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

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Esther12 said:
Was just looking at the thread on 'recommendations for research' and was surprised people weren't more critical. To me, that seemed like the worst section and something that was likely to lead on to future problems. Who do we think would be doing that research? To me, that looked likely to be a disaster zone.
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Would this have any impact? Given it's not NICE's remit. Especially as it can pretty much summed up as just do the damn work, basically everything's to be done, it's more of a gesticulating wildly thing.
 
#MEAction

Goodbye to graded exercise therapy but concerns about physical activity programmes – Community Discussion
Discussions highlighted that people welcomed the withdrawal of graded exercise therapy and clear warnings about the danger of increasing activity for people with ME. As in the first community call, it was clear that the education of professionals will be critical if the guidelines are to be understood and implemented. We also discussed the criteria selected to diagnose ME/CFS and the suitability of the four point scale from mild to very severe to assess the severity of ME/CFS.
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https://www.meaction.net/2020/11/30...cal-activity-programmes-community-discussion/
 
Action for ME tweet
We’ve now received over 1,200 responses from you to our survey on the draft NICE guideline. Thank you for your thoughts which help inform our response to NICE. The survey is open until 14 Dec so, if you haven’t already, please consider responding today. surveymonkey.co.uk/r/NICE-MECFS
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And for those who are members of Action for ME and receive their newsletter, there are paper versions of their questionnaire included in it that can be filled in and sent to them.
 
Forward ME call on England's Department of Health for a caution "against graded exercise ‘therapy’".
People with myalgic encephalomyelitis continue to be at risk of following damaging advice provided by the NHS. This risk is fostered by core recommendations of Clinical Guideline 53 (relevant extracts enclosed); notably, advice to undertake graded exercise, whether with or without a cognitive component - i.e. CBT in the form of graded exercise, with patient ‘education’ as to why this is deemed suitable. Recommendation 1.9.3.1 on severely affected patients is also of concern in this regard.

As long ago as 2002 the Chief Medical Officer’s Working Group recognised that “substantial concerns exist regarding the potential for harm” in respect of graded exercise1 , and that patient reports “clearly indicate that the York review results do not reflect the full spectrum of patients’ experience2 .”

We do not consider that it is acceptable for this situation to continue unabated pending the publication of the revised guideline, presently scheduled for April 2021.

We are aware that the Health Department in Scotland has recently cautioned against graded exercise ‘therapy’ - see https://tinyurl.com/y5txhdv9 (announcement Nov 2020) and https://tinyurl.com/yyherfp5 (publication August 2020).

We call on the Department of Health to make a similar caution public now in order to help to safeguard patients in England.
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http://www.forward-me.co.uk/assets/...-Recomendations-require-a-public-caveat-1.pdf

Accessible from https://www.forward-me.co.uk/letters/

ETA: Changed "NICE" to "England's Department of Health" as eagle-eyed MEMarge had spotted my error.
 
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MeSci said:
"CBT in the form of graded exercise"?
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I think CBT is a very nebulous and malleable thing, and seems to cover a multitude of sins. CBT, by definition, is about patients coming to recognise and correct some kind of unhelpful thoughts and behaviours. And the PACE-flavoured CBT is all about convincing people they are not really ill and just need to get on with life, part of that being getting back into some nice healthy exercise again. Just need to rethink how you feel about your self and not let your silly unhelpful illness beliefs hold you back. So yes, CBT-a-la-PACE is also about exercise.
 
MeSci said:
"CBT in the form of graded exercise"?
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Well, GET is basically CBT + exercise. Same foundational idea of just ignore symptoms. Poorly worded but then again, kinda more accurate. GET is often misrepresented as just exercise. It isn't, there is a strong component of gaslighting to it that is far more significant than the exercise portion, which does not need supervision or really anything special.
 
Something Overlooked?
Well worth knowing about’: those closing words from Dr Speight seem to sum the whole thing up. So shouldn’t mast cell activation at least be mentioned in the NICE Guidelines? As it stands, it doesn’t even appear. Neither does Ehlers Danlos Syndrome/Hypermobility. Of the three commonly encountered comorbidities featured in this post, only PoTS is mentioned in the draft guidelines (as one of the symptoms which is commonly experienced by the severely affected) – along with postural hypotension (ie reduced blood pressure but without the increased heart rate) which seems to affect the majority of people with ME. The draft guidelines also contain brief notes on the management of orthostatic intolerance.
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https://spoonseeker.com/2020/12/11/something-overlooked/
 
Andy said:
Something Overlooked?

https://spoonseeker.com/2020/12/11/something-overlooked/
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No, nothing overlooked. I have spent some time searching into this as people know and there is no reliable evidence for ME/CFS being associated either with EDS or mast cell disorders. This is where the level playing field comes in. If it is hope that the guidelines will change in recognition of poor quality of evidence it would not help to raise issues based on even poorer quality evidence.

