How do we stop charities and influencers spreading bio-babble about ME/CFS?'

[Medfeb]

OK, the CDC updated so I guess 1994 criteria are out of date.

The Fukuda criteria are still being used by some researchers and officially, CDC and NIH continue to support the use of them and any other criteria. They have refused to require PEM for a diagnosis of ME/CFS. I resigned from NIH's CDE initiative in 2023 after years of trying to change this.

And when some researchers move on from Fukuda to IOM, they still use it in a way that does not explicitly require PEM. For instance, this 2025 paper by Mancini et al stated they required at least a substantial burden "of some of the following symptoms in the month prior to the study: unrefreshing sleep, post-exertional malaise, problems with attention/concentration, or orthostatic sensitivity."

"Some" means PEM may not be present in all participants. This was a 2 day CPET study so imagine how that could skew the results

I appreciate the concern with biobabble but personally think that studies of "ME/CFS" that don't require PEM and use whatever criteria a researcher decides are much more damaging to forward progress by producing irreconcilable evidence.

Edited to add my comments which I had inadvertently deleted

 

[Sly Saint]

I don't think Twisk has contributed significantly to research, beyond some opinion articles, and where his name is on research papers they are on 'ME/CFS'.

"some opinion articles" have made a big contribution debunking the bad research.
some 50 publications and 1,170 citations
https://www.researchgate.net/profile/Frank-Twisk
@FrankTwisk

 

[Jonathan Edwards]

"some opinion articles" have made a big contribution debunking the bad research.

That is wandering off the point, surely. I put out a lot of debunking but I am not a researcher using a set of criteria for a data study.

Ad as far as I can see many of those fifty publications involve just the sort of hair-splitting obfuscation we want to get rid of - contrasting Ramsay ME with ICC MME, with CFS, and more while denying the existence of ME/CFS.

 

[Jonathan Edwards]

I appreciate the concern with biobabble but personally think that studies of "ME/CFS" that don't require PEM and use whatever criteria a researcher decides are much more damaging to forward progress by producing irreconcilable evidence.

Sure, nobody is suggesting abandoning the need for PEM - which came with the CCC ME/CFS (having been borrowed from CFS, not ME!).

Fukuda is no good, we agree. That some researchers are still using Fukuda is a problem but relatively few who are actually contributing to progress are doing that now. Fukuda studies are more a case of noises off, as far as I can see. And not really relevant to the problem of bio-babble from advocates?

 

[Sly Saint]

It is time for a new type of ME/CFS charity but in the UK my feeling is that that is more likely to be built out of reshaping Action for ME

Out of all the ME charities, the one that has ME/CFS in its name is Sussex and Kent ME/CFS society.
After their (and their medical advisers) opposition to the NICE guideline they and BACME are now making it their own.

What is ME & CFS? - Sussex & Kent ME/CFS Society

How do I know if I have ME/CFS? British Association for ME (BACME) Most people who experience prolonged fatigue after an infection will make a full recovery. However, some people will go on to experience significant fatigue for a long time and may also develop lots of additional symptoms...

measussex.org.uk

Action for ME once nearly added CFS to their name which met with much opposition; they don't appear to use ME/CFS.

What is ME?

Explore what ME is and understand its symptoms, how many people it effects, and the damaging impact it has on people's lives.

www.actionforme.org.uk

 

[Medfeb]

Sure, nobody is suggesting abandoning the need for PEM - which came with the CCC ME/CFS (having been borrowed from CFS, not ME!).

Fukuda is no good, we agree. That some researchers are still using Fukuda is a problem but relatively few who are actually contributing to progress are doing that now. Fukuda studies are more a case of noises off, as far as I can see. And not really relevant to the problem of bio-babble from advocates?

I appreciate views can vary on which studies are contributing to progress. But the 2025 Mancini CPET paper is now part of the ME/CFS evidence base that people are using. Jarred Younger has been using Fukuda as in this 2024 paper, and more recently this 2025 paper on possible racial disparities. There, they used symptoms to determine whether participants met Fukuda and/or IOM using a method developed by Jason to determine which of one or more criteria was met. But both are treated as valid ME/CFS criteria.

