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The draft NICE guideline.

Given the never ending stream of such papers that seem to be emitting from these BPS folk for ME/CFS, presumably there will be ones still in the pipeline even after next April.

My bold :).

Quite. No point labouring the point too much to them about how many gigantic cans of worms they will be opening if this guideline goes through as we hope it will. I know they will have a good inkling, but no point making it more obvious until past the point of no return.

But do we ever get to honestly hear the counterpart to that, the people who were not helped or were made worse by it, but dismissed as simply not following the "expert" advice?

Got it, point taken :).

Is there a risk that by pushing too hard for such things before the guideline is formally published and set in stone, then we might provoke more powerful lobbying against it in the political corridors of power, for them to exert political pressure - it would be the last thing we would want to...

Yes, could suggest the BPS crew add the following tag line to all of their papers: "Science is whatever you want it to be".

This is an example of what I was thinking of, though I'm pretty sure he made the same assertion at other times also:

Yes, it's why one of the PACE authors (Sharpe I think) argued vehemently that it was CFS they studied not ME.

Yes I fully agree with this. Severity levels are a broad brush description, but necessary. For many people and groups it is important to appreciate the full range of disability levels that ME/CFS can incur. They are only going to listen and digest if it is kept simple for them - a full...

Fully agree. Somewhere else in these threads (sorry, lost the plot where) I've said that the guideline should make very clear that whenever it refers to ME/CFS therapists/experts, it should very clearly state that those therapists must be fully conversant with, full trained in accordance with...

To my engineering brain this just feels like common sense. For any one person, each kind of activity (using that word loosely) will have a given energy limit at any given time. If you could do a multi-dimensional graph, one dimension for each activity, with the limit of each activity marked...

Not sure if relevant to this guideline, feels like it should be somewhere, maybe in the glossary section for Mild ME/CFS. Often overlooked when considering the feasibility of continuing work. It is not just about what a person can do, but the unpredictability of what they can and cannot do and...

Has anyone seen any mention of indigestion as a symptom of ME/CFS? I believe it is common, and can be triggered by trivial things.

Absolutely. As I've said before, in something like aircraft safety, the level of evidence required to ground an aircraft because of safety concerns, is considerably less than the level of evidence needed to allow it to fly again. Many more people would be harmed if those two thresholds were both...

In this case they seem to have left their movement ready prepared in its own paper ;).

Exactly. If they really had the integrity they pretend to show now, then they would how spoken out for what is right long before now.

No Sarah it is not unkind, just a question that needed to be asked.

Yet the therapists still push treatments founded on theories they believe are irrelevant. Weird. Let's hope this guideline makes it through in a form that will shake things up a bit.