The disappearance of ME/CFS

[Jonathan Edwards]

Semantics, most of which are rooted in willful inertia.

Absolutely not semantics Duncan. Basic medical science.

There is no way that ME/CFS and Long Covid in their current meaning would be 'separate diseases'.
That would be to imply things the terms are not designed to mean. In fact if you twist them that way the combination is impossible because you would have to say LC patients cannot be ME/CFS because there is a known cause. But then anyone with ME/CFS who had an infection does not have ME/CFS. You end up going down the plughole.

 

[duncan]

There is no way that ME/CFS and Long Covid in their current meaning would be 'separate diseases'.

No way? Some inept meds apply sloppy qualifiers on a few diseases, refuse to throw enough reseach $'s to discover what's at play in each, and you claim there's no way these and others like PTLDS could be separate diseases?

This is in part why I think patients need to play a larger role in research.

 

[duncan]

That would be to imply things the terms are not designed to mean. In fact if you twist them that way the combination is impossible because you would have to say LC patients cannot be ME/CFS because there is a known cause. But then anyone with ME/CFS who had an infection does not have ME/CFS. You end up going down the plughole.

Well, yes and no. There's a bit of confused logic here, at least it seems to my poor thinking. First, medical syndrome terms ascribed by whom and to what end? I try not to lose sight of the mischaracterization that has haunted ME/CFS for decades.

Second, yes, we know the root cause of LC, but that doesn't mean it cannot be also ME/CFS because it could also involve whatever ME/CFS is. Still, it would appear they are distinct at least at some point.

Third, I have no idea why you say anyone who had an infection does not have ME/CFS. The truth is EVERYONE who has ME/CFS may have a current infection, no one who has ME/CFS may have any infection, there may be more that one variable including infections and immune issues involved, etc. We may not know yet what infectious disease(s), or autoimmune disease(s) or immune dysfunction(s) are involved with our disease, but I'll stick my neck out and claim the word "disease" despite affronting some sensibilities.

Basic medical science.

No, basic medical punting.

 

[bobbler]

Many of us have been predicting that, with the hard won gains for people with ME/CFS such as the NICE ME/CFS guideline, there would be a push from BPS proponents to diagnose people who meet ME/CFS criteria with other disease names. Those disease names might be MUS or FND or other variations of 'hysteria', or they might be the umbrella diagnosis of Long Covid.

Avoiding the ME/CFS diagnosis leaves therapists and clinicians able to follow whatever treatment approaches and offer whatever theories about disease etiology that suit their prejudices.

This indeed seems to be happening. I thought it could be useful to have a thread to document the evidence.

@Tal_lula might be able to confirm whether she is happy with this summary but the original post from here (which included the letter) detailed her fuller experience, which notes reasonable indications that the individual she saw was potentially using terms more consistent with 'FND' these days to describe mobility-based symptoms.

Despite demonstrating not understanding the terms/words he was saying eg neuroplasticity

The thing is, physios at least can diagnose some MSK conditions (or at least that seems to be largely accepted in the NHS), so I think it becomes a bit of a grey area.

I have the same issue with 'pain clinics'. I've had GPs say (e.g. when I had a suspected slipped disc & 'sciatica' over Christmas) that, if different medication or investigations were needed, they'd be able to do that at the Pain Clinic but, as far as I'm aware, these clinics are physiotherapy-led (possibly with input from psychotherapists/'talking therapy'). The one at NBT (same department as the ME Service) explicitly doesn't accept referrals for patients whose pain is explained by a diagnosed condition (i.e. they only treat 'chronic primary pain'). However, I think they do provide some joint injections, so I'm not sure how that works. I've noticed that my GPs have a lot of misconceptions about all of these services.

In/for other areas the physio that I saw privately had contacts who were physicians they'd run things by if it flagged. And wouldn't diagnose but would be wary of making sure they were a backstop if it seemed there was something else that might need looking at ie weren't just ploughing on regardless. But of course it is very different to the NHS hierarchy where someone might have been commissioned and that would be answering back or causing problems - I don't know, is it?

