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

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Tia said:
Our message should be 'CBT/GET is harmful' rather than 'ME is a physical disease'.
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Given the different US and UK contexts, I can understand why in the UK there is concern about the tendency for the argument to be made about psychological vs organic illness, and why in UK it seems to play into the hands of the CBT/GET ideological brigades. But raising that argument does not seem to trigger the reaction among US patients. It seems to me that if you're pushing back on the ridiculous theoretical and psychologically oriented framework for the GET/CBT approach, then you're essentially engaging in the psychological vs organic debate.
 
Snow Leopard said:
f you say "ME is a physical illness" then they often respond with the whole stigma-against-mental-illness/mental-illnesses-are-real/illnesses-involve-both-mind-and-body reflex.
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Perhaps we need to differentiate the target audience regarding this issue. What might be a good response to family and friends, might be an unfortunate feeding of a harmful narrative when stated in a conversation with a doctor (depends on the doctor) or in a public debate -- the wider the audience the more the risk to provoke the reflex described by @Snow Leopard I think.
 
I don't know other's experience, but I have never - in 30 years - had a medical doctor suggest directly to me that my ME (which they do sometimes refer to as 'CFS') is a mental health condition rather than a physical illness. Neither have they suggested I exercise more or that I am 'deconditioned'. Maybe I am just lucky in this regard, although I always naturally focussed on symptoms rather than any hypothetical aetiology in my discussions with GPs. The problem I have is that they cannot grasp just how severely my symptoms affect me and that the primary symptom is not 'fatigue'. This makes it very difficult in terms of having 'up to date' medical evidence when it comes to benefit applications and renewals.

However, I was diagnosed back in 1993 (with symptoms beginning in 1991 after a severe respiratory viral illness), long before the 2007 NICE guidelines clouded everything with CBT and GET. I actually received my diagnosis from a respiratory consultant, I guess my GP at the time felt this was the specialist I needed to see. It didn't make sense to me as I expected to see either an immunologist or neurologist based on my post viral symptoms.
 
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Tia said:
There's a comment in the comment section of this article that says,:

[...]

I think this is a common misunderstanding and, tbh, I can see why people with no experience of ME might jump to this conclusion - particularly given that it is a narrative that has been encouraged by high profile psychs. There are some very patient ME patients who have replied to the comment above. It's annoying to have to keep explaining ourselves but I do think it's useful to know what the common misconceptions are so that we can address them. I expect there will be many people thinking along these lines when the guidelines come out. I find I have to be very careful how I word things so that I don't sound as though a mental illness diagnosis is something I want to avoid because of shame or stigma, which couldn't be further from the truth.
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Could I suggest that this is a sufficiently important subject that it might be worth having its own thread, rather than hiding in a 1000+-post thread? There may already be one in existence, of course. A "what to say when people ask awkward questions about ME"-type thread, perhaps? I can certainly see one having a life way beyond the immediate "new NICE guidelines" discussion.
 
dave30th said:
It seems to me that if you're pushing back on the ridiculous theoretical and psychologically oriented framework for the GET/CBT approach, then you're essentially engaging in the psychological vs organic debate.
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But I don't think that is the case @dave30th . I push back on the theoretical framework because it is applied without adequate corroboration from evidence - in fact the evidence makes it implausible. Whether or not it involves psychology is not relevant.

There is also a lot of confusion over terms. The BPS people are saying that 'Your mind is stopping your body from being active, without you knowing it.' Like the Cartesian followers of Descartes who didn't quite get what he meant, the BPSers believe that there is a 'mind' that controls actions. They believe it can even without knowing it. But Descartes concept of mind was purely the act of reason, so by definition knew...

It all gets murky but the great majority of people agree with the Cartesians that we have a mind that influences the body and even without knowing it. So for the ordinary person there isn't anything particularly 'ridiculous' about the BPS theory.

I currently have a bad left knee. If I sit on a low bench I simply cannot rise without grasping something. I know that is because my brain predicts that if I tried without grasping there would be acute pain and it prohibits my muscles from working. The muscles are fine. I don't believe in the idea of a 'mind' that does things without knowing it but my brain certainly makes decisions for me without me knowing it.

Everything psychological is organic or biological anyway - so we end up going round in circles.
Perhaps more importantly I think the desire to have proof of 'physical' abnormalities can do a lot of harm if those abnormalities aren't real there. We want the right answer, and safe and effective care, that's all.
 
CBT/GET proponents are clearly proposing a psychological cause of ME/CFS - even if they try to hide this sometimes when interacting with the broader public.

In so far as this idea of a psychological cause is testable (to a limited degree) it's not supported by data and doesn't align well with patient experience. Pointing this out is important and seems to me "engaging in the psychological vs organic" debate.

There is a reason that CBT/GET proponents often pre-emptively frame "psychological vs organic" debate as something that should be avoided: because once you weigh in the for and against of both arguments, the organic side is much more plausible. Reality simply doesn't align with the proposed ideas of psychological causation.
 
strategist said:
CBT/GET proponents are clearly proposing a psychological cause of ME/CFS - even if they try to hide this sometimes when interacting with the broader public.

