The disappearance of ME/CFS

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.

 

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?

 

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?

 

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

 

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

 

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