None of this of course starts going into the FND type territory, and from what you've described of this person's understanding of that it really is working like a propaganda of this ideology on paper and who to look out for rather than those who might be likely to get it and spot actual symptoms (like if someone had a back injury that wasn't responding right and might indicate a scan is needed to check for 'other things'). Which underlines why these people shouldn't have this power. Certainly for these things. Even if there might be some who know what they are doing, those who don't aren't self-aware and learn the lingo pretty quickly.

It also sounds like it is operating like that classic switch-and-bait CFS was set up as where it claimed/pretended it was a diagnosis of exclusion (so having it was a last resort after exhaustive testing) but was a first-stop-shop dumping ground to avoid investigating lots of people who reported often with real pathology. And that diagnosis was effectively used to rewrite history and wipe-out that pathology (even diagnoses, blood tests, biopsies, so not 'symptoms' as pathology) on medical record because it 'didn't chime' with the 'no known pathology'. I think there needs to be a term for this because I see it a bit with the FND (and other) stuff in the stories I read and of course they want to claim 'a positive rule-in' so then overshadow other stuff.

 

[Tal_lula]

@Tal_lula might be able to confirm whether she is happy with this summary but the original post from here (which included the letter) detailed her fuller experience, which notes reasonable indications that the individual she saw was potentially using terms more consistent with 'FND' these days to describe mobility-based symptoms.

Despite demonstrating not understanding the terms/words he was saying eg neuroplasticity


In/for other areas the physio that I saw privately had contacts who were physicians they'd run things by if it flagged. And wouldn't diagnose but would be wary of making sure they were a backstop if it seemed there was something else that might need looking at ie weren't just ploughing on regardless. But of course it is very different to the NHS hierarchy where someone might have been commissioned and that would be answering back or causing problems - I don't know, is it?

None of this of course starts going into the FND type territory, and from what you've described of this person's understanding of that it really is working like a propaganda of this ideology on paper and who to look out for rather than those who might be likely to get it and spot actual symptoms (like if someone had a back injury that wasn't responding right and might indicate a scan is needed to check for 'other things'). Which underlines why these people shouldn't have this power. Certainly for these things. Even if there might be some who know what they are doing, those who don't aren't self-aware and learn the lingo pretty quickly.

It also sounds like it is operating like that classic switch-and-bait CFS was set up as where it claimed/pretended it was a diagnosis of exclusion (so having it was a last resort after exhaustive testing) but was a first-stop-shop dumping ground to avoid investigating lots of people who reported often with real pathology. And that diagnosis was effectively used to rewrite history and wipe-out that pathology (even diagnoses, blood tests, biopsies, so not 'symptoms' as pathology) on medical record because it 'didn't chime' with the 'no known pathology'. I think there needs to be a term for this because I see it a bit with the FND (and other) stuff in the stories I read and of course they want to claim 'a positive rule-in' so then overshadow other stuff.

In as much as I can follow all this, it sounds about right to me.

I've seen many physiotherapists over the years for different things - including just this week, I had a home visit from a Community Physiotherapist (from the same organisation that runs the Long Covid Service) - and they've all thoroughly examined me in relation to whatever I'm seeing them about.

But when I describe exactly the same issues to Peter Gladwell or the physios at the Long Covid Service, they don't even touch you!

 

[Hutan]

Neurology conference in Ireland

Session III –
11.55 – 12.20 Functional Cognitive Disorder & Long COVID Dr. Laura McWhirter, Royal Infirmary of Edinburgh.

