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

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.

 

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.

 

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!

 

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 )

 

Mrs Floptop seems to be planning for a smooth transition to another 4 year term for the said 'experts'.

 

BMJ: NICE backtracks on graded exercise therapy and CBT in draft revision to CFS guidance
https://meassociation.org.uk/2020/1...py-and-cbt-in-draft-revision-to-cfs-guidance/

 

Article talks both about the draft guideline and Long Covd.

The whitewashing of ME just continued. Long Covid patients could be next.
https://www.thecanary.co/opinion/20...-continued-long-covid-patients-could-be-next/

 

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.

 

Looked up Dr Husain and he has some connection to the PRINCE trial. (haven’t read his evidence yet).

https://www.slam.nhs.uk/national-services/our-experts/dr-muj-husain/

 

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.

 

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.

 

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.

 

Didn't NICE, or might have been DOH, acknowledge that ME is classified as a neurological illness?
So why is 'Chronic fatigue syndrome' (note this will also have to change to ME/CFS) listed as a 'stand -alone' and not under Neurological conditions on the NICE website?

https://www.nice.org.uk/guidance/conditions-and-diseases/neurological-conditions

 

Very Good Point!!

 

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