The draft scope for the NICE guideline on ME/CFS is now out for consultation, June 2018

Andy

Andy

Retired committee member
Email from NICE.
Dear Colleague,

RE: NICE guideline on Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020)

The draft scope for this NICE guideline is now out for consultation. We hope that your organisation will submit comments on the draft scope; it is a valuable opportunity to ensure that the guideline considers issues important to your members. The consultation page contains the documents, background papers and instructions on how to comment.

The consultation on this draft scope will close at 5pm on Thursday 26 July 2018.

We are also recruiting people with a practitioner, care provider or commissioner background and lay members (people using services, family members and carers, and members of the public and community or voluntary sector) to join the Committee for this guideline. You can find more information on the Committee recruitment page on our website. Please circulate this link to any colleagues or networks you think may be interested.

We have also now published our notes taken from the scoping workshop on our website.
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NICE consultation page is here, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-3 and direct link to the draft scope is https://www.nice.org.uk/guidance/GID-NG10091/documents/draft-scope-2

NICE committee recruitment page is here, https://www.nice.org.uk/Get-Involved/our-committees
 
adambeyoncelowe said:
It's interesting. Better than I expected. Still no mention of objective measures in outcomes (which I suggested on our table). The intro is much stronger and gets across the severity of the illness.
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I think the lack of objective measures in the outcomes section means that they will accept poor quality research such as PACE. Its critical that they understand this.
 
Some good, some not so good:

“...characterised by extreme and debilitating fatigue, particularly after exertion.”

Doesn’t really capture it. Fatigue is not the primary nor characterising symptom. It may be a primary symptom, along with pain, cognitive, sleep, hemodynamics.

“Clinically, ME/CFS is heterogeneous..."

It has a degree of heterogeneity in presentation. But that may just be because we don’t understand it’s complexity and its full consequences yet, not so much because of innate heterogeneity.

And no mention of PEM, nor objective outcomes.

They have not got away from the fatigue obsession. Still some work to do.
 
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The National Institute for Health and Care Excellence (NICE) have released a draft scope for its revised guideline on M.E./CFS, and are asking for applications from people affected by M.E. to be lay members on the guideline development committee. Find out more about each of these opportunities below.

Action for M.E. is a registered stakeholder in the NICE guideline process. We have been attending previous meetings with committee members to discuss how the new guideline can ensure appropriate health care for people with M.E, and want to hear your views on the draft scope.
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https://www.actionforme.org.uk/news/​nice-ask-for-input-in-the-development-of-guideline-on-mecfs/

Direct link to their survey, https://www.surveymonkey.co.uk/r/NICEscope
 
Here’s my twopeneth:

  • I think on first read it didn’t mention the WHO classification as neurological?
  • Pleased to see the recovery bit has been downplayed there is probably more to be said here?
  • The bit about preventative measures during diagnosis is good, I would like to see intervention of advice to rest and not push through given after the first screening blood tests as a precaution. They should also mention gradual onset and the dangers of symptoms becoming exacerbated due to the extended diagnosis window.
  • It’s overly weighted towards the infection triggers in my opinion and reads like this is 90% ...this could be interpreted by some GP’s that if you didn’t have an infection it’s probably not ME. This could leave nearly a third of patients at risk of a delayed diagnosis.
  • Like others I don’t like the opener about fatigue and downplaying other symptoms.
  • Perhaps highlighting diseases that have a similar symptom profile that should be discounted but also as a way of identifying a symptom profile (joint and muscle pain, cognitive difficulties (expanded to be specific) easily exhausted from everyday tasks
  • Needs more about care for the severely affected group

That’s it for the moment
 
Hi, Clare here from Action for M.E. I'm sorry about the time it's taking me to respond to questions/posts - I have had to focus on other things here in the office, but I am dedicating some time today and next week to addressing issues raised here.

ladycatlover said:
The link from AfME website to the draft guidelines stuff is the wrong link! Sheesh, and they expect ME patients to find the right link? (though it's easy to find it from MEA website)
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It seems like NICE moved the link to this (we corrected it in our story as soon as we became aware); you can now find the draft scope at https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-3

And the link to our survey about it is https://www.surveymonkey.co.uk/r/NICEscope - thank you in advance to all who take part.
 
Is there a confusion/conflation between symptoms and measures?

Just because one of the (many) symptoms of ME is bone-crushing fatigue, that does not automatically mean fatigue is the right thing to measure. It's as if there is this automatic assumption that "measuring symptom severity" is the way to go, simply because the medical profession has presumed to define ME/CFS in terms of patient-reported symptoms. Either the definitions need more objective factors included into the definitions, and/or NICE needs to see past its nose, and realise the need to measure more than just reported symptom severity, but that objective measures are also crucial.
 
Barry said:
Is there a confusion/conflation between symptoms and measures?

