NICE ME/CFS draft guideline - publication dates and delays 2020

I know we need to wait until November before we can comment on the new guideline, and Charles Shepherd, who is a member, but not a voting member on the ME guideline group is bound by confidentiality not to reveal what is in it. But I can't help being worried by what seem to me to be hints in this article that he is not happy with the draft, particularly,reading between the lines, maybe some sort of compromise of keeping CBT and removing GET.
I hope I'm wrong.
 
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She seems to be suffering from some kind of anxiety. I'm not one to speculate wildly, but if I were, I might be encouraged that she seems worried that the psychological input so far has not been enough to reach whatever result she thinks should be reached.
 
Jonathan Edwards said:
I am not quite sure what you are implying @Andy. Surely this £10m is just going the way of all the other multidisciplinary drivel - employing people with no idea what they doing to turn a political handle. it is already established that people with 'Long Covid' have no demonstrable reason for going on being ill so it will be more of the same of doing some exercise and having some patronising chat. The research on the 10,000 will not be well targeted and will conclude that nothing much is wrong-because that is what has been concluded for ME. That would be my prediction.
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Yes even a GWAS study @Simon M would be a meaningful way to try to understand the underlying reason why these people are still unwell - possibly even a control group for the Chris Ponting ME GWAS [DecodeME] study.

I agree, unlikely that a bit of CBT and GET is going to help get these people back to their old healthy life.
 
Trish said:
I know we need to wait until November before we can comment on the new guideline, and Charles Shepherd, who is a member, but not a voting member on the ME guideline group is bound by confidentiality not to reveal what is in it. But I can't help being worried by what seem to me to be hints in this article that he is not happy with the draft, particularly,reading between the lines, maybe some sort of compromise of keeping CBT and removing GET.
I hope I'm wrong.
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If true, that would be especially worrying given the way some clinics now conflate 'pacing' and GET. It could even help them, by letting them evade all of the bad PR around GET while changing little about how they work in practice or who is employed. I expect that those working at CFS clinics will have a considerable advantage in understanding how the guidelines will affect them and their interests, and know what 'compromises' will cause them the least trouble.

Given the professionals on the committee, I worry that they will want changes that are largely cosmetic, and about the way these clinics present themselves, rather than recognising that the people working at these clinics have not served patients well and are not a good use of money.

I know a couple of patient members of the committee are also members here, though cannot say much, so maybe they've been able to avoid what I see as traps built into the system... but I do worry that this is a process designed to make live easier for clinicians rather than patients, and that it's extremely difficult to get rid of the professionals who really need to go in order for real progress to occur.
 
Trish said:
maybe some sort of compromise of keeping CBT and removing GET
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"CBT" is simply the name for a tool, the same way that a "knife" is simply a tool. There are many different kinds, and many different ways they can be used or abused. If the right kind is properly used - not abused - then that is fine. For any serious illness, some people will be better able to cope with their physical problems, if they get help with how to deal with them. Nothing to do with any pretence of curing the illness, but simply about being able to better cope. IF CBT, in its right form and correct application, can help with that, then that has to be for the good. True for ME/CFS as for any other illness. And just like any other illness, it will be applicable to some patients and not for others.

The huge problem for CBT with ME/CFS, is that it is a type that is the wrong tool for the job, and is applied in a way that is totally inappropriate for ME/CFS. There is no such single thing as "CBT". The wrong kind gets applied in the wrong way, and then when we argue against that, its proponents pretend we are decrying CBT wholesale for ME/CFS. We ourselves must be very careful to not conflate the two; the BPS crown deliberately conflate the two when it suits them.

So we must be very careful. If - big 'if' I acknowledge - the new NICE guideline were to advocate a very different form of CBT, one that in no way purported to change the course of the illness itself, but nonetheless did help patients to better cope with their illness, then it would be ridiculous - and we would be seen as ridiculous - to dismiss it out of hand. We would need to give it very careful objective consideration. So if the new guideline has the CBT word-of-many-meanings in it, then we must not instantly be dismissive of that. First we must establish if it is the same old CBT-a-la-GET as always, or if not then is it still misguided, or is it actually of a form that might be helpful. I admit I find the latter unlikely, but must be careful to check nonetheless.