In so far as this idea of a psychological cause is testable (to a limited degree) it's not supported by data and doesn't align well with patient experience. Pointing this out is important and seems to me "engaging in the psychological vs organic" debate.

There is a reason that CBT/GET proponents often pre-emptively frame "psychological vs organic" debate as something that should be avoided: because once you weigh in the for and against of both arguments, the organic side is much more plausible. Reality simply doesn't align with the proposed ideas of psychological causation.
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From a practical perspective the BPS mob don't seem to be able to bring anything to the game/issue. If you objectively measure the baseline and the post intervention outcome [CBT/GET ---] then the intervention hasn't improved peoples health i.e. in terms of getting them back to their healthy lives - so it's a waste of public money.

I do wonder if there's a benefit in terms of being able to deal with your changed life i.e. from psychological interventions? However, I don't have any objective evidence to point to; in fact, if this was assessed then I wouldn't be surprised if it amounted to little more (or even less) than a caring Doctor showing an interest in their patient.
 
chrisb said:
The benefit, surely, is in getting difficult patients out of the door and having someone else persuade them that, if they don't improve, it's their own fault.
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Yip this rings true "The benefit, surely, is in getting difficult patients out of the door" @Jonathan Edwards pointed out that this was an attraction of the current NICE Guidance -- somewhere to refer patients to.

The second part "having someone else persuade them that, if they don't improve, it's their own fault" is something I'd more link to politicians and indeed the root of the whole PACE debacle - the perception that people with ME are physically OK and a bit of CBT and exercise will sort them out --- if they want to be helped of course.
 
FMMM1 said:
I do wonder if there's a benefit in terms of being able to deal with your changed life i.e. from psychological interventions? However, I don't have any objective evidence to point to; in fact, if this was assessed then I wouldn't be surprised if it amounted to little more (or even less) than a caring Doctor showing an interest in their patient.
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I have followed CBT/GET at Het Roessingh in the Netherlands and the experience was harrowing both from a physical as from a mental viewpoint. There was a lady there that had applied but was unable to partake in the activities set forth who was basically shamed for not being able to do so.

My experience there was milder at the time, but I did learn from them that I should be able to control my disease if I'd follow their instructions and increase my activity with small increments starting from a baseline. This was more or less pounded home continuously, if you want to get better you have to take charge and you have to follow our instructions.

So naturally when I didn't improve over the years but actually got worse every time I tried to push my activity a step forward I blamed myself. I followed the course there age 21, we were on the first floor with our group and I was allowed to follow the course with the grown-ups. There was a group with youth downstairs that had an even more intense and more prolongated treatment with CBT/GET, it could run well beyond half a year.

I only started to let go of my selfblame after my mom had bought a book from Michael Maes, detailing amongst other things why the BPS approach didn't work in M.E. At first I didn't even want to read it, but my mom convinced me to do it. This was about 5 years after the treatment I think. I still have lingering issues caused by their treatment which lead me to doubt and blame myself for things I know I shouldn't. But it's a reflex back to 5 years of doing my darnest on this wretched treatment of theirs.

I have seen 2 psychologists after my CBT treatment. Or well, one during the 5 years that I was still trying to better my condition myself. He wasn't helpful at all and even called me a stubborn bastard for not taking his bs wholeheartedly. He also was all about improving yourself through the magic of CBT.

The other psychologist I saw was one I had to visit because of my application for benefits based on my illness, wajong it's called in the Netherlands for youth. She asked all sorts of questions and I answered them truthfully, when I told her that I was very quiet in school from 13 years of age and didn't really stand up for myself is when she sprung to life. Just from talking to her it should be evident to her that I was perfectly able to stand up for myself but she offered to treat me for something I had problems with about 15-20 years ago anyway. She told the judge that was appointed my case that I wasn't lying about being sick and that I should be treated with CBT. Luckily I had already followed a treatment with that, so I wasn't ordered to do more of it. I wasn't going to anyway, benefits be damned. So eventually I was deemed sick, but I was deemed well enough to do work in a closed room devoid from sound or other stimuli for 45 minutes a day. Benefits denied.

This was before the change in stance regarding M.E. in the Netherlands though.

My experiences with psychologists are that they are at best unhelpful, at worst that they are harmful because the ones I have encountered have a very firm believe that you can overcome basically everything with the right training and/or mentality.
 
chrisb said:
I wonder when they briefed the poodles.
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What will be interesting is who the Science Media Centre roll out on Wednesday morning.

In the past as well as the usual suspects they usually have been also able to co-opt a few of the great and the good not directly involved in the ME/CFS, for example Dorothy Bishop’s endorsement the Smile study of the Lightening Process for children which could have left her very embarrassed if the establishment as a whole had not backed (or at least turned a blind eye to) this quackery.

I think whether they are able to induce this week any theoretically disinterested big names to attack the NICE process and conclusions will be a measure of how much has been achieved over the last few years. How many people will still be willing to risk their reputations and accept at face value the claims of a few, albeit eminent, clinicians/researchers when they try to turn on NICE?
 
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