On the question of relevance - I appreciate advocates spreading non-evidenced beliefs such as that cited at the beginning of this thread can turn off potential allies and muddies the water. But I think that studies like the above pollute the evidence base with findings in (at least some) non-ME/CFS participants that are then labeled as ME/CFS.

The other question this raises of course is which biological claims are considered biobabble. Is there a wide range of opinion on that? My view may be narrower than others and thus my concern with the impact of, for instance, the example listed at the start of this would be less.

 

[Jonathan Edwards]

I appreciate views can vary on which studies are contributing to progress. But the 2025 Mancini CPET paper is now part of the ME/CFS evidence base that people are using. Jarred Younger has been using Fukuda as in this 2024 paper, and more recently this 2025 paper on possible racial disparities. There, they used symptoms to determine whether participants met Fukuda and/or IOM using a method developed by Jason to determine which of one or more criteria was met. But both are treated as valid ME/CFS criteria.

To be honest I had never heard of the Mancini study and I don't regard these as significant research progress. I agree that they have the potential to pollute the evidence base but I think most of us have already forgotten about them if we ever knew about them. Yes, Fukuda is unhelpful if used as criteria for ME/CFS (which it isn't) but the issue of what criteria researchers approved of was raised in relation to ICC, which as far as I know nobody much has used if anyone.

 

[Jonathan Edwards]

The other question this raises of course is which biological claims are considered biobabble. Is there a wide range of opinion on that? My view may be narrower than others and thus my concern with the impact of, for instance, the example listed at the start of this would be less.

I think it focused around the idea of 'neuro-immune exhaustion' which I think most people here would agree is just made up to sound clever. I haven't a clue what it is supposed to mean, yet people insist that it is special to their sort of 'ME'.

 

[Jonathan Edwards]

The word "exhaustion" aside, why is a theory that involves the brain and the immune system biobabble?

It isn't. But a theory is not a definition of a clinical category. More importantly there isn't actually a theory - at least I don't have any idea what this theory is. Do you? The criteria were dreamt up by a motley crew of people with all sorts of claims to having a theory but as far as I know none of them actually had one. Not like @jnmaciuch, who has a very specific theory and defends it tooth and nail. It is all just play-acting as far as I can see.

Your post seems to have disappeared.

 

[Dolphin]

Action for ME once nearly added CFS to their name which met with much opposition; they don't appear to use ME/CFS.

What is ME?

Explore what ME is and understand its symptoms, how many people it effects, and the damaging impact it has on people's lives.

www.actionforme.org.uk

My recollection is they nearly added “and chronic fatigue” (i.e. “ME and chronic fatigue”) rather than CFS.

 

[duncan]

It isn't. But a theory is not a definition of a clinical category. More importantly there isn't actually a theory - at least I don't have any idea what this theory is. Do you? The criteria were dreamt up by a motley crew of people with all sorts of claims to having a theory but as far as I know none of them actually had one. Not like @jnmaciuch, who has a very specific theory and defends it tooth and nail. It is all just play-acting as far as I can see.

Your post seems to have disappeared.

Sorry, it was poorly expressed as I'm struggling.

But a theory is not a definition of a clinical category.

So?

More importantly there isn't actually a theory - at least I don't have any idea what this theory is. Do you?

I think so. Maybe you should check the internet.

It is all just play-acting as far as I can see.

I can appreciate how a patient's perspective may seem abstract, but trust me when I say for any of us who have been embroiled in this debacle for more than a few years, we usually can recognize play-acting when we see it as it typically has come at our expense.

 

[Jonathan Edwards]

Maybe you should check the internet.

I checked the internet. So what was this theory you thought was?

 

[duncan]

I checked the internet. So what was this theory you thought was?

I'm in no mood for silliness, and I'm not inclined to play games.

If I recall correctly, some part of the brain's immune system has been engaged so long or so intensely that it no longer functions correctly. I cannot remember why this results in symptoms, but there are similar theories in other medical communities, i.e. the brain's immune components have somehow been compromised, symptoms result but there is little indication as to why from typical immune markers.

That's a layperson's poor translation, but I think it's a rough approximate.

