are unlikely to take the word of another random PwME about this. If this is a major factor, then how do we get the organisations to act appropriately?

Do other diseases have the same lack of scientific knowledge in their organisations? Do those running arthritis, cancer and heart disease charities have equally little apparent scientific nous?
 
Sasha said:
If a lot of the issue is our organisations backing this stuff - and other organisations not challenging it - then that's a big problem, because individual PwME are unlikely to take the word of another random PwME about this. If this is a major factor, then how do we get the organisations to act appropriately?

Do other diseases have the same lack of scientific knowledge in their organisations? Do those running arthritis, cancer and heart disease charities have equally little apparent scientific nous?
Click to expand...
Could we use S4ME, as an “organisation”?
 
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