Just because one of the (many) symptoms of ME is bone-crushing fatigue, that does not automatically mean fatigue is the right thing to measure. It's as if there is this automatic assumption that "measuring symptom severity" is the way to go, simply because the medical profession has presumed to define ME/CFS in terms of patient-reported symptoms. Either the definitions need more objective factors included into the definitions, and/or NICE needs to see past its nose, and realise the need to measure more than just reported symptom severity, but that objective measures are also crucial.
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You are right, I had bone crushing fatigue at first, now 12y in not so much (except certain times of the day) but I do not have more energy at all, My PEM is as bad if not worst than when I used to be so tired, and the health issues get more serious with time, like at first was some symptoms and bothersome things, now I get like more serious diagnosis.
 
#MEAction’s Initial Thoughts on the Second Draft Scope
Overall we see that some stakeholder input has been taken on board, but the draft remains worryingly inaccurate and does not reflect a scientific understanding of ME, retaining many omissions. We are not satisfied that NICE will consider the full range of scientific literature and that this may result in outdated and dangerous guidelines once again.

Slightly stronger language is now used to describe ME in the opening statement (‘Why the Guideline is Needed’), though it is still not nearly accurate enough. Recognition that patients are being pressured to participate in exercise programmes that lead to a worsening of symptoms was welcomed. We are also pleased to see an increased focus on education throughout, and the removal of managing comorbid conditions from the list of what areas that will not be covered.
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https://www.meaction.net/2018/07/01/what-next-for-the-nice-guidelines/
 
Sorry if I'm being a bit naive, but given the absence of an adequate clinical guideline on ME/CFS, why haven't the charities produced their own?
Could the MEA Purple Book be seen as a suitable alternative? At the very least, if such a document existed, stakeholders could then point to it and say, "This is what we want a NICE guideline on ME/CFS to look like."

I think there is a misconception about what NICE guidance is. It is really only a description of what "best practice" is currently considered to be, and not what it should be. It can only be based on what's available. It only makes recommendations, and those recommendations are not statutory requirements. If there are better guidelines out there (such as international society guidelines), NICE will often defer to them, as long as the NHS has the capability and resources to do so.
 
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Lucibee said:
Sorry if I'm being a bit naive, but given the absence of an adequate clinical guideline on ME/CFS, why haven't the charities produced their own?
Could the MEA Purple Book be seen as a suitable alternative? At the very least, if such a document existed, stakeholders could then point to it and say, "This is what we want a NICE guideline on ME/CFS to look like."

I think there is a misconception about what NICE guidance is. It is really only a description of what "best practice" is currently considered to be, and not what it should be. It can only be based on what's available. It only makes recommendations, and those recommendations are not statutory requirements. If there are better guidelines out there (such as international society guidelines), NICE will often defer to them, as long as the NHS has the capability and resources to do so.
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I see where you are coming from, but suspect that NICE expect to see hard clinical evidence? (Despite the fact they have been fooled in the past into accepting deeply flawed pseudo-evidence). Don't really know, I'm far from expert here.
 
Lucibee said:
Sorry if I'm being a bit naive, but given the absence of an adequate clinical guideline on ME/CFS, why haven't the charities produced their own?
Could the MEA Purple Book be seen as a suitable alternative?

I think there is a misconception about what NICE guidance is. It is really only a description of what "best practice" is currently considered to be, ... It only makes recommendations, and those recommendations are not statutory requirements.
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I think we have to consider all the different viewpoints and each charity is coming from a viewpoint. AfME seem to want to defer to government recommendations. The MEA booklet has a lot of useful information but does not attempt to scrutinise the quality of evidence involved. Specialist charities tend to issue guidelines based on a consensus of a large body of advising academic physicians. The problem for ME is that there are virtually no academic physicians involved in the UK. There is no training programme where trainees might be asked about evidence in exams etc. There is nothing equivalent to the Arthritis Research campaign for instance.

NICE was specifically set up to identify the best practice that could be considered cost-effective enough to provide on the NHS. They have been pretty bad at it. Virtually all decisions on new rheumatological drugs had to be reversed because the health economic analysis was incompetent. But the NHS is a health insurance system and subscribers have a right to expect provision to be restricted to evidence based treatments. Charities do not have that constraint.

NICE recommendations are effectively statutory because commissioners are always looking for something they can deny funding for and if NICE does not recommend they can do that. The only way to get around NICE guidelines is to have local research funds available for early studies.

The task now is to get NICE to stick to their own objectives and delineate the treatments that are adequately evidence-based. That means not much but at least it means not pretending to provide treatment, when what is provided is almost certainly useless and also possibly harmful. Ironically, I see that main risk to this happening is the compromise position of 'being flexible because each person needs something different'. I have heard this both from MEA people and NICE staff. The MEA seems quite keen on anti-viral therapy. NICE staff are probably keen on keeping everyone happy and keeping CBT and GET in as options. In the end the anti-vitals will not be allowed in because there aren't even any trials. So we go back to first base.
 
Jonathan Edwards said:
The task now is to get NICE to stick to their own objectives and delineate the treatments that are adequately evidence-based.
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I see ensuring this happens as the thing we should be aiming to do. That is making sure NICE produce guidelines that follow from the evidence (although that may mean they are quite empty).

I think there is room for patient reports within the evidence base particularly where patients have reported issues with particular treatments ensuring that is known so that doctors can talk of the risks with patients and monitor for them.
 
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