 

[Maat]

Neurology conference in Ireland

All but one of the authors are Bristol based, with one attached to Stirling and Edinburgh, (11 June 2021)

Differentiating Functional Cognitive Disorder from Early Neurodegeneration: A Clinic-Based Study - PMC (nih.gov)

Abstract
Functional cognitive disorder (FCD) is a relatively common cause of cognitive symptoms, characterised by inconsistency between symptoms and observed or self-reported cognitive functioning. We aimed to improve the clinical characterisation of FCD, in particular its differentiation from early neurodegeneration. Two patient cohorts were recruited from a UK-based tertiary cognitive clinic, diagnosed following clinical assessment, investigation and expert multidisciplinary team review: FCD, (n = 21), and neurodegenerative Mild Cognitive Impairment (nMCI, n = 17). We separately recruited a healthy control group (n = 25). All participants completed an assessment battery including: Hopkins Verbal Learning Test-Revised (HVLT-R), Trail Making Test Part B (TMT-B); Depression Anxiety and Stress Scale (DASS) and Minnesota Multiphasic Personality Inventory (MMPI-2RF). In comparison to healthy controls, the FCD and nMCI groups were equally impaired on trail making, immediate recall, and recognition tasks; had equally elevated mood symptoms; showed similar aberration on a range of personality measures; and had similar difficulties on inbuilt performance validity tests. However, participants with FCD performed significantly better than nMCI on HVLT-R delayed free recall and retention (regression coefficient −10.34, p = 0.01). Mood, personality and certain cognitive abilities were similarly altered across nMCI and FCD groups. However, those with FCD displayed spared delayed recall and retention, in comparison to impaired immediate recall and recognition. This pattern, which is distinct from that seen in prodromal neurodegeneration, is a marker of internal inconsistency. Differentiating FCD from nMCI is challenging, and the identification of positive neuropsychometric features of FCD is an important contribution to this emerging area of cognitive neurology.

"2.2. Questionnaires
Participants completed locally-devised questionnaires reporting on their household and employment circumstances, comorbidities and medication use. Comorbidities were listed, and then used to create binary categories indicating:

• vascular risk factors (hypertension, diabetes mellitus, hypercholesterolaemia, atrial fibrillation, coronary or cerebral or peripheral vascular disease), or use of medications unequivocally for these conditions;
• functional conditions excluding FCD (irritable bowel syndrome, non-epileptic attack disorder, chronic fatigue syndrome/myalgic encephalomyelitis, fibromyalgia);
• depression or anxiety, or use of medications unequivocally for this indication (e.g., including SSRIs but excluding amitriptyline and St John’s Wort);
• medications were listed and screened to identify those that can potentially impair cognition (this comprised patients on low levels of opiates, tramadol, pregabalin, gabapentin, lamotrigine, sleeping tablets, or amitriptyline)."

5. Conclusions
Overall, this study has highlighted similarities on measures of mood, personality and superficial cognitive testing, amongst those with mild cognitive impairments due to functional and neurodegenerative causes. However, detailed analysis of cognitive profiles demonstrated positive evidence of cognitive internal inconsistency in the FCD group. This supports efforts to refine the diagnosis of FCD, away from simply an exclusion of relevant differential diagnoses, towards the detection of positive clinical findings, including neuropsychometric evidence of internal inconsistency."

This adds to the picture of the appearance of deconstructing ME/CFS.

1. pain and fatigue = any old pain and fatigue
2. cognitive = FCD
3. all other symptoms = FND

Other examples:

Functional neurologic disorder/conversion disorder - Symptoms & causes - Mayo Clinic accessed today

Memory loss but not dementia: functional cognitive disorder (FCD) | Alzheimer's Society (alzheimers.org.uk) accessed today

Functional cognitive disorders: a systematic review - The Lancet Psychiatry Stone and Carson 2019 [paywalled]

These are the top results from a search of "functional cognitive disorder"

 

[Eleanor]

So, lots of evidence of a range of impairments, but because one of the patterns differs from what we see in another disease, we'll say it's a sign of 'inconsistency', that magic word that keeps it firmly under the FND blanket.

 

[rvallee]

So, lots of evidence of a range of impairments, but because one of the patterns differs from what we see in another disease, we'll say it's a sign of 'inconsistency', that magic word that keeps it firmly under the FND blanket.