To my fellow patients, if I mangled this too badly I apologize.

 

[Trish]

I think the point is that 'neuro-immune exhaustion' points to theories as yet unproven about the biology involved in PEM. That's fine on a discussion forum and in hypothesis articles and chat among scientists, but should have no place in a set of diagnostic criteria for a disease defined by a pattern of symptoms. Calling PEM PENE just leads to confusion.

 

[bicentennial]

Maybe lets start with precise language on the closest approach that seems to be a neurological and immune systems approach,

- as this forum found some sounder research indicating both of these 2 systems got involved

- but this forum did not on the whole go so far as to fall in with an international expert line-up calling it a neuro-immune disease

Please distinguish between recent scientific reference to neuro and immune indications (maybe genetic), and unsubstantiated diagnostic "neuro-immune" theory. Or was it substantiated?

 

[Jonathan Edwards]

Please distinguish between recent scientific reference to neuro and immune indications (maybe genetic), and unsubstantiated diagnostic "neuro-immune" theory. Or was it substantiated?

If there wasn't actually a scientific theory that made any predictions then it is not going to be substantiated or refuted.

As far as I know the only immune abnormality the committee had an interest in was a low NK cell count or function or both. But nobody ever explained why that would make you feel ill with PEM. If the NK cells were absent you might expect less rather than more symptoms. I don't know what neurological things were in mind but there had been some talk of low brain perfusion - but that doesn't seem to have anything to do with immunity. There was talk of inflammation but there have been no signs of that. So who knows?

Was this an 'expert line-up'? There are some names there that have been completely discredited. I think it was just a group of people who all wanted to push the idea of a special disease called ME.

One thing that occurred to me is that the idea of post-exertional immune exhaustion doesn't make sense anyway because it suggests that there is some form of exhaustion, other than just feeling exhausted, that comes on with exertion. But the claimed NK cell defect was supposed to be there all the time. And NK cells do't have much to do with brains. And if there was inflammation that wouldn't be exhaustion of cells it would be activation.

It all seems to be a complete muddle of thoughts that are impossible to join up in a meaningful way.

I don't think anyone would now claim to know the basis of ME/CFS, even if there are theories. The idea that you define a syndrome by some speculated theory that you have not even formulated is something that doesn't happen in serious medicine. The problem with ME/CFS is that it has had so little attention that it became the playground of fringe researchers who seem to have had no real idea what they were doing. Coming to ME/CFS from studying other chronic diseases I was gobsmacked by just how dreadful the academic standard was.

 

[Sly Saint]

My recollection is they nearly added “and chronic fatigue” (i.e. “ME and chronic fatigue”) rather than CFS.

You're correct, 1993

http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/history-of-action-for-me.pdf

 

[Sly Saint]

push the idea of a special disease called ME

That was similar to what Wessely said about patients who said they had ME.

"I will argue that ME is simply a belief, the belief that one has an illness called ME"

— Simon Wessely 1994

The answer is almost certainly that ME/CFS is not a neuroinflammatory disease

so are you in the psychoneuroimmunology camp? (see Carmine Pariante, Gabrielle Murphy)

I suggested some time ago that S4ME should put together a document of what ME/CFS isn't, citing evidence, for mostly bps theories eg deconditioning (although I still wish we had another name to use even just as a working title.)

Maybe this should be extended to all definitions and theories so that we can all see the evidence for and against including the latest BACME offering.

 

[Kitty]

I suggested some time ago that S4ME should put together a document of what ME/CFS isn't

But we can't say what it isn't. All we can do is point to the lack of evidence for it being this, that or the other.

We can't rule out deconditioning being involved; it would be surprising if it wasn't, to be honest, like all diseases that limit people's activity and mobility. There's no evidence at all of it being causative, or that it has a significant role in perpetuating symptoms, but that's as far as we can go.

 

[ScoutB]

But we can't say what it isn't. All we can do is point to the lack of evidence for it being this, that or the other.

Relatedly, I really like @Hutan’s thread on cortisol that just really clearly lays out all the (negative) evidence. Do we have other threads like that? Or ideas of other topics/theories that would be useful to analyze in a stand alone thread?