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

I appreciate there are some things that cannot be said here ... but what a year 2020 has been! Both worldwide and particularly in the UK, especially for pwME. New NICE guideline being a major part of that.

 

What happens with the new NICE guidelines get produced? Do GPs get a notification about it and get told to read it, or will they get a training session on it? What about hospital workers, NHS etc? Does anyone know the processes involved.

 

It's taken me a while to get my head around the Draft Guideline and I'm too late to contribute here sorry. Thank you to everyone who has worked on the S4ME Submission. The Draft looks like something written by a group of people with conflicting interests and priorities. The Patient Reps have obviously worked hard to get our points of interest across.

My concern is that although there are sections proscribing exercise programs they will still exist under the sections on "energy management". It appears that the Guideline Development Group members who are currently involved in clinics or services want to be able to offer what was Adaptive Pacing Therapy (one arm of the PACE trial) as a way of managing energy.

Parts of the Draft Guideline are very similar to the PACE training manuals for APT. We may have lost GET but it's close cousin is still with us. I think that graded exercise will still be what is offered under this guise.

The current CFS Clinic staff (and anyone offering this privately) have essentially created 2 diseases in the Draft Guideline and a target audience of the "mild and moderate" patients. This will be the group that they think is most amenable to APT. The current clinics have never had an interest in severely affected patients. They can't get to them anyway.

The "mild and moderate" patients have been corralled off by the Diagnostic criteria used. They are obviously not worried about post exertional symptoms being included for this group. They think APT can accommodate this.

The "two different diseases" has been created by the Mild and Moderate patients being diagnosed by the criteria in one section and then the section with common ME symptoms being seperated into "severe and very severe".

The mistake being made (and is it deliberate?) is that all ME patients can suffer from 10/20/30 different symptoms. The difference between mild, moderate and severe is not always the number of symptoms but the severity. Someone with severe ME can be severely disabled by one or two symptoms. Someone with Mild ME can be severely affected when they have PEM.

As my health changes over decades and I find myself going between mild, moderate and severe I can sometimes find i have more symptoms at one time but it is primarily the strength and severity of the same symptoms that makes me move into a new category. I can move between categories having both different symptoms and a different severity of symptoms during a day.

When my ME was at it's mildest I have many of the symptoms the NICE draft Guideline class as "severe or very severe". When I am severely affected it is these symptoms that intensify and cause greater consequences.

The severely affected suffer from a consequence of the severity of their symptoms. Weakness could make it impossible to stand up. Digestion and weakness impossible to eat and digest. Being in bed leads to pressure sores.

So we end up with this current draft Guideline taking away from Mild and Moderate patients some of the things that may well be the most disabling for them and needing treatment.

 

In the light of recent events etc, e learning gems ( withdrawn) etc etc, best we keep our eyes on the ball……
So, FYI, related to 2007 NICE RCGP’s and New NICE and GPs……
https://rcgp-news.com/49LXZ6S4-5E5347081270F2374Q1XVDC4E2FEA9E06EC1C3/cr.aspx

'A fresh approach to general practice..’
So, in light off the above and the need for any new NICE Guidance to reach it’s targets, and be delivered, ….. we all need to know about mechanisms (and hurdles and barriers) likely to be are involved.

I think this is where my personal focus will be on any responses I write to NICE consultation. A reality check and life at the coalface?? Our personal understanding experiences. Policy into practice? Comments please asap!


DESPICABLE MUS: Document Leads UK Healthcare Commissioners up a Perilous Garden Path. https://opposingmega.wordpress.com/...care-commissioners-up-a-perilous-garden-path/

‘In my last few posts, one influential document – the Joint Commissioning Panel for Mental Health (JCPMH) ‘Guidance for commissioners of services for people with Medically Unexplained Symptoms’ ¹ – repeatedly came up for providing dangerously misleading information to UK healthcare commissioners. I now want to recap on these issues and highlight some additional problems with that guidance in the context of the risk that it poses to patients with so-called medically unexplained symptoms or ‘MUS’.
The JCPMH guidance document on ‘MUS’ was published in February 2017 and was jointly funded by the Royal College of Psychiatrists (RCPsych) and the Royal College of General Practitioners (RCGP). The Joint Commissioning Panel for Mental Health (JCPMH) is a collaboration of 17 UK organizations, co-chaired by the RCPsych and the RCGP, that has developed numerous guidance documents for commissioners on different subject areas (see here ²). Although one of those organizations is the Department of Health and Social Care or ‘DHSC’ (previously the Department of Health or ‘DOH’), it appears from the answer to a 2017 parliamentary question ³ that the Department of Health was not ‘closely involved’ with the development or production of the guidance on MUS, or at least the Parliamentary Under Secretary of State at the DOH at the time, Lord O’Shaughnessy, seemed to think that it wasn’t.

We should not underestimate the role that commissioners play in determining how NHS money is spent in England. In 2018/19, commissioners, as part of clinical commissioning groups (CCGs) across England, were responsible for spending around 75% of the NHS’s £112.7 billion budget, (see here ⁴). Most of the rest was spent by ‘NHS England’, the executive body that oversees the NHS and CCGs and that allocates the money to the CCGs.

