UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Very good point. When ME was renamed CFS and reinvented/redefined as mere 'fatigue', contrary to the WHO classification and the original Ramsey definition, it was the BPS cult themselves who did that, so that was OK and they were somehow allowed to get away with it. Despite flying in the face of scientific evidence and all the biomedical research that had been going on into ME before that happened. So in principal, they really shouldn't whine about another name change and definition change.

They really should just let go and move on at this point, perhaps move back into their field of psychiatry and leave physiological illnesses to the experts. Well, one can dream!

 

Maybe this happenning is sort of insightful. The bit they objected to most was it being required for research samples in order to be able to claim it was representative of the condition.

But then we have RCGP being happy to mention 'PEM' as a 'phenomenon' in long covid, which is different

like it is just 'a symptom to manage' is part of the whole deconstructing thing (separate off 'brain fog' instead of it being exertion-induced , and try 'brain-training' to prove people who didn't do sudoku before can get slightly better at it)

vs ME/CFS being a condition where PEM is really an indicator of something happening when a threshold is broken x hours earlier. And how we can indeed get worse if we are consistently or cumulatively (or once really ill, it doesn't take much) 'going over' as deterioration that happens in the longer term.

I do think we have to be very conscious of how they will want to muddy PEM/PESE

and I can see this as being pitched in the way in the early days some of us were kindly just told pace your life within your limits is your lot.

Little did we know that was more moral as a solution than the idea that some would actually even lie about that.

It is about avoidance all right. Avoidance to look the disease in the eye and seriously want to understand it to get to the bottom of what is going on - and we can all say the stuff going on in the background but I don't fully get why noone is intrigued - other than these mis-sells of people getting so many distacter messages thye just aren't realising.

If you had another illness, that wasn't blighted by it being in a demographic hit by misogyny or other things, where someone got it and then if they eg now did a walk to the end of the road they got more ill, then generally the reaction isn't 'well just re-sort your life not to expect or do that'. In fact people would be turning up having tried to continue their lives and just be describing symptoms. And how much iller they were getting months on, as they keep trying to push through.

It shouldn't ever have got to the point where medicine thinks that the approach to this is to 'just treat each symptom'. NO matter how good or bad their ability to even do that is (very bad, as it is all seemingly based on the behavioural paradigm, they don't even realise isn't treatment but assumption of it being based on 'deconditioning' - are they that stupid to not understand sensitisation/deconditioning/aversion all = same thing)


So the worrying thing about this is. When I try and get my head around how twisted in rhetoric their thinking is, you can see them being OK because it works for them to develop some rehab 'treatment' for 'PEM'.

When we all think of PEM/PESE as a cardinal feature of ME/CFS because it shows 'there is a process going on due to the illness'.

I think these long covid people are being naive, useful idiots even, in not seeing the potential for them to just start some kind of bonkers research dissociating the link btween overdo-->24hrs-->symptom exacerbation

and from our experience there is no guarantee that advice isn't going to come from an area that bases it on 'assumes'

and almost certainly in the same area the research with poor methods will never have a null hypothesis so they'll keep on getting less and less robust in a desperate attempt to try and prove something that isn't there by inserting more and more bias

the only weird bit in the next (repeat) chapter of the story is that, like when the internet and social media was predicted to be likely to yield transparency for consumers (before they foresaw all the influencer and tripadvisor ending up with professionals being hired for reviews and so on stuff), we now have the 'enter the time/era of the fitbit type stuff'

It still doesn't change much because if it is still basing it on the same flawed and uncontrolled circs with short-term measures then we have the same problem with because noone can 'count' at the end if they let themselves get too ill and/or if they don't complete the exercises.

It's called a 'barrier to entry' in marketing.

And that is if you were masochistic/altruistic/determined to prove truth enough that you kept going back for the same or worsening PEM by repeating exactly the same cumulative exertion - but people can't and don't so they cut out the trip to the supermarket, shorten their showers, social lives, conversations and so on.


They really haven't got anywhere until they've got it well-defined in research and (I'd suggest they worked with us on this one) they can get them to change their research methods and approach and terminology to appropriately reflect what PEM really is. And that 'how it operates' has to be tested and actually shown/not assumed using methods that will be genuinely likely to not be able to distort the picture.

 

Just noted that the evidence review of non-pharmacological interventions by NICE is available separately on Pubmed (meaning that most reviews will easily find it).
Evidence reviews for the non-pharmacological management of ME/CFS: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management - PubMed (nih.gov)

 

Has anyone counted the outcomes for the guideline after it was published, i’m looking for a published reference ideally. The only one I could find was Brian Hughes but it was for the draft guideline.

‘Of these 236 outcomes, the evidence for 205 was deemed to be of “very low quality”, and 31 were deemed to represent evidence of “low quality”.’

https://www.bmj.com/content/371/bmj.m4774/rr-4