4-page summary of the 2021 NICE ME/CFS guidelines

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Tom Kindlon

Senior Member (Voting Rights)
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That is a fantastic resource, it covers everything important and gets it all absolutely right. Length is perfect and the need-to-knows come first.

The cherry on top would be to have it on an NHS website rather than an AWS instance, conferring official status on a document that should be every clinician or occupational health professional’s go-to cribsheet.

Is that in Nina Muirhead’s gift? Is it in the gift of anyone whom anyone here knows? NHS England would be ideal, but it would still be valuable to have this on the website of a regional commissioner or even an acute trust. Is there any chance of NICE agreeing that their work has been elegantly summarised and adopting and hosting it, or would the politics be unworkable?
 
The part I have read is very good, up to this:

POTS patients who meet CFS criteria were found to have a similar clinical, autonomic and neurohumoral profile to other POTS patients (Okamoto et al. 2012 Pubmed ID 21906029). Because there were no distinguishing fea- tures between POTS patients with and those without CFS, the researchers propose that CFS–POTS is not a separate clinical entity distinct from POTS without CFS. Rather, CFS seems to be part of the spectrum of POTS, associated with greater sympathetic activation and/or a more severe form of this condition.
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It is presented in italics, which is said to mean it is a comment. I don't recall anything like that being covered in the guideline. I would remove it, as it just adds confusion.

It talks about CFS, rather than ME/CFS, without any previous introduction of the CFS term. Readers new to the topic won't know if the 'CFS' is the same as ME/CFS, or if it is something different. It seems to be suggesting that people with POTS with CFS are the same as people with POTS without CFS. It suggests that CFS is just a subset of POTS - but not everyone with ME/CFS has POTS. And it suggests that people with CFS have a higher level of sympathetic activation than people with POTS and no CFS.
 
Some minor typos:
Gastrointestinal problems may include nausea, inconti- nence, constipation, bloating and difficulty swallowing. Pro- fessionals should work with the person and their carers (as appropriate) find ways of minimising complications caused by gastrointestinal symptoms, or by difficulties with buying, preparing or eating food. (1.2.20)
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"as appropriate ) to find ways"

The guidance provided in this regard would also be relevant when a person with severe ME/CFS will be spending time at a care of nursing home, for example for family carer respite or to avoid exposure to noise from work being undertak- en at or near their home.
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"will be spending time in a nursing home"

Professionals should discuss in advance with people who need inpatient or outpatient care whether any aspects of where care will be provided could cause problems for them, including:
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"any aspects of their care"

I've read it all now. It is very good. The 4-page format with content on things like gastrointestinal disturbances, possible inability to chew and the need to be proactive about keeping people with severe ME/CFS well-nourished could really make a difference.



I think the one thing that could be added is more explanation about energy management. Here's the relevant section about energy management:
Principles of management flow from the relationship between symptoms and activity. Inappropriate energy management can lead to lasting deterioration, so the right approach is crucial at all times.

From the time that ME/CFS is first suspected, professionals should advise patients not to use more energy than they perceive they have and to rest and convalesce as needed. Managing symptoms early may prevent them from getting worse and the person's health deteriorating. (1.3.1; Ra- tionale, page 62)

Energy management is one of the most important tools that people with ME/CFS have, but no approach to energy man- agement is curative. (1.11.2; Rationale, page 70)

Energy management is not a physical activity or exercise programme. Nonetheless, there is potential for harm through energy management being wrongly applied to peo- ple with ME/CFS. (Rationale, page 71)
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There's quite a lot of saying what it is not, and how inappropriate energy management can harm, but nothing really saying how it should be done. That may to some extent be a problem with the guideline, but I think there should be something there about the person with ME/CFS prioritising how to use their limited activity capacity, which may include major decisions such as reducing or stopping work or school. I think it's important to say that medical professionals can help the person with ME/CFS inform their employer or school about their needs, and can facilitate access to financial benefits - that is one of the few things that medical professionals can usefully do for people with ME/CFS. There is a box there discussing aids and adaptations for people with moderate and severe ME/CFS only, but that is not the same thing.
 
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advise patients not to use more energy than they perceive they have

Don't agree with that formulation. I think framing it as being about energy/fatigue management is a mistake. It is about symptom management. More specifically, managing the degree of symptom expression.

Should be more like:

Try to remain as active and engaged as you can without provoking or exacerbating your symptoms.
 
Sean said:
Try to remain as active and engaged as you can without provoking or exacerbating your symptoms.
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Hmm, I'm not sure about that either. All activity exacerbates my symptoms to some extent. That would mean I do nothing. And that wording encourages pushing right to the limits. Most advice I've seen from sensible sources suggests staying well below the limit that triggers PEM.

How about:
Try to keep individual activities and overall daily activity well within the level you can maintain without precipitating post exertional malaise.

But the point of this document is presumably to pick out the best and most useful bits of NICE, not to rewrite it.
 
Trish said:
But the point of this document is presumably to pick out the best and most useful bits of NICE, not to rewrite it.
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The way it is currently formulated, it is a bit of a mixture I think, of material from NICE and other material. Which could be fine if the other material works to explain a concept in line with the NICE intent. But it's a problem when it introduces completely new ideas, as I think has been done with the POTS/CFS box.
 
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