Few people in England appear to be aware of the massive changes to the NHS that resulted from the Health and Social Care Act of 2012 and that gave rise to the CCGs. Brought in under the Conservative/LibDem Coalition government, this Act allowed an abdication of responsibility for healthcare to non-departmental/‘independent’/‘arm’s length’ bodies with a “not me, guv” government approach to healthcare decisions that has perhaps become more noticeable in the recent covid-19 crisis.

 

It’s a good point. I did notice there were symptoms in the severe section that were actually common to all patients. One worry I have though (not directed at you at all, just something I’ve been thinking about when other mild/moderate patients have mentioned it), is that I wouldn’t want the guidelines to change to say “These are ME/CFS symptoms but severe and very severe patients have a greater intensity of symptoms and are more disabled by them”.

Because while that’s true...and I’m trying to say this as sensitively as possible, because I know any form of ME is extremely disabling, however mild, and then when mild/moderate there’s the added stress of having to often look after yourself as people don’t realise how ill you are and how little you can do compared to the normal population, and what PEM is etc. But I don’t think it’s about the same symptoms but just milder intensity. With severe and very severe ME, my experience is I started to get increasing severity of symptoms almost on an exponential scale from moderate, with new frightening symptoms being added...and the ones that did increase, the severity was so bad it almost seemed like new symptoms. When I was moderate/ maybe severe, in a wheelchair, walking 10 mins once or twice a week, sitting up 4 hours a day, yes had symptoms and yes needed care constantly and was very ill but was able to socialise a bit, get out the house, have a bath, live a life, went to sewing classes even though I got super tired, watched TV in living room for quite some time. Then, I went to severe, could not tolerate movement as much, even movement in a wheelchair starts to gets hard, and being in a cab someone else is driving, even fully reclined feels like some kind of torture...now severe/very severe, looking into people’s eyes are extremely painful, do not want to look at people moving around, movement even in a fully reclined wheelchair becomes extremely hard, sound and light feels like torture and seconds of bright light is enough, I do not want to interact with people at all etc except mum/boyfriend and even that is very hard.

I agree that some of the symptoms are shared by milder patients. There are some symptoms though eg sound and light sensitivity, difficulty sitting up where the impact seems to grow almost exponentially and where it becomes so marked, in a way you might not expect. Things like more severe gut issues, swallowing problems or difficulty eating, pain when chewing and swallowing issues for example for me gets exponentially worse the more ill I become. At my worst the pain on chewing was so bad i had to only have liquids and even moving my mouth to do that became so hard which is why I lost so much weight following the trial. So it’s not just about a scale of severity (when I think of mild, moderate, severe very severe, it makes it seem linear. But I think it’s not).

I’m not sure exactly what I’m trying to say but think it’s important to recognise there are specifics symptoms associated with severe/very severe ME, eg if I attempted to go to hospital, I would want everyone to know: this person had very very bad sound and light sensitivity, needs complete dark and quiet, movement sensitivity so even moving her in a wheelchair is hard, can’t interact socially, don’t force me to look at someone’s eyes as it gives me pain, talking becomes impossible or causes severe PEM, sitting up is intolerable (and not necessarily just due to weakness I don’t think), chewing becomes impossible sometimes. These seem very different from many mild/moderate patients. This shouldn’t get diluted down which can happen if we just say severe / very severe patients just have more severe symptoms, and these symptoms affect everyone.

 

I think in a way you are qualifying what I was trying to say and it really helps me to have this interaction to sort it out in my head

"I’m not sure exactly what I’m trying to say but think it’s important to recognise there are specifics symptoms associated with severe/very severe ME, eg if I attempted to go to hospital, I would want everyone to know: this person had very very bad sound and light sensitivity, needs complete dark and quiet, movement sensitivity so even moving her in a wheelchair is hard, can’t interact socially, don’t force me to look at someone’s eyes as it gives me pain, talking becomes impossible or causes severe PEM, sitting up is intolerable (and not necessarily just due to weakness I don’t think), chewing becomes impossible sometimes. These seem very different from many mild/moderate patients. This shouldn’t get diluted down which can happen if we just say severe / very severe patients just have more severe symptoms, and these symptoms affect everyone.£

I had all of these symptoms as a mildly affected person with ME when I could work at times. If you break them down they are the same to me but it is the intensity that is different. I could be wrong and am happy to be corrected. I think we need a section on "severe and very severe" but the current one needs to include mild and moderate people who have these symptoms - even if it "only" in PEM .

Sound and light sensitivity - for me had in mild moderate and severe. One of my worst problems in "mild"
Can't interact socially - ditto. When working no (whatever it is) left over to chat to colleagues at work, go to lunch with them or drinks after work
Movement sensitivity - even when I was mild and could work I was limited to modes of transport getting there. Could not bear the movement in buses and trains at times. Could not drive. Sitting in a wheelchair still the same

Chewing - yes even as mild

Talking - yes even as mild

Not sure about looking into eyes need more info. Focussing on a face for me I had when mild. It was painful

All the things you list could be the extra weakness or in the case of sitting up POTS (which I have had since a teenager) or PEM.

