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

Status
Not open for further replies.
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.
 
Jim001 said:
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.
Click to expand...

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.
 
Last edited by a moderator:
Jim001 said:
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?
Click to expand...
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.
 
Last edited by a moderator:
strategist said:
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?
Click to expand...
In Energy Management, 1.11.2 we have:
Explain that it:
...
does not assume that deconditioning is the cause of ME/CFS
Click to expand...
In Physical Activity, 1.11.16 we have:
Do not offer people with ME/CFS:
...
structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS
Click to expand...
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.
 
Jim001 said:
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?
Click to expand...
This is a concern for me too. They are just going to change labels, and of course have been doing so for some time. Then they can innocently say that they have not diagnosed the patient with ME, but with MUS/health anxiety/whatever, therefore the guidelines for ME don't apply. Or at least that such diagnoses are in addition to ME, and they are only treating for those labels, not for ME.
 
Last edited by a moderator:
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.
 
Kirsten said:
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.
Click to expand...

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.
 




According to http://dradamgaffney.com/:
“Adam Gaffney is a physician, writer, public health researcher, and advocate. He practices pulmonary and critical care medicine at the Cambridge Health Alliance and is an Instructor in Medicine at Harvard Medical School. His research focuses on healthcare financing, reform, and equity, and disparities in lung health. He writes about the policy, politics, and history of health care. He serves as President of Physicians for a National Health Program, a non-profit organization that advocates for Medicare-for-All healthcare reform. He is on twitter @awgaffney.”
Click to expand...
 
Robert 1973 said:




According to http://dradamgaffney.com/:
Click to expand...

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?
 
I have just filled in the Action for ME survey here that they are using to help wtih their submission to help with the consultation. It asks relevant questions and explains them well, and has space for comments. Well worth doing.

I also think we need to be realistic in our feedback to NICE. They are not going to completely rewrite the guideline, and I suspect are unlikely to either add or delete whole sections.

What we can try to do is to get them to refine the wording so it avoids loopholes for the BPS people to continue what they are doing and pretending it's covered in the guideline.

I hope we will also be able to persuade them to give a clearer picture of just how disabling even mild ME is, and what a wide range of difficult, disabling and unpleasant symptoms we contend with every day even when successfully staying within our energy envelope.

[Edit: I was thinking specifically about trying to get them to remove the CBT section when I suggested we're unlikely to achieve big changes. That doesn't mean we can't suggest it as our ideal preference, but I think we need to also suggest alterations for improvement of the existing section in case it stays.]
 
Last edited:
Andy said:
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?
Click to expand...

"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---
 
Status
Not open for further replies.
Back
Top Bottom