And if it included genuine efforts to assist with real pacing - nothing untoward masquerading as pacing - then that would also be fine by me. But I, like everyone else here, would take a lot of convincing of its genuineness.

The way we would really shoot ourselves in the foot, would be if a perfectly sane and helpful form of CBT was in the new guideline, but we argued against it simply because it was labelled "CBT". The real problem is that the form of CBT used for ME/CFS should never have simply been called "CBT". In another post a few weeks back I noted how, in the PACE therapists' CBT manual, they referred to it as "Complex Incremental CBT", which would have been a more honest and accurate description to have persisted with; it is not normal run of the mill CBT.
 
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Barry said:
The way we would really shoot ourselves in the foot, would be if a perfectly sane and helpful form of CBT was in the new guideline, but we argued against it simply because it was labelled "CBT".
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My problem with that is that there is no evidence that any form of CBT is helpful for pwME, for pacing or coping or anything else. We're supposed to be getting a guideline based on good evidence, not on speculation that there might be a good form of CBT that could be recommended for us.
Any mention of psychological therapies for ME would not be supported by evidence.
 
Trish said:
My problem with that is that there is no evidence that any form of CBT is helpful for pwME, for pacing or coping or anything else. We're supposed to be getting a guideline based on good evidence, not on speculation that there might be a good form of CBT that could be recommended for us.
Any mention of psychological therapies for ME would not be supported by evidence.
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Yes, I suppose the unfortunate truth there is that the medical profession has been so obsessed with the wrong sort of CBT for ME/CFS, that no one has ever bothered trialling truly supportive CBT.
 
Barry said:
Yes, I suppose the unfortunate truth there is that the medical profession has been so obsessed with the wrong sort of CBT for ME/CFS, that no one has ever bothered trialling truly supportive CBT.
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Why does practical and emotional support have to be called CBT at all? CBT is about changing behaviour through changing thoughts. There is no evidence for that bering relevant to ME or likely to be. I see it as something quite different from support, which is free of any cognitive theory base and is just part of looking after people in the sense that we all assume we have a duty to do do all the time.

I think we have to ask whether 'truly supportive CBT' actually means anything more than giving support and if not forget it. If it does, I strongly suspect it must be tainted with theory about what people should be told, beyond being honest and compassionate. That has to be off limits. So I cannot see there is a real option to discuss here.


The CBT proponents are currently saying that it does not really matter if PACEshowed no benefit from ME CBT because that is not what they now do anyway. What they now do is 'tailored to the patient', which seems to mean that the therapist makes amp a story in their head about what the patient's particular cognitive problem is and tries to manipulate that. It not only has no trial evidence base at all but is nothing to do with support either as far as I can see. It is pure busy-bodying of a very sinister kind.

I would not be surprised if the draft guidelines mention 'general' CBT as if meaning support. I personally think this cannot rejustified and makes a mockery of the whole process of evidence assessment.
 
Jonathan Edwards said:
Why does practical and emotional support have to be called CBT at all?
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On the NHS website they say they also offer 'counselling':
Counselling
Counselling is a talking therapy where you talk in confidence to a counsellor. They help you find ways to deal with difficulties in your life.

You may be offered counselling on the NHS if, for example, you:

  • are struggling to cope with a long-term condition
  • have chronic pain
  • have an addiction
  • are having fertility problems
Counselling on the NHS usually consists of 6 to 12 sessions.

Read more about counselling.
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but if you go to the page on counselling the emphasis is switched to CBT (see the little video).
In fact most of the description is the same as that under CBT.

I wonder if there is still such a thing as counselling on the NHS anymore, or is CBT the only real option?
https://www.nhs.uk/conditions/stress-anxiety-depression/types-of-therapy/
 
Jonathan Edwards said:
Why does practical and emotional support have to be called CBT at all? CBT is about changing behaviour through changing thoughts. There is no evidence for that bering relevant to ME or likely to be. I see it as something quite different from support, which is free of any cognitive theory base and is just part of looking after people in the sense that we all assume we have a duty to do do all the time.

