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

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Sly Saint said:
is it only me finding this layout really complicated to navigate?
why are all the sections prefixed with 1.?

It would be much easier if they were just numbered without the initial 1. ie. 1,2,3,........15
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Do you mean on the Guideline itself, or on our forum threads? We simply used the numbers as on the guideline for the thread titles.

Sly Saint said:
I've had a look at some of the discussion threads and I suspect that posts might be ending up in the wrong ones.
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If anyone thinks a post is on the wrong thread, please use the 'contact moderators' button so moderators can move it.
 
Andy said:
Oh bless, looks like Phil has managed to read a bit further and found out the bad news, for him, of LP being advised against - he's now deleted his tweet. :laugh:
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So he has, funny that.....

And in the last 24 hours, instead he's posted two LP/CFS success stories, I guess he needs to bring in more clients before the news gets out to the wider world that the NICE draft has proscribed LP for ME.

I just checked on Wessely, Gerada and SHarpes twitter pages and still no mention of NICE draft.
 
I would imagine they are 'having a word' with various people, so that when they do pipe up the ground has already been prepared in a way they like.

So that they can be seen as agreeing, with someone else who doesn't like the draft, rather than instigating.

Standard BPS cover your own arse first operating procedure.
(SBPSCYOAFOP)

I'm sure with a few more words that could be made into a devastatingly apt acronym.
 
Shinygleamy said:
Is there any mention of having consultant based care? I have a gastroenterologist for my gastroparesis. A neurologist for my spinal fluid leak, I would like a consultant for the m.e. (just like m.s. or arthritis folks have). I don't want a multi-disciplinary team made up of wishy washy therapies. If you have a consultant who specialises in m.e. they very quickly develop knowledge from seeing lots of patients with the same condition. GPs aren't suitable as your main care giver because of time constraints and lack of specialism, they will never see enough m.e. patients to develop a deep knowledge of m.e.
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Non-doctors generally can’t prescribe many if any medications or request tests. They are a way for a system to manage costs.
 
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I’ve just read @Jonathan Edwards ’s expert testimony (https://www.nice.org.uk/guidance/GID-NG10091/documents/supporting-documentation-3). It is absolutely brilliant, and a devastating critique of the CBT/GET models of ME/CFS.

Some highlights and comments:
“If results are unreliable, they cannot be considered reliable just because it is difficult to get more reliable ones.”
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This is an important point which Jo also made in his letter to Fiona Watt in 2018, although it appeared to fall on deaf ears.

I was particularly impressed with the section on ethics, which I hope will be read by those responsible for giving ethical approval to future trials:
Ethical Difficulties:

The above considerations imply that, in addition to efficacy and safety concerns, there are specific ethical difficulties both with trials and service provision of CBT and GET.

Patients are entitled to be fully informed, based on reliable evidence. As I understand it, patients receiving CBT are not told that the explanation given for the illness is speculative, that there is no reliable evidence for the efficacy of the treatment or that objective measurements and long-term follow-up suggests there is none of consequence. Convincing the patient that the explanation of the illness is correct, and that the treatment is effective, appear to be inherent to the way CBT is supposed to work. It would therefore appear to be unethical to continue development and use of CBT based on the current approach of altering beliefs about e.g. disease causation or effects of exercise.

GET is justified on the basis that inducing a positive change in perceptions of ability to tolerate exertion indicates a genuine physiological improvement. However, a large number of patients have reported a seriously negative change in perceived ability to tolerate exertion after GET in routine practice (see Kindlon, 2017). To be consistent, this must equally be considered a genuine deterioration in physiological status. Moreover, it is plausibly attributable to GET, since the perception relates directly to the experience of GET. It is not justified to regard improvement in reported status as a valid index but deterioration as not. (‘Biopsychosocial’ theorists are not in a position to deny harm on the grounds that worsening is ‘just psychological’.) Although the use of GET is based on a hypothetical desensitisation of patients to adverse symptoms following exertion it would be equally plausible to expect hypersensitisation, so there is no theoretical reason for ignoring reports of deterioration. On a biopsychosocial model that gives attitudes a key role in determining health status, significant negative change seems, if anything, to be a particularly plausible outcome.

As I understand things, the prima facie evidence is that, on the criteria used as outcome indicators in these studies, significant numbers of patients may be harmed by GET. In this context, I think it would be unethical to continue the development and use of GET.
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This was new to me (but not surprising):
“Peer review problems were highlighted to me with a manuscript of my own. It was recommended that I not mention problems with unblinded trials, not because my critique was wrong but because it would cast doubt on almost all treatment studies in clinical psychology. One referee asked specifically for removal of such comments. Something is badly wrong; the disciplines involved need to take a long hard look at their standards of evidence. The broader context of this is well described in Hughes’s ‘Psychology in Crisis’ (2018)”
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My hope is that the new Guideline will lead to wider recognition of the problems of research in psychological medicine and non-pharmaceutical interventions that go far beyond ME/CFS.

As well as the issues Jo raises, I also hope that alarm bells will be raised about how on earth these therapies became standard “treatments” long before there was even any unreliable evidence to support their use. Back in 1989 the redacted professor was suggesting the patients should be subjected to GET before they could be classified as disabled for the purposes of sickness benefits.