I so firmly remember somewhere maybe in 2021, a French MD commenting on Long Covid confidently asserting that if the patient has a confirmed test, then it's LC, and if they don't, then it's psychosomatic. Everything else may be the same, the distinction is made purely based on the perception of the MD.

None of this is legitimate. And in a sense this is actually a protection: it's so obviously foolish that none dare say it out loud, that medicine can be so damn gullible and in the process ruin millions of lives. It's like when a movie is so bad that it becomes a cult classic for being so bad that people laugh at the movie itself.

 

[Sean]

This adds to the picture of the appearance of deconstructing ME/CFS.

1. pain and fatigue = any old pain and fatigue
2. cognitive = FCD
3. all other symptoms = FND

Yep.

Couldn't be more obvious that the psychosomatic branch of medicine are trying their hardest to disappear ME/CFS altogether.

They are incapable of actually admitting error and changing. So now their strategy consists entirely of continually forcing us to re-litigate that same old shit over and over, mainly by simply relabelling it and declaring it a brand new diagnosis and therapy that has nothing to do with the old diagnosis and therapy.

It is cruelty and cowardice because they can't handle the butt hurt of being exposed by the very patients they hold in utter contempt, and losing their gravy train.

 

[bobbler]

I so firmly remember somewhere maybe in 2021, a French MD commenting on Long Covid confidently asserting that if the patient has a confirmed test, then it's LC, and if they don't, then it's psychosomatic. Everything else may be the same, the distinction is made purely based on the perception of the MD.

None of this is legitimate. And in a sense this is actually a protection: it's so obviously foolish that none dare say it out loud, that medicine can be so damn gullible and in the process ruin millions of lives. It's like when a movie is so bad that it becomes a cult classic for being so bad that people laugh at the movie itself.

According to what they would claim is involved with psychosomatic (expectations) makes no logical sense.

those without a test will be those who anticipated when they got ill that there would be no need for a test because all will as per a cold be fine after a few days of sniffles

and those who either didn’t seek or were deprived access to care

the problem with those who invoke the terms psychosomatic or BPS is they believe neither of them. Even those ‘ideas’ are just cover-ups for not wanting to believe in action-consequences, that disabled people should just get over it/shut up about it, and people who think a bit of fist-shaking and fake umbrage can and should get people out of being responsible for damage .

It’s throwing doubt where there isn’t doubt. And often sadly it’s perpetuated just by people who think they are having a bad day and life’s busy for them. Who then get caught up in that habit when they learn not only can you get away with it but there are loads of people who really praise you for it. It’s one of those sliding doors moments of life things. But the world over for professions.

Employment laws that say you can’t bully or discriminate but if the person you do it to wants to avail of them the pricess will likely be further opportunity to destroy their health. It’s like those who ensure getting justice involves pulling at teeth so long that the pricess of getting your justice causes more harm than the initial injury - and that lesson gets well taught to eventually be supporters should blame those who insist on holding to account for causing trouble to everyone around. Rather than of course system needs to be improved because these tactics are being used to distort laws. Moral and legal and criminal ones. But also logic and science. Claiming sense becomes made too hard.

they do think if they reframe the world and ignore others suffering or need or justice then it will go away because they’ve learned if they are that belligerent bystanders don’t step in much and hold them accountable so being that way is the best way to have a lazy life.

I could understand if this guy was precise enough in his words to say that from a stats and research perspective then confirming initial infection or level of illness gives you known quantity in some. But that doesn’t mean eventually you can’t back-fill in those who got more ill to assume what must have happened IF it was relevant. ?

 

[bobbler]

Yep.

Couldn't be more obvious that the psychosomatic branch of medicine are trying their hardest to disappear ME/CFS altogether.

They are incapable of actually admitting error and changing. So now their strategy consists entirely of continually forcing us to re-litigate that same old shit over and over, mainly by simply relabelling it and declaring it a brand new diagnosis and therapy that has nothing to do with the old diagnosis and therapy.

