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

The part I have read is very good, up to this:

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:

"as appropriate ) to find ways"

"will be spending time in a nursing home"

"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:

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.

 

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.

 

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.

 

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.