Not only do severe suffers have intensified symptoms, they have horrible complications of these in addition. Being unable to digest leads to tube feeding. There can be Muscle wasting, contratures (spelling?).

If you can tell me what symptoms severely affected people have that are unique when can then help put that into any responses to the draft guideline submissions that may still be open for new content? I don't feel my own experience is enough to think of these.

 

A piece in the Scottish Sunday Express copied from the ME Action website.

 

Hi I haven’t read through the whole thread and haven’t been following, sorry if it’s been asked, could someone let me know: to make an individual submission to NICE - not going point by point over the guidelines - but just general comments and experiences that you want to be taken into account,

what is the very latest deadline for that please and how do I submit comments / how long is it supposed to be etc.

 

Deadline: 5pm on 22/12/20
Details here, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-2

There is a link at that webpage to the submission form.

I can't really help more than that as I've not been involved in the process and enormous amount of work that our team have done and are doing.

 

Forgive me if this has already been flagged up, but I thought it might be useful for you to use and quote?

https://www.mdpi.com/2075-4418/9/4/124/htm

Open AccessReview
Work Rehabilitation and Medical Retirement for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients. A Review and Appraisal of Diagnostic Strategies

by Mark Vink 1,*OrcID and Friso Vink-Niese 2
1
Family and Insurance Physician, 1096 HZ Amsterdam, The Netherlands
2
Independent Researcher, 49032 Osnabrück, Germany
*
Author to whom correspondence should be addressed.
Diagnostics 2019, 9(4), 124; https://doi.org/10.3390/diagnostics9040124
Received: 7 June 2019 / Revised: 11 September 2019 / Accepted: 13 September 2019 / Published: 20 September 2019
(This article belongs to the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS)

"Cognitive behavioural therapy and graded exercise therapy do not restore the ability to work."


"However, there is one thing that occupational health physicians and other doctors can do to try and prevent chronic and severe incapacity in the absence of effective treatments. Patients who are given a period of enforced rest from the onset, have the best prognosis. Moreover, those who work or go back to work should not be forced to do more than they can to try and prevent relapses, long-term sick leave and medical retirement."
_._,_._,_

 

Could be useful as it is a new publication? Contains the Vink Vink-Neise paper as well.

https://www.mdpi.com/books/pdfview/book/2100

Sciprofile link Brett Lidbury and
Paul Fisher
(Eds.)
Pages: 202
Published: March 2020
(This book is a printed edition of the Special Issue Biomedical Insights that Inform the Diagnosis of ME/CFS that was published in Diagnostics)
Download PDF

 

NICE finally moves to stop recommending exercise for chronic “fatigue”

https://www.painscience.com/microbl...ecommending-exercise-for-chronic-fatigue.html

 

In this NICE guideline review, could someone point me to the section that provides the evidence for severe / very severe patients struggling to access care because of sensitivities, lack of accommodations etc and sometimes not even accessing care? I’m sure something about that was written in the draft guidelines, that there’s evidence about it. I can’t find it.

https://www.nice.org.uk/guidance/GID-NG10091/documents/evidence-review-3

Would be very grateful!

 

Really struggling with a response and am very grateful to SM4and others for all their collective efforts.

FYI I contacted NICE and requested a discretionary informal 2 week extension to the 5th January due to personal and other extenuating circumstances.

Was told that was not an unreasonable request due to staff at NICE? RCP being being off until 4th Jan.

I was then refused any discretion (even though I suggested NICE are in breach of Government Compact in consultations anyway and could be challenged.)
(I reminded NICE that I successfully drew this to their attention and challenged in July 2017 the same issue and they had to extend- not much, but a bit).

They updated the NICE Manual ('all consultations are 6 weeks') subsequently, but failed to address this point. ( 6 weeks unless they say otherwise.....Covid!!?? )

I rang RCP on Friday to ask to speak with Kate Ashmore/Kate Kelly to see if I could get some discretion from RCP.

They were unavailable and I was told by the switchboard it was no point in me ringing after Friday - that as of 18th RCP staff are being furloughed (until at least 4th Jan) with only a few skeleton staff maintaining contacts/working!
My request should have been a suitable arrangement for disability (under DDA) bearing in mind NICE are in breach of Governement guidance for timescales for consultation anyway.

Just saying and pondering what I should do as I cannot do justice to a fulsome response on behalf of our group in the current time frame.
Options;

• Bang in a very rough and ready with a corrected one later?
• Not bother as it would be worse than doing nothing to do a rushed job
• Put in a response from us by deadline but erroneously fail to attach response file .......
• Comments/advice welcome

 

Just one brief thing prompted by Crawleys new proposed trial on ACT;
although CBT is gone into at great length in the new guideline, saying that it is not a cure, or treatment for ME/CFS, is there anywhere that it says that this applies to all psychotherapy? Or is it going to be OK for clinics, researchers, to use other psychotherapies (eg ACT or whatever else they come up with).