The disappearance of ME/CFS

[Tal_lula]

Thanks to @Tal_lula for posting a letter from the Bristol NHS ME/CFS Service explaining why a person who meets ME/CFS criteria following a Covid-19 infection cannot be given an ME/CFS diagnosis. I think this is very important evidence.

Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell
A copy of the original letter is attached to the post there and there are some posts commenting on it. I have copied the text here, to facilitate quoting.



It is difficult to imagine how more errors of fact and logic could be fitted into a brief letter than what are there.

In an unexpected twist, one of my best friends has (sadly) just been diagnosed with "Long Covid/ME/CFS" by none other than...The Bristol ME Service!!! The OT (not one I know) who diagnosed my friend said that it's "essentially the same thing and an acute Covid infection was clearly the trigger". Paradoxically, they then said (like the letter) that one of the main differences is that they expect the Long Covid cohort to recover whereas ME/CFS is expected to be a lifelong condition. Even my friend shrugged his shoulders at that.

 

[Hutan]

Evidence of how ME/CFS can be disappeared.
UK : South Coast fatigue service'

 

[Yann04]

I was rethinking about that appointment I had where I got diagnosed with FND and I remembered an interesting detail.

(Note this is significant because the doctor I saw is officially a researcher in the neurological consequences of COVID, helped write the country guidelines for long COVID, and teaches the medical school).

Anyways what I remembered was that he didn’t actually deny my ME/CFS diagnosis. He said CFS is a part/type of FND, and not a very useful one, so I should use the FND label in the future. He then prescibed GET/CBT, and when I mentioned pacing, he told me pacing didn’t mean using a wheelchair like I was, but doing a little bit more each day until you can go back to work.

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

 

[bobbler]

I was rethinking about that appointment I had where I got diagnosed with FND and I remembered an interesting detail.

(Note this is significant because the doctor I saw is officially a researcher in the neurological consequences of COVID, helped write the country guidelines for long COVID, and teaches the medical school).

Anyways what I remembered was that he didn’t actually deny my ME/CFS diagnosis. He said CFS is a part/type of FND, and not a very useful one, so I should use the FND label in the future. He then prescibed GET/CBT, and when I mentioned pacing, he told me pacing didn’t mean using a wheelchair like I was, but doing a little bit more each day until you can go back to work.

(Also this person had terrible bedside manners, after making me do exercise testing (I was already severe at this point) we went back into his office and I immediately laid down on the examination bed thingy and he told me “Sit up, I don’t speak to patients laying down”)

Sounds like someone who ‘does what they want’

I find this outright saying they have ‘beliefs’ from some bps character’s extraordinary- because it is a belief system they’ve been selling

one that’s separate from science / using scientific principles and methods and isn’t a proper religion

do they really think that if they just say you’ll increase then go back to work that’s now the truth and if said person doesn’t it’s an attitude issue not them failing on their job part where they have done either science or medicine

it also sounds like they’ve decided people have to use FND now because otherwise you won’t get access to this ‘treatment’ he justifies his kick up the backside attitude as …. So it’s ok that ‘new term’ has to be used? Which really shows how habitual and without thinking oh at least some in the profession just take word and skirt things which are actually regulations and scientific learning points. Ie won’t be educated, won’t be told what to do.

and lots won’t unless someone imposed boundaries and penalties gif certain personality types ie you won’t get to treat of diagnose certain categories of patients if you won’t stop being stubborn and will update your learning .

it’s not surprising that when we see Backe trying to pull the other one on expecting patients to act appropriately and be the ones eating humble pie to them as if they were lucky to be harmed instead of the other way around - and no one is just saying let’s get some better thinkers in there - that in other parts of the tree there’s this?

 

[bobbler]

In an unexpected twist, one of my best friends has (sadly) just been diagnosed with "Long Covid/ME/CFS" by none other than...The Bristol ME Service!!! The OT (not one I know) who diagnosed my friend said that it's "essentially the same thing and an acute Covid infection was clearly the trigger". Paradoxically, they then said (like the letter) that one of the main differences is that they expect the Long Covid cohort to recover whereas ME/CFS is expected to be a lifelong condition. Even my friend shrugged his shoulders at that.

Am I remembering rightly that was it you who went thru then saying they didn’t diagnose those with LC with me/cfs ‘because of the figures/not mixing cohorts’ or something? I can’t remember how long has passed between that and this of whether the change is different OT or suddenly they’ve different funding or layout of anything?

 

[Yann04]

one that’s separate from science / using scientific principles and methods and isn’t a proper religion

It’s compatible with the literature in a small psychsomatic echo chamber. They are the self appointed experts on FND (since they created it), and therefore they must be correct.

Their papers serve as a self admirtion society, consistently hyping up each others theories without bringing sound evidence.
This happens until whatever they say becomes so embedded in their literature, repeated hundreds of times, that it must be true, and no one bothers to question it.

 

[bobbler]

It’s compatible with the literature in a small psychsomatic echo chamber. They are the self appointed experts on FND (since they created it), and therefore they must be correct.

Their papers serve as a self admirtion society, consistently hyping up each others theories without bringing sound evidence.
This happens until whatever they say becomes so embedded in their literature, repeated hundreds of times, that it must be true, and no one bothers to question it.

But that literature is generally not scientific much of it is plain propaganda selling a belief system without either containing proper research or the conclusions being based on it if there is any underneath it. Much of what I’ve read would count as ‘manifesto’ rather than trial or scientific project

 

[Yann04]

Yes for sure. But it’s got the aesthetic of and the cultural recognition as “science” therefore it is accepted as scientific in our cultural paradigms, even though it is incompatible with the scientific method.

“sciencewashing”?

 

[bobbler]

Yes for sure. But it’s got the aesthetic of and the cultural recognition as “science” therefore it is accepted as scientific in our cultural paradigms, even though it is incompatible with the scientific method.

“sciencewashing”?

Or “para science” / “pseudoscience”

it’s an important term for us to get right anyway - I watched the channel 4 documentary “undercover:exposing the far right” and that focused on an org whose main two branches were: marketing , research (to be able to cite claims etc)

so differentiating any old ‘paper’ from science that stands up seems a question that’s going to become increasingly needed , and having a term /terms things that charade as that or are just all belief system and claims without the substance underneath in the form of proper science needed too in order to single them out

 

[SNT Gatchaman]

“Sit up, I don’t speak to patients laying down”

Oh dear. (Speaking as someone for whom close to 100% of patients were lying down when we were speaking.)

 

[forestglip]

See the following relevant thread:

Sweden: Have the ME and CFS clinic in Gothenburg found a loophole to avoid the diagnosis ME?

In 2024, a new ME clinic was opened under the auspices of the Västra Götaland region. At the time, the website stated that the focus was on investigation and time-limited treatment and that patients would then have continued care via primary care.

Here is my summary of the information that was available in May 2024. Auto translated link: New ME clinic in Region Västra Götaland

In the spring 2025, there were rumors that the clinic was removing ME diagnoses and I contacted the clinic and asked questions about their medical investigation process. What emerged from the contact with the responsible manager and physician is very worrying and today I have published a series in three parts where you can read my communication with the clinic but also my analysis of their arguments.

In short, it seems that the clinic thinks it has found a loophole in the Canadian criteria that allows them to avoid establishing the diagnosis of ME in their patients. This is despite the patients meeting the criteria for ME and living with PEM. Instead they seem to use the term persistent physical symptoms, or functional somatic symptoms, which they say are differential diagnoses to ME

Here is a link to an auto-translation of the first part: What is really happening in VGR's ME care? Part one (The other two parts are also published and links is to be find in this post)