I think we have to ask whether 'truly supportive CBT' actually means anything more than giving support and if not forget it. If it does, I strongly suspect it must be tainted with theory about what people should be told, beyond being honest and compassionate. That has to be off limits. So I cannot see there is a real option to discuss here.


The CBT proponents are currently saying that it does not really matter if PACEshowed no benefit from ME CBT because that is not what they now do anyway. What they now do is 'tailored to the patient', which seems to mean that the therapist makes amp a story in their head about what the patient's particular cognitive problem is and tries to manipulate that. It not only has no trial evidence base at all but is nothing to do with support either as far as I can see. It is pure busy-bodying of a very sinister kind.

I would not be surprised if the draft guidelines mention 'general' CBT as if meaning support. I personally think this cannot rejustified and makes a mockery of the whole process of evidence assessment.
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Yes, I've been thinking about this a bit more. If I'm feeling down, confused or upset about something, and need to get out and try and sort myself out, a standard strategy I have for that is to go for a walk - helps me sort all sorts of stuff out in my head. (For anyone who does not already know, I don't have ME, my wife does). It is a behaviour involving physical activity that helps my ability to cope mentally with issues, and either resolve or better come to terms with them; I'm not that unusual I don't think. To me that comes naturally these days. For others it might be a behavioural change that could help them deal with their issues, if it does not already come naturally to them. It's just an example. So to me it is not strange that certain behaviours can help with emotional support, possibly involving behavioural changes. To dismiss that possibility out of hand would be an own goal I think.

But I realise, after thinking further on @Trish's post, that virtually any form of CBT would encourage exercise of some kind, given how for most people - most illnesses even - it helps people mentally. But of course there will be some illnesses, ME/CFS most especially, where that approach is totally flawed. And for ME/CFS is most misunderstood.

So from yours and Trish's posts, I would modify my thinking from my earlier post, in that any mention of CBT in the draft NICE guideline is extremely unlikely to be proven suitable or safe for ME/CFS, even if demonstrated so for other seriously incapacitating illnesses. And that any arguments of ours need to be based on such, emphasising that any supportive therapy involving exercise of any kind needs its own trials for ME/CFS to ensure it is safe. Especially as even cognitive activity can be such a problem.

I guess the thing is that seeing as how the role of exercise is so misunderstood in ME/CFS, then the applicability of any form of therapy that encourages exercise for whatever reason, cannot be safe unless there is good evidence showing it to be.
 
Sly Saint said:
On the NHS website they say they also offer 'counselling':


but if you go to the page on counselling the emphasis is switched to CBT (see the little video).
In fact most of the description is the same as that under CBT.

I wonder if there is still such a thing as counselling on the NHS anymore, or is CBT the only real option?
https://www.nhs.uk/conditions/stress-anxiety-depression/types-of-therapy/
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Friend of friend who is a trained counsellor, complains that she is only ever asked by referring doctor to "do CBT", not select the type of therapy that she deems most appropriate for the patient's actual situation!

I guess this is cheaper generally for NHS as they can churn out CBT therapists, with minimal training.

CBT seems to imply that if you can change your thoughts about a problem, then all will be fine. So. if you are not fine it is your fault!
 
MEMarge said:
Friend of friend who is a trained counsellor, complains that she is only ever asked by referring doctor to "do CBT", not select the type of therapy that she deems most appropriate for the patient's actual situation!
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My question would be how anyone can know what is the 'most appropriate' therapy' when there are no valid trials of any of them. One of the things I focused on at the NICE committee session was pointing out that if effects are of the sort of size suggested by PACE then it would be completely impossible for therapists to identify what worked for anybody in routine practice.

I am pretty sure that therapists assume they know what is best for a certain person based on some theory or other, that has no evidence base.

For me, counselling isn't even a 'therapy'. It is just an opportunity to provide support. If it is more it needs to be tested just like Zantac or cancer surgery. We don't treat different people with cancer different ways because we have a theory about each of them. We do it because of evidence from trials.
 
Having worked through things with others for a regional guideline in my country, my view is that medical guidelines for ME/CFS should note the debilitating nature of ME/CFS and the resulting need for support.

Here, where there is no specialised care for ME/CFS, the first line of support should be acknowledgement of the difficulty the person and their family is facing, assisting in practical ways (applications for welfare benefits, disabled parking, home help services, ensuring family and employer/school understand) and referring the patient to local and online peer support.

