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

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I'm sure this point has been made earlier in this thread, or perhaps elsewhere, but this guideline revision takes quite a lot of stuff away but doesn't add much else. We are really left with self-management. Of course, this is much better than being given bad or potentially harmful advice, but it is also quite sad, and a clear indication of the lack of progress in understanding this illness.

What's clear is that the NHS provision for ME/CFS services needs radical overhaul. The current situation is a mess, and with the new guidelines there is going to have to be substantial changes. I have not managed to read the full guideline yet, but I get the feeling that this point has not been taken seriously enough.

Is there anywhere in the guidelines (maybe in the evidence reviews) that talks about the commissioning and provision of specialist services, and how they should look in the future?

Edit: The information I need to read is partly in evidence reviews I and J, if I am able to get round to it.
 
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Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients.

We need to change our thinking but unfortunately not the way it is being done now.

We need to stop thinking exercise is always good and the way to deal with illness is to fight it. We live in a society that lauds cancer patients running charity races calling them heroes.

We need to learn how to say no when friends encourage us out for a bit of fresh air and tell us we need to be taken out of ourselves.

We need to learn that we might be able to do something but not to attempt it unless we are sure there will be no pay back.

And we need to change our thinking to get over the reluctance to use aids.

But that is not going to happen until the "experts" learn what ME actually is.
 
Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients.

We need to change our thinking but unfortunately not the way it is being done now.
I agree new patients need to understand how to self manage in a new way. I very much doubt CBT therapists are the best providers of guidance on how to do this.

I think very clear explanations of what is needed and why, both by a health professional and in writing, help with reorganising one's life to manage cutting back activity drastically, including financial and practical help, and peer support from more experienced patients on helpful strategies would be far more helpful than a course of CBT.

Before the days of GET/CBT etc. there was the 'old fashioned' idea of convalescence. It was accepted and understood that people who felt too ill to work or be at school needed to take time out to rest. People were told not to try to push back to work if they didn't feel well enough. At least that was my father's experience in the 1930's to 1960's when he had a 'recurring virus'. And my own experience in the 1970's when I had prolonged glandular fever.

It is society and the health profession that need to change their thinking.
 
You are right that proper management and explanations work well, after all, we have all learnt so much from sharing experiences on the likes of this forum.

If the basic knowledge of ME was widely known so that family, friends and employers have a good understanding that would be enough and people may not have the problems I had and feel CBT (or some sort of therapy) would help. It is vital that steps are taken by the medical establishment to get us there.

My problem is that I was completely unable to withstand pressure to do things I knew would make me ill. Even after all these years I get caught up in what I feel obliged to do. I also have a problem with doing too much because I desperately want to do them but that is a different matter :)

I used to sneak walking sticks out of the house because I did not feel able to justify them things like that.

Long ago I was in a trial of psychological treatments for migraine and the guy I saw was very helpful at giving me ways of being more assertive. It was summer and he told me to think about what I wanted in any situation which was a stunning concept for me. It was so much fun, I bought a pair of shoes because I liked them not because my last pair had wore out!
 
Research director at the Norwegian Institute of Public Health of course links to SMC's article. It doesn't seem any tides are about to turn there..

hmm, well like most of the 'experts' at the SMC they probably haven't read the whole guideline and the evidence it was based on (the PACE contingent just seem to be p***** off that their beloved trial was given the :thumbsdown:)
 
I read through the expert submissions and absolutely fantastic contributions by Professor Edwards and Dr Muirhead.

It almost appears as if Dr Husain did not understand the assignment, what a sad, sorry mess. As arguments in favor of the psychosocial paradigm go, this is it in a nutshell: we do this because we do this. No reasons given or necessary. They do this because they have been doing this for a while and intend to continue doing this, not because it is needed or useful but simply because they have been doing this.

At least it's honest in its complete lack of a rationale or evidence.
 
It almost appears as if Dr Husain did not understand the assignment, what a sad, sorry mess. As arguments in favor of the psychosocial paradigm go, this is it in a nutshell: we do this because we do this. No reasons given or necessary. They do this because they have been doing this for a while and intend to continue doing this, not because it is needed or useful but simply because they have been doing this.

At least it's honest in its complete lack of a rationale or evidence.
Exactly my impression. As if no on else was going to put their head on the block this time around, and this poor chap drew the short straw, and so deciding to play it as safe and as uncontroversial as possible. Just my own personal impression of course, nothing more.
 
Does the guideline recommend occasionally checking patients to see if a more clearly defined disease is emerging?

.....but this guideline revision takes quite a lot of stuff away but doesn't add much else. We are really left with self-management. Of course, this is much better than being given bad or potentially harmful advice, but it is also quite sad, and a clear indication of the lack of progress in understanding this illness.