Moreover, I am quite sure that these issues haven't been 'overlooked' because Willy Weir inbound to have raised them at the committee.He certainly did at the scoping meeting. Everyone its aware of the claimed association. I think it is important that it has not made its way into the guidelines.

I would personally prefer to see focus on orthostatic intolerance rather than 'POTS', which is a very ambiguous concept and not necessarily relevant to the OI of ME/CFS.
 
strategist said:
No one is surprised:



In a way, it's an admission that they can't or won't do better clinical trials.
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Here's a google translation of the article in a journal for neurologists on Fink's reaction:
Professor shocked by NICE: Exercise helps ME patients

"I believe that the working group with the draft compromises the whole of NICE's credibility. It is a reputable and respected organization that works scientifically. But here there is no scientific evidence to reverse the guidelines to be the exact opposite of what has been recommended so far. There are large and thorough studies that document that graduated physical exercise and cognitive therapy have an effect on patients with ME or chronic fatigue syndrome. However, those studies disregard the NICE working group, as well as disregard two Cochrane studies, which clearly document an effect of graduated training and cognitive therapy , and that there are no significant side effects to treatment. ”

...

“I believe that there are some enduring perceptions that predominantly run in the rather closed ME / CFS environment, which consists of a few professionals and dominant patient associations. Here it is difficult to gain a hearing for scientific facts. It is therefore also deeply shocking to experience that an otherwise scientifically sound organization such as NICE is under such a strong influence from the ME / CFS environment, which represents only a small sample of the patient group - and typically those who do not is in treatment. The many patients we have helped have a hard time getting wording. The consequences of the recommendations to support patients in being passive are frightening, especially among children. The way in which the draft guidelines deal with the research results is on the verge of manipulation, and I completely do not understand why NICE will agree to this. ”

Per Fink states that the Department of Functional Disorders at Aarhus University Hospital will object to the proposal from NICE.
 
There were more articles on NICE in the journal for neurologists

NICE vil fjerne anbefaling af træning til ME-patienter
google translation: NICE will remove recommendation of exercise for ME patients

With the last change, it is clearly emphasized that one chooses not to offer cognitive therapy because it is not a question of the patients having an abnormal understanding of the disease, and thus it is recognized that the triggering factors of the disease are biological.

The exact reason why some people develop ME is not yet known, nor has a treatment been found that can make all patients healthy. Internationally, there has been fierce disagreement about whether ME is a disease rooted in biological disorders - or whether it is a disorder that is rooted in patients' own understanding of the disease, and in Denmark, as in many other countries, two camps have formed. : patients and individual professionals, on the one hand, who believe that the disease has purely physical causes, and on the other hand, the majority of professionals who believe that the disease is multifactorial and that both biological, psychological and social factors can play a role.

Among neurologists, there is - as can be read from a letter from the Neurological Society to the Ministry of Health and the Elderly from February 2020 - broad agreement that the cause of ME is multifactorial.

ME-forening: Danske myndigheder bør lægge sig i kølvandet på NICE
google translation: ME Association: Danish authorities should get in line with NICE

Cathrine Engsig points out that at centers for functional disorders in Denmark it has never been possible to present evidence of the effect of the treatment with graduated training and cognitive therapy for patients diagnosed according to updated diagnostic criteria (ICC / CCC):

"Patients, on the other hand, tell us that they are discontinuing treatment because they experience worsening of PEM (post exertional malaise or exertional exacerbation of symptoms), pain, fatigue, dizziness, which are some of the symptoms that characterize the disease."

According to Cathrine Engsig, the new draft from NICE is based on a thorough and scientific review of the studies on which the treatment is currently based:

“NICE states in their proposal that in up to 89 percent of the studies there is only low evidence for the effect of graduated training and cognitive therapy. NICE is a scientifically based and interdisciplinary body that we in Denmark lean on - and we are quite sure that they do not propose a change in the guidelines, because some patient associations are shouting behind the scenes, but because the existing evidence is simply too little. ”
 
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