Under “Implications for Recommendations” (my bold):
“There is, however, a need for a service for patients to provide long-term support and diagnostic review. Until we have reliable information on specific modalities it seems that will need to be pragmatic, relying on empathy, realistic prognostic information and careful clinical assessment at regular intervals. My impression is that much more emphasis is needed on ongoing support, rather than the use of short treatment courses. Perhaps the greatest missed opportunity of trials focussing on stereotyped treatment modalities is a failure to recognise the value of support from experienced carers that simply aims to make life easier to cope with, rather than address a theoretical model.”

...

“I have no doubt that professionals are committed to doing the best possible for patients but if ME/CFS management strategy is going to progress there is a need for a clean break from methods that lack sound supporting evidence and raise concerns about harm. Management needs to be dissociated from unproven models and the ethical problems they bring with them.”
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This whole section is so important and exactly expresses my view.

I am lucky to have a kind GP who get on well with and who seems to understand how I am and who I am beneath my illness. A while back when I was really struggling to cope she arranged for me to have some psychological support at home (either in person or by phone) from a counsellor, who, as it happened, also specialised in CBT. She was not unkind, and my GP had specifically told her not to give me CBT, but it was clear to me that she would have liked to, and it very quickly became apparent to me that she wasn’t not going to be much help. I didn’t connect with her on an intellectual or personal level, she didn’t seem to have any understanding my illness beyond what I told her, and she didn’t seem to have anything very useful to say to me.

After I had stopped having the sessions, I explained to my GP that they had not been very helpful, and she appeared to understand. “To be honest,” I told her, “it would be much more useful to be able to spend the same time talking to you.”

“But I don’t have any training in counselling or therapy,” she replied.

“Exactly! That’s probably why I find it helpful.”

I’m not suggesting that people can or should not be trained in counselling – the main reason why I find it helpful talking to my GP is because we get on and I respect her knowledge and intelligence. And because she is a doctor, I feel that by giving her a better understanding of how I am, she may be able to do something useful with that knowledge one day. With the counsellor and some others I have seen before I might as well have been talking to Alexa.

My reason for sharing this anecdote is really just to reiterate what Jo is saying – if we accept that there are currently no effective treatments, then we need need to rely on basic human qualities of kindness, compassion and practical needs rather than bull***t therapies.

Returning to the draft Guideline, it makes me wonder if we should request that those who are responsible for developing and promoting the therapies which NICE is now warning against should no longer be involved with providing ME/CFS services. As Jo has explained, these therapies and the studies which have been used to justify them are ineffective, unethical and harmful. If NICE accepts this, should those responsible for such mistreatment not be explicitly excluded from providing services to people with ME/CFS in future? Are those who have misled patients about the effectiveness and safety of CBT and GET capable of giving the sort of care that is needed – in some cases to the same patients? I’m not suggesting that all the physios and OTs should be excluded but I don’t see how those at the top who are responsible for the services can be allowed to continue running services – particularly those who continue to insisted that CBT and GET are effective treatments for ME/CFS.

Finally, a suggestion to Jo. Now that you have put all this evidence together for NICE, might you consider doing a series of Zoom lectures – principally for medics and those with professional interests in the issues – which could be recorded and uploaded to YouTube? It might be a good way to publicise these serious and important issues beyond the ME/CFS bubbles.

And finally, finally. Sincere thanks for all the work you have done on this, Jo. Unlike most of us, you have no personal reasons for being involved in all this, and I am not at all confident we would have got this far without your input.

[edited typos for clarity]
 
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Wonko said:
I would imagine they are 'having a word' with various people, so that when they do pipe up the ground has already been prepared in a way they like.

So that they can be seen as agreeing, with someone else who doesn't like the draft, rather than instigating.

Standard BPS cover your own arse first operating procedure.
(SBPSCYOAFOP)

I'm sure with a few more words that could be made into a devastatingly apt acronym.
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Yes they have all gone silent in Norway as well, obviously they are having some sort of victimized preperation
 
I don’t know where to put this but:

Why can’t we just not have CBT anymore? Why is CBT and psychological therapy still playing such a huge role in our care (or even the main role, with a little bit of input with OT physio).

Why can’t we see a doctor - one main doctor who will oversee our care and be an ME/CFS specialist, who can advocate for us and help us talking about our exertion and come up with a plan. And see a specialist nurse in between, the way they do at the Lupus Clinic, to discuss our care plans. We just need specialists nurses, doctors to do home visits & discuss our illness and exertion and refer us on for other help if needed, then OTs & physios to help us at home and if we need any extra specific help that they can provide. Why can’t we have that. that is what I need. :(
 
Jonathan Edwards said:
In many ways I see us coming back to the discussions I had with a number of people now here about damage limitation for ME services. There is a strong argument for disbanding all the multidisciplinary teams providing management with no evidence base but then there would be little chance of rebuilding a service or getting any blood samples for research.
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There is the biobank now where blood samples can be efficiently obtained.

I'm not sure that the clinics in England have facilitated much biomedical research in the last 15 years. They have facilitated some biopsychosocial research.
 
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Ravn said:
Just had a look at the list of stakeholders. Quite entertaining. I suspect the British Association of Sports Rehabilitators & Trainers and the Faculty of Homeopathy won't be too happy about the draft.
Mysteriously the Ministry of Defence is also on the list. We really must be scaring the establishment :emoji_scream:

More seriously though, I wonder which of those stakeholders will be making submissions, and what sort of arguments are they likely to make?

https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list-2
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When I enquired about this in the past (for another guideline) via the British Psychological Society I was informed that lots of large organisations and government bodies are included automatically on the stakeholder list and that many have no intention to respond - unless they see something they don't realty like :-)
 
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