It is cruelty and cowardice because they can't handle the butt hurt of being exposed by the very patients they hold in utter contempt, and losing their gravy train.

Well no it sounds like just as they destroyed psychology and mental health proper from moving forward to move it into transdiagnostics they can throw any old thing at to ‘calm and control the people’ so they are wanting to move into medicine not doing diagnostics

this is all about an allergy to science to specificity in order to find treatment that works for anything and to move towards lowest common denominator labels nothing could work for because it’s such a melting pot.

At that point the thick of mind but low of moral have the advantage

medicine becomes about manifestos of where to put the peoples whose brains don’t think right or behave properly rather than campaign and science for Alzheimer’s . It started with shady dumping of defined illnesses under departments of mental health so you’ve a hotch potch of the bits you can find a cure for (if it isn’t hotch -potched) and you can sell that dumping pot politically as whatever you fancy when you either want cash or want people to believe they are unworthy of rights, or a problem for others. Because you’ve removed the usual standard of measure. Is it Alzheimer’s causing them to be antsy or is this just people who don’t behave right now?

the blag is people who shake when they try to move or have twitches being the new grouping over having Tourette’s and Parkinson’s and rarer/undisgnosed/FMD proper experts.

these people are selling the alternative meaning of ‘we will take care of them for you’ to society. Under a guise if don’t ask don’t tell and making sure nothing can be measured or specific I suspect for liability reasons. The papers claiming it’s a good thing to have misdiagnosed those with CjD with FMD first show it’s probably about that.

but boy are they good salesmen in knowing how to pitch to their colleagues and which groups to say ‘ we will take these ones off your hands first’ to them about.

what makes me laugh is when the arses dare to invoke it being about hope when it’s about taking any hope away from someone who eg might find a B12injection brought back their cognitive ability but a label doomed them forever to being bullied as if it was a behavioural habit by being stuck under someone who isn't allowed to investigate or question a bad label (note different to 'diagnosis). It’s taking hope from diseases that need focused research by bucketing them.

 

[JellyBabyKid]

It’s taking hope from diseases that need focused research

This is utterly unforgivable and is the exact opposite of the hippocratic oath.

The mental gymnastics that they must have to go through to get to the point where they are ok with this, let alone perpetuating it and thinking they are doing any kind of good. And yet we have faulty thinking?

When "did I am sick and don't want to be" become faulty thinking? (I know, that Alwyn paper )

 

[bobbler]

Yep.

Couldn't be more obvious that the psychosomatic branch of medicine are trying their hardest to disappear ME/CFS altogether.

They are incapable of actually admitting error and changing. So now their strategy consists entirely of continually forcing us to re-litigate that same old shit over and over, mainly by simply relabelling it and declaring it a brand new diagnosis and therapy that has nothing to do with the old diagnosis and therapy.

It is cruelty and cowardice because they can't handle the butt hurt of being exposed by the very patients they hold in utter contempt, and losing their gravy train.

It is very sad because if you think for example about the common connection/source of ME/CFS being EBV/glandular fever. It feels one that medicine could easily have been properly working on over the last however many decades?

I think some people mention now that there are actually antivirals?

I even back decades ago it was commonly known that for some it is almost asymptomatic and are carriers but others get it so badly they end up with what is now termed ME/CFS with a lot of in-betweens of what is acute vs chronic and how bad that can be as a variation.

If these people instead want to separate out 'cognitive' and 'sleep' but without therefore doing it in such a way that they find connections between over-exertion and then not being able to sleep prior to days of hypersomnia, and cognitive symptoms in the mean time but c'mmon these people are so obviously ill and knackered at that point why is someone surprised. Well it is nonsense.

It is a way of making things chronic and of never having a chance to really fix things and give people actual health after an assault on their system.

