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

Email from NICE.

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

 

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.

 

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

 

Done.

 

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

 

Should we be seeking out professionals to apply for the committee? Anyone got connections suited to this?

 

Could someone post the 12 questions from the survey here? Might make it easier for some to look things up/sort out answers first.

 

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)

 

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.

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.

 

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.

 

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.

 

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.

 

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.