NICE ME/CFS guideline - draft published for consultation - 10th November 2020

Will do one asap

 

AfME's survey on the draft guidelines gathering patient opinion.
https://www.surveymonkey.co.uk/r/NICE-MECFS

Code:

https://twitter.com/actionforme/status/1327293439097102336

https://twitter.com/user/status/1327293439097102336

 

This may have already been mentioned here but could we ask that the guideline explicitly state that ME/CFS is not MUS? Can this guideline be used to close those doors that we know the BPS brigade will try to use to sneak in through the back?

Another thought: where the guideline references ME/CFS as a "serious illness" would it be unreasonable to suggest that it specifies it as a "serious PHYSICAL illness"? I understand that 'serious illness' should be adequate for most conditions but given our history with those who try to psychologize our illness maybe this emphasis on physical illness is warranted.

 

I think this would simply encourage psychiatrists to feel they are right to dismiss the guideline as activism.

As Prof Maria Fitzgerald pointed out at a CMRC meeting, all illness is physical, including mental and psychiatric illness. Distinguishing physical from mental illness is bogus - just not for the spurious reasons given by BPS.

For physicians like me who treat everything as biomedical the additional physical would also just sound like propaganda. Just like the obsession with multidisciplinary and person-centred and so on. We don't need it.

 

I do appreciate your sentiment here, but I think that would just open the door for the BPS crew to fire back at us "Well OK, explain it to us then." The simple truth is that ME/CFS is medically unexplained in many ways. The problem with MUS is the presumption that anything medically unexplained must be psychiatric, which is complete "bullocks". But because of the deliberate ambiguity, any suggestion of saying ME/CFS is not MUS, will be deliberately twisted to make it sound like we are asserting ME/CFS is not medically unexplained, which is readily disprovable with the current level of research. Cans of worms and quagmires come to mind, and I think far better to stay clear of, lest we seriously undermine our credibility.

Like you, I'd love it if we could sort this issue, but I think it is far too early, and a separate battle that must be addressed well away from the NICE guideline review, which we absolutely must not put at risk. Introducing MUS into that process would seriously muddy the waters I think, and could be a gift to the other side.

 

Okay, but we can say that it doesn't have a psychosocial cause and theories of symptom focusing, false illness beliefs, etc have no validity?

 

In Energy Management, 1.11.2 we have:

In Physical Activity, 1.11.16 we have:

The BPS deconditioning model revolves around pwME being deconditioned. Without the deconditioning bit then the false illness beliefs, symptom focussing, etc fall apart anyway. I'm not sure if a NICE guideline needs to - or even should - go further than that.

True, there may be a small minority of people misdiagnosed with ME/CFS who actually do only suffer from deconditioning and have problems accepting that, but that would just mean this guideline would be non-applicable to them.

 

I'm glad the guideline is explicit against the deconditioning / false illness beliefs theory. (I was very releived to read this, and enjoyed imagining having those key sentences tattooed onto my body )
But, i noticed about a year ago various medics i have had to see seemed to stop talking about deconditioning/fib and started up on this new thing of an "over sensitised system"... I was to calm my CNS, meditate, stop focusing on my symptoms, breathe (?!), exercise, sleep hygene etc... and my "cfs" would get better... At the time i just assumed they could see where the wind was blowing with the deconditioning/false illness beliefs thing and were trying to find another way to justify giving the same nonsense. To me, it was just the same "cure" that looked the same as it always does, but with a new underlying theory.
I worry, as i don't think the new draft guideline would stop clinics doing this, because the NICE guidline is specific about it only being against "therapies" based on deconditioning, not therapies based on this new over sensitised central nervous system.

 

This seems a rather important point. It may be useful to make this point in one of the subforums dedicated to discussing changes or tighter language for the draft.

I'm not sure where that should be.

 

https://twitter.com/user/status/1327599728868159489

https://twitter.com/user/status/1327603790288211971

https://twitter.com/user/status/1327786307037392897


According to http://dradamgaffney.com/:

 

The way Action for ME influenced that Guardian article was not helpful. I hope that they realise this.

 

There was a time when nobody associated with Harvard would make themselves look as ill-informed as that.
Times have changed.

 

Yeah, no. Harvard Med has hardly been free of ignorance and scandals.

An example. https://en.wikipedia.org/wiki/John_Darsee

 

If I could be bothered, I'd be asking all of these 'medical experts' if they are arguing that we shouldn't believe in the recommendations from all NICE guidelines, given that they are arguing that the review process isn't valid in this particular case. And if they are arguing that it is only this guideline review process that shouldn't be trusted, what about the process was incorrect and why should we have trusted it before?

 

We should be careful with that, until the final version is published. Forces may be on manoeuvre

 

https://twitter.com/user/status/1327911144573587458

 

I see that Adam Gaffney writs for the Guardian on USA healthcare. He is an advocate for a National Heath Service.

 

"Multiple randomized clinical trials have found that exercise therapy provides some benefit to patients with chronic fatigue syndrome. However, this treatment is being removed from clinical guidelines."

Yea when you start off with "Multiple randomized clinical trials" then you should be able to provide evidence i.e. of well conducted studies (not evaluated subjectively i.e. using questionnaires) which support this statement---