And we really need to see improvements for everyone with M.E.

If we are discharged from a CFS/ME Service in the UK, most of us are reliant only on our GP for any care. If we are really lucky they will refer us to another specialist if we ask (eg for PoTS) but otherwise no-one looks after us in the medical sense.
 
Actually CBT is very important, if not essential, to our well being especially in newly diagnosed patients.

I can see support (including psycological support but also practical support) can be really useful for new patients. But is CBT the best way to deliver psychological support. It seems very inflexible and manual driven and I believe is often given by 'CBT therapists' rather than fully trained psychologists. So I do wonder if it provides the best route for support.
 
I can see support (including psycological support but also practical support) can be really useful for new patients. But is CBT the best way to deliver psychological support. It seems very inflexible and manual driven and I believe is often given by 'CBT therapists' rather than fully trained psychologists. So I do wonder if it provides the best route for support.

Yeah. Unfortunately starting from a few governments ago, when IAPT started rolling out, pretty much most mental health / talking support services have now been replaced by CBT, or by group therapy. Two people close to me had to discharge themselves because they were sent to group CBT therapy for grief, and another was told they get CBT or nothing else (except medication) for significant issues that CBT had no place in treating.

I ended up unfortunately having many rounds of CBT for other things (physical and mental) for quite a period of years, pre-ME, (none of which it helped for) plus then the PRINCE trial. The place I live was one of the early adopters of IAPT, and CBT was rolled out with huge enthusiasm. One interesting thing is that even though it was “adapted” to different conditions, both mental and physical, I saw the same worksheets and print outs (with some variation) and the same type of “homework” again and again. And I do not see how it can help with ME symptoms, with the underlying assumption about thoughts - beliefs - behaviours - physiology and about spending so much energy analysing yourself and problem solving (but never helping with underlying issues), in the way it does. The “abnormal beliefs” part being removed does not impact this. (See the NHS definition for which CBT actually is!).

And, even the NHS page says that CBT has downsides:

“you need to commit yourself to the process to get the most from it – a therapist can help and advise you, but they need your co-operation

attending regular CBT sessions and carrying out any extra work between sessions can take up a lot of your time

it may not be suitable for people with more complex mental health needs or learning difficulties, as it requires structured session

it involves confronting your emotions and anxieties – you may experience initial periods where you're anxious or emotionally uncomfortable

it focuses on the person's capacity to change themselves (their thoughts, feelings and behaviours) ((I just want to add - and how all these things interact together and with physiology - as has been written in the NICE guidelines itself!))– this does not address any wider problems in systems or families that often have a significant impact on someone's health and well-being

Some critics also argue that because CBT only addresses current problems and focuses on specific issues, it does not address the possible underlying causes of mental health conditions, such as an unhappy childhood.”

https://www.nhs.uk/conditions/cognitive-behavioural-therapy-cbt/

Arguably, CBT is not the most helpful for us because ME is also impacted hugely by our families, who is caring for us, the support network we have, what our daily life is actually life and if we can pace effectively. CBT does not help in those (majority) of instances. We need help for this; practical help, advocacy, specialist help for coming up with daily plan and talking about our energy envelopes.( Specialist nurses, doctors, OTs, physios and maybe a specialist advocate in the clinic.)

Also, CBT requires a huge amount of energy even for a healthy person, as you’re basically analysing yourself. It requires homework and putting in practice “strategies” again and again. I’m sure anyone who has been through it before can talk about it. I did so much I got sick of it quite frankly, but what irked me the most was the fact it was the same assumptions & types of worksheets again and again (and all of this was without “abnormal beliefs” being in it). CBT isn’t the best choice for ME by any stretch.
 
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"The committee reinforced there is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS."

So how can they recommend all this 'management' and 'planning' about physical activity and exercise?

It just smells to me like the BPS clowns trying to save their reputations, empire, and incomes.

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The consultation will close at 5pm on 22/12/2020.

I am increasingly concerned that this is too short a time frame for a proper analysis and response. It has taken them years to get the draft done, so now giving just 6 weeks, and in the run up to Christmas, to respond to a lengthy, detailed, and critical document does not seem safe or fair.

I think we should request like an extension to that deadline. At least another month.
 
NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance


Link requires a login but I was able to access it with a google search of "chronic fatigue syndrome" and within last 24 hours.

https://www.bmj.com/content/371/bmj.m4356.full.print

The BMJ site has been good for posting responses. They don’t have to be tight letters that would be suitable for the print journal. Best to avoid ad hominems and ideally have a references section: but having just one or two references could be sufficient and an easy one is the BMJ piece itself.
https://www.bmj.com/content/371/bmj.m4356/rapid-responses
Just one response so far, from an Indian doctor: sympathetic, but doesn't say much of substance
 
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