There are some variations on certain things where there is sometimes an argument, but the actual delivery ends up being a switch and bait (like the idea of specialist centres for chronic infectious diseases,). To be doing this at the point of diagnosis - which is what these guys are selling - is pretty different to for example if a group of cognitive psychologists were taking people with a variety of diagnoses and looking into a phenomena within them in order to help.

I don't know whether really the new guidelines should have led to a tightening of diagnostic criteria for ME/CFS. And certainly what some of us now know about the differences between ME/CFS and FM (PEM, proper PEM) even though they can be co-morbid is so different to the assumptions they are the same thing just bucket based on the preference of the consultant or if one is more pain than tiredness.

There is quite a mess to sort out, but who/how do we trust the 'sorting hat'?

 

[Mij]

I think some people mention now that there are actually antivirals?

That's a whole other issue when doctors refuse to prescribe them with positive test results, even with severe symptoms. It will resolve on its own

 

[Eleanor]

Many of us have been predicting that, with the hard won gains for people with ME/CFS such as the NICE ME/CFS guideline, there would be a push from BPS proponents to diagnose people who meet ME/CFS criteria with other disease names. Those disease names might be MUS or FND or other variations of 'hysteria', or they might be the umbrella diagnosis of Long Covid.

Avoiding the ME/CFS diagnosis leaves therapists and clinicians able to follow whatever treatment approaches and offer whatever theories about disease etiology that suit their prejudices.

This indeed seems to be happening. I thought it could be useful to have a thread to document the evidence.

I was told last week by the Long Covid service in Gloucestershire that they expect their funding to end and the service to close in spring 2025. After that, people with general post-Covid illness will be seen by their usual local GP, but those with fatigue may also be referred to "Pete Gladwell's fatigue service" in Bristol (I don't know if this is the same thing as the Bristol ME service or to what degree they overlap.)

It suggests that at least in this area, the push to reclassify ME as MUS/FND will likely gather up Long Covid in its progress. It would be interesting to know if the same thing is happening in other parts of the country.

 

[Yann04]

Crosspost from the Esther Crawley thread:

I've asked on a parents' site if anyone has seen Crawley recently, linking to the acknowledgement in the BMJ paper.

Was shocked, but not terribly surprised that currently, several families are having their youngsters diagnosed as FND!!!

 

[Yann04]

I ran a twitter poll (not a very random sample I know) n=251 of people with chronic complex illnesses (mostly ME/CFS and Long Covid). And >80% reported having been misdiagnosed with a functional, psychosomatic, or psychiatric condition

https://twitter.com/user/status/1803123154249723964

 

[bobbler]

I was told last week by the Long Covid service in Gloucestershire that they expect their funding to end and the service to close in spring 2025. After that, people with general post-Covid illness will be seen by their usual local GP, but those with fatigue may also be referred to "Pete Gladwell's fatigue service" in Bristol (I don't know if this is the same thing as the Bristol ME service or to what degree they overlap.)

It suggests that at least in this area, the push to reclassify ME as MUS/FND will likely gather up Long Covid in its progress. It would be interesting to know if the same thing is happening in other parts of the country.

Does anyone know if Pete gladwells service was called ‘ME service’ and has now been turned into ‘fatigue service’ and when that happened and what that meant?
I’ve tagged @Tal_lula as I recently re read a post which mentioned it

 

[bobbler]

I was told last week by the Long Covid service in Gloucestershire that they expect their funding to end and the service to close in spring 2025. After that, people with general post-Covid illness will be seen by their usual local GP, but those with fatigue may also be referred to "Pete Gladwell's fatigue service" in Bristol (I don't know if this is the same thing as the Bristol ME service or to what degree they overlap.)

It suggests that at least in this area, the push to reclassify ME as MUS/FND will likely gather up Long Covid in its progress. It would be interesting to know if the same thing is happening in other parts of the country.

That’s one to flag to the ME charities

I don’t mean this to sound as it does as I don’t think they are terrible - just wonder what they are doing with all the recent stuff partnering with Gladwell

but from the perspective of their own existence (and therefore trustees) this is highly significant for them to consider