Member comments wanted: First section (Why the guideline is needed) of the NICE ME/CFS guidelines draft scope

This sounds a bit like ME/CFS is a wastebucket diagnosis - something some doctors told me, and I disagreed. But here it is.
And there are clinical criteria for ME and CFS. There is no biomarker. There are markers that could underline a diagnosis.
Actually, this sentence is puzzling.

Argh. I cannot agree - others obviously too.

I agree. This was my spontaneous thought, too.

Although these can be symptoms, I don't feel this is a correct characterization. Can't they use ICC or CCC to characterize ME correctly? ME has a clear formulated set of symptoms (plus individual symptoms) - this sounds non-telling.

 

Regarding characterised by fatigue, this is how AFME are describing it and they also wrote the parliamentary briefing bit that also copied their description. I'm very ill and haven't been able to really grasp this whole process but am getting concerned at what NICEs objectives might be, i.e. just a tweaking of the status quo versus what patients want and who in the stakeholders list will actually be advocating what patients want. I'm pleased to see #MEAction open in their criticisms but I'm not sure how much of a radical change MEA & AFME will ask for beyond GET modifications and who else are contributing. I'm obviously grateful people are doing this all on our behalf but seeing that stakeholders like the RCGPs were arguing that the current guidelines were TOO medical and not BPS enough, plus the debates around diagnