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

[Jonathan Edwards]

Thanks - but how do we know that? I don't remember it from the paper.

I think there is a complicated fudge calculation that takes into account the relative risk for the regions that look reliable results. I think it is probably given in the paper but the calculation will not have been described in detail. It may be an underestimate but it seems to fit with most previous evidence I think. One twin study gave a figure of over 50% but that doesn't look very plausible now.

 

[MinIreland]

I just looked at the FB thread and Wendy B claims that "ME is always caused by an enterovirus".

Here is a link to the Enterovirus foundation

Where is the evidence for that claim? I've never heard about it (not that that means anything). I noticed that this lady (Wendy B) is an artist and doesn't have any medical background. HELLLLP.

 

[duncan]

Where is the evidence for that claim? I've never heard about it (not that that means anything). I noticed that this lady (Wendy B) is an artist and doesn't have any medical background. HELLLLP.

I suspect Chia. That's likely the originating theory. Doesn't mean he was right, but he did publish some studies I think that supported his stance. A lot of people think he was right in at least a subset.

That's true for everyone who likes to think themselves a ME/CFS pundit, ie, they and their supporters believe their respective theory has enough proof to support their claim. Same is true for Peterson and Hanson and the NY guy who ended up positing all ME/CFS was Lyme (can't think of his name at the moment).

 

[Midnattsol]

Today a cancer researcher is interviewed by a medical newspaper in Norway, and talk amongst other things about ME.

Things that are mentioned are (not necessarily as causes of ME, but general discussion about increases in certain diagnoses in society): "chronic inflammation", "leaky blood-brain barrier", "T-cells", "autoimmunity", "gut microbiome", "old friends hypothesis" (not by that name), "holistic health", and also "psychologization".

How should a layperson know what is a fad and what is true when it is in a reputable newspaper, aimed at medics, and by a researcher at one of our largest universities?

I must thank said researcher for asking immunologist and neurologists to be more interested and not leave everything to psychologists and physiotherapists though.

In Norwegian: Cancer researcher: Women's disease places immunologists in the field of psychologists (my translation of the title) https://www.dagensmedisin.no/endome...munologene-over-pa-psykologenes-domene/716031

 

[Jonathan Edwards]

Where is the evidence for that claim?

That was the old 1955 myth. Polio is an enterovirus. Acheson, or one of those, proposed that "ME" was an unknown polio-like enterovirus. John Chia picked up on this much later but it is a bit like going back to believing that malaria is due to bad air (mal aria). This is the level of of idiocy of popular beliefs.

 

[Jonathan Edwards]

How should a layperson know what is a fad and what is true when it is in a reputable newspaper, aimed at medics, and by a researcher at one of our largest universities?

A sensible lay person should have worked out by the time they are 18 that people talk nonsense all the time, especially experts, and that nothing should be taken as authoritative. And that being the case they have no business to be passing any of this stuff on as if they were themselves authoritative. OK, people want to believe stuff, and they are entitled to, but when it comes to persuading others to believe, that is a serious ethical issue, with no excuses for being wrong.

 

[duncan]

A sensible lay person should have worked out by the time they are 18 that people talk nonsense all the time, especially experts, and that nothing should be taken as authoritative

Except in medicine - or so most everybody in at least the US were taught.

OK, people want to believe stuff, and they are entitled to, but when it comes to persuading others to believe, that is a serious ethical issue, with no excuses for being wrong.

Isn't that what all of us, including you, have been doing - to one degree or another - on this forum?

 

[Jonathan Edwards]

Except in medicine - or so most everybody in at least the US were taught.

Yeah well, you said it.

Isn't that what all of us, including you, have been doing - to one degree or another - on this forum?

And we are very aware of the ethical issue and we spend hours arguing with each other to try and ensure that we are not putting out stuff that is misleading. When we put stuff out in fact sheets we try to stick to evidence and realities having spent thousands of hours considering all the reasons why it might be wrong. Moreover, we diligently go over all the evidence together with people with experience in relevant fields.

So yes, that is what we do, and we know our responsibilities.

 

[duncan]

Yeah well, you said it.

Ah. A US dig?

And we are very aware of the ethical issue and we spend hours arguing with each other to try and ensure that we are not putting out stuff that is misleading

Misleading according to whom?

When we put stuff out in fact sheets

Fact sheets aren't the bread and butter of forums, including this one. But they are a great add.

Moreover, we diligently go over all the evidence together with people with experience in relevant fields.

Cool, but how well have "people with experience in relevant fields" served this community in the past?

So yes, that is what we do,

Yeah, well, you said it.

 

[Colleen Steckel]

The group was afaik set up to continue the Nightingale Foundations and Dr Byron Hydes work.

https://www.s4me.info/threads/byron-hyde-md.41425/#post-634974

this is not just 'putting out misinformation' and is definitely not 'new'.

@Colleen Steckel might be able to explain more.

Sorry - just saw this. Not sure what more info people are looking for. My article explains the way back machine. I don't have a link to the new website, but the public Facebook group, Nighitngale Continuum is very active. https://www.facebook.com/share/g/1796BNYEMm/

 

[Colleen Steckel]

Returning to the beginning of this thread, and the previous one from which it was moved, an obvious question arises:

Since many voices on this forum are committed to the term "ME/CFS" and against the ME-ICC, why was/is the forum not named "Science for ME/CFS"?

In my opinion, this is a valid question. For those who may not know ME/CFS has multiple meanings. What it means to someone depends on where someone lives or their knowledge of our community's history.
ME/CFS = ME and CFS
ME/CFS = Canadian Consensus Criteria (a lot of studies with the ME/CFS label reflects the use of that criteria in the study.
ME/CFS = IOM report (NAM) - what is on the US CDC website. (Note - the IOM states ME and CFS are 2 conditions pulled together under the umbrella label of ME/CFS.)
ME/CFS = NICE guidelines.

ME label refers back to the original outbreaks and is the label the experts specifically applied to the International Consensus Criteria. They clearly stated anyone with the CFS or ME/CFS diagnosis needs to be further screened in order to know if the patient has ME.

I am well aware that many in this group are not comfortable with the ME is not ME/CFS conversation. I think as a "science forum" we should more accurately (for science clarity) use the criteria attached to a label in our conversations.

We now have quite a bit of science showing that these different patient groups need to be stratified so they can get accurate treatments.
Not just by criteria but also by gender and type of onset and length of illness, etc.

 

[Colleen Steckel]

I think the focus on theory is at the heart of it. Also the implication that the theory predicts harms we do not have evidence for. The PEM/PENE distinction reflects of the theoretical mindset of the ICC group. As has been said, it is fabricated and sounds uncomfortably like an exclusive club card.

On a wider basis it is all about claiming the existence of 'special diseases' that form a focus for advocacy that threatens to become a sort of religion.

So instead of the pragmatic category of ME/CFS we have the special disease of ICC defined 'ME' with all sorts of nasty brain damage and comorbidities. Instead of common or garden hypermobility we have 'hEDS'. Instead of allergy we have 'MCAS'. And so on.

ME was originally an acute epidemic illness that looked a bit like polio. Ramsay made the mistake of thinking the ME/CFS that some people had later was a chronic phase of this special disease. The CCC people realised that 'ME' was being used to describe the same people as 'CFS', as long as you tightened up Fukuda to avoid any old fatigue. The ICC, I suspect driven by US researchers with 'theories all their own', decided that ME should go back to being a special disease but now one that looked a bit like AIDS.

We now know that ME/CFS really is a special disease but nothing like either polio or AIDS. It is probably 'neuroimmune' but not for any reasons to do with the ICC speculations.

Up until this point in time it has been hard to see how to discourage mistaken ideas without anything to put in their place. But over the last 5 years I think we have learnt enough to know what should go there - ME/CFS. White and co tried to claim this was a bogus new diagnosis but I think he has been outvoted. People practicing now accept the ME/CFS label.

Many, and probably most, of the advocacy groups were built up from people who saw the special disease as 'ME'. Quite what they thought that was is unclear but in some cases it was heavily tainted with the original Acheson idea or the newer ICC idea. It is time to clear all that away and focus on the real disease and on evidence.

I am aware we are of different minds about what "ME/CFS" is and your opinion about the ICC. In my personal experience I fulfill the ICC and know people who don't and have an ME/CFS - IOM diagnosis. Having talked to many of these ME/CFS (and CFS- Fukuda patients), it is clear to me that I am having different experiences due to the neuro, immune and cardiac issues that are clearly spelled out in the IC Primer.

I think of it as people inside the bubble can see the difference between different groups under the ME/CFS umbrella, but those outside of the bubble are not seeing the differences. I think that is why it is so important that we stratify patients and do research that clearly clarifies which patients are being studied. This mixing up of cohorts has led to a lot of harm due to findings that apply only to those who don't fit the ICC.
That is why I track ICC and CCC research separately and don't track research that doesn't screen using those criteria. See those lists here: https://colleensteckelmeiccinfo.substack.com/p/myalgic-encephalomyelitis-research

In those research lists we are highlighting all the studies that are showing the importance of stratification. It is showing a strong pattern of understanding that those who fit the ICC are dealing with biological issues that others under the ME/CFS umbrella may not have. There is a lot of research happening that I haven't seen discussed on this forum.

 

[Colleen Steckel]

@MinIreland Since you’re in Ireland you may have come across a loosely organized group called MEAI — ME Advocates Ireland which I think is really one or two people. Most of what they put out is inaccurate, unhelpful and harping on about ICC ME. They are as far as I know the main advocates dealing with the HSE.

I disagree with this assessment of the MEAI. Their information is based on the ICC. The ICC and the IC Primer was created by experts in the field. My opinion is that their information is accurate for a subset of patients who fulfill this criteria. I think we can all have a place in this community without being labeled as "unhelpful".

 

[Colleen Steckel]

I just looked at the FB thread and Wendy B claims that "ME is always caused by an enterovirus".

Here is a link to the Enterovirus foundation

Where is the evidence for that claim? I've never heard about it (not that that means anything). I noticed that this lady (Wendy B) is an artist and doesn't have any medical background. HELLLLP.

Her information is based on Dr. Hyde's work. More researchers are coming around to this hypothesis. See Maureen Hanson's work. Also Dr. Chia's research. Again, this is likely a subset of patients and Dr. Hyde was clear about that.

 

[DigitalDrifter]

ME as we now know it, does not have any specific neurological features.

And the problem here is not the psychobabble. It is the neuroimmunobabble, which is just as bad. The psychobabble is largely a response to biobabble.

The desperation, gaslighting, systemic discrimination and severe disability drives the patients into the arms of incompetent and/or predatory HCPs.

But we have been doing this with careful wording for eight years now. And the people who produce the memes know all about us.

not understanding why spreading unfounded claims ultimately is harmful to the patients?

one thing I don’t get is why the doctors can see the biobabble, which in some cases can be difficult to assess and may be beyond many doctors level of knowledge, but not the psychobabble, which seems far more obvious.

The Goldacre Effect - The Goldacre Effect is a condition where other wise skeptical people hold psychological conceptualization for unexplained physical symptoms and behavioural treatments to a far lower standard of evidence than what would be accepted for physical conceptualization and physical treatments.

Most of them don't fully believe in the awesome power of the mind. They give out diagnosis like Somatoform Disorder or FND when they want to label the patient as malingering or a hypochondriac, I'm not saying this is the case for all doctors, but some definitely do it, it happened to me. They give you the "We're not saying the symptoms aren't real" line because it provides perfect plausible deniability in case you report them. I was certainly treated as if my symptoms were not real.

Will finish the rest of this post tomorrow.

 

[hotblack]

There is a lot of research happening that I haven't seen discussed on this forum.

Please, by all means share the papers so we can discuss them. From what I see just about every paper in the field is posted when published, but if we’re missing things we should fill in that gap.

 

[hotblack]

We now have quite a bit of science showing that these different patient groups need to be stratified so they can get accurate treatments.
Not just by criteria but also by gender a

Do we have evidence which ties this stratification to the subgroups you have outlined? There is work like PrecisionLife’s which talks of subgroups but AFAIK nobody has shown this fits those groups or definitions. That’s also just one study, it sounds as if they will be talking about replication soon but replication within ME/CFS diagnostic criteria.

We do have DecodeME which shows people with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population.

 

[Braganca]

I disagree with this assessment of the MEAI. Their information is based on the ICC. The ICC and the IC Primer was created by experts in the field. My opinion is that their information is accurate for a subset of patients who fulfill this criteria. I think we can all have a place in this community without being labeled as "unhelpful".

This thread is about the importance of advocacy being accurate and not misleading or sharing misinformation. The problems with ICC are well documented on this forum and mentioned in this thread. It is entirely unhelpful to say ICC is a subset of ME/CFS and to work with the Irish govt on that supposition.

 

[Jonathan Edwards]

In my opinion, this is a valid question.

Which has been answered. S4ME is now an anachronism but changing names is not simple.

For those who may not know ME/CFS has multiple meanings.

ME/CFS does not mean ME and CFS. It is clear that it refers to one category. Occasionally people misread it as and if they do not know what it means.

Otherwise it has a single meaning, which, like rheumatoid arthritis or dementia, has various slightly different definitions because there is never a perfect way to define an illness. The research community has no issue over these differences.

ME label refers back to the original outbreaks

But, Colleen, have you not read what has been discussed here at all? The original outbreaks were of acute epidemic viral illnesses that someone thought were due to an atypical enterovirus. There was never any good evidence for that and nobody is interested in it any more i the scientific community. ME/CFS is something quite different, along the lines of Ramsay's 'chronic ME' which turned out to follow lots of different infections.

They clearly stated anyone with the CFS or ME/CFS diagnosis needs to be further screened in order to know if the patient has ME.

And to be frank these 'experts' had no idea what they were talking about. They included a number of people whose research claims have been discredited. The ICC never actually said what this "ME" is supposed to be in pathological terms. The abnormal biology claimed at that time has not replicated.

We now have quite a bit of science showing that these different patient groups need to be stratified so they can get accurate treatments.

We don't. Please give citations if you want to introduce evidence. There are no ''accurate treatments'. Everyone in the research community knows that.

In my personal experience I fulfill the ICC and know people who don't and have an ME/CFS - IOM diagnosis.

Which is entirely circular.


I will have a look at your links but if there is research of this sort of any merit why does nobody know anything about it?

Edit: All I can see so far are the great long lists of unconvincing unreplicated findings that we have been trawling through day by day for ten years now. In science you do not just believe all this stuff is solid fact. You accept that most of it will turn out to be irrelevant or wrong. I don't see anything that shows the need to stratify yet.

 

[Jonathan Edwards]

Why put this stuff out on the internet when the research community doesn't think it means anything?