If, after that, the person is depressed or anxious, then treat them as a person coping with a difficult life situation who is depressed and anxious. Follow the guidelines for depression or anxiety disorder, which hopefully include compassionate counselling.

The problem we have here, and I'm sure that we aren't alone, is that we have not identified any psychologists/counsellors who understand ME/CFS. Even if we had, with the free mental health services that don't involve a 6 month or so wait, you can't choose who you see. So, a person with ME/CFS seeing a counsellor is more likely than not to be exposed to unhelpful attitudes and information.
 
Hutan said:
Having worked through things with others for a regional guideline in my country, my view is that medical guidelines for ME/CFS should note the debilitating nature of ME/CFS and the resulting need for support.

Here, where there is no specialised care for ME/CFS, the first line of support should be acknowledgement of the difficulty the person and their family is facing, assisting in practical ways (applications for welfare benefits, disabled parking, home help services, ensuring family and employer/school understand) and referring the patient to local and online peer support.

If, after that, the person is depressed or anxious, then treat them as a person coping with a difficult life situation who is depressed and anxious. Follow the guidelines for depression or anxiety disorder, which hopefully include compassionate counselling.

The problem we have here, and I'm sure that we aren't alone, is that we have not identified any psychologists/counsellors who understand ME/CFS. Even if we had, with free mental health services that don't involve a 6 month or so wait, you can't choose who you see. So, a person with ME/CFS seeing a counsellor is more likely than not to be exposed to unhelpful attitudes and information.
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Honestly if the severity were recognized and emphasized to the point where family would take up most of the slack and nothing else happened, if ME patients actually got support at home in a way that truly gets the severity and the need for this help, about half the total disease burden would vanish entirely, as would most of the suicides. Of course that would require it to be a recognized disability, but that's still cheaper overall when you factor in all costs so not an issue.

Don't even need to spend a single dollar of health care budget or provision a single service. Don't even need to do a damn thing more and it would do more to improve quality of life than literally all the misguided efforts so far, 100x over. Of course in addition to competent professional services it would be even better, but it is the continuing discrimination that is itself by far the most significant factor in the horrible quality of life.
 
Asking these psych researchers and clinicians to change is going to be a huge task.

To go from:
CBT = you are not sick, why are you not doing this?
to
ACT = yes, you are sick, make a commitment not to do these things.

There is a reason these researchers have not suggested to NICE different mental health therapies. They demonstrate cognitive rigidity. There are so many mental health treatments, why do they stick with CBT? Why do we see publication after publication for CBT? Think for a moment what it would take for Psych Industry to agree CFS is a medical disease, that private clinics need to teach the patients to accept their disease and learn techniques for living with the disease. Decades of publications would suddenly go down the drain. The Psych Industry's prestige would be damaged. The only saving grace would be the billable hours of ACT. That is the Psych Industry's weak spot, billable hours.
 
Jonathan Edwards said:
My question would be how anyone can know what is the 'most appropriate' therapy' when there are no valid trials of any of them.

For me, counselling isn't even a 'therapy'. It is just an opportunity to provide support. If it is more it needs to be tested just like Zantac or cancer surgery. We don't treat different people with cancer different ways because we have a theory about each of them. We do it because of evidence from trials.
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I like how American psychologist and journalist Gary Greenberg puts it --->

..... (he is) critical of cognitive behavioural therapy, which he calls “a method of indoctrination into the pieties of American optimism, an ideology as much as a medical treatment.”
 
chrisb said:
I thought that it was now known, thanks to Gerada's ground-breaking and visionary work, that the most appropriate treatment is the one which leaves the doctor or therapist feeling better.
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Nailed it.

TrixieStix said:
I like how American psychologist and journalist Gary Greenberg puts it --->

..... (he is) critical of cognitive behavioural therapy, which he calls “a method of indoctrination into the pieties of American optimism, an ideology as much as a medical treatment.”
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I call it the 'optimism ideology'.

Always try to make the best of your situation? Sure. No argument there.

But beyond that it quickly becomes toxic delusional nonsense. And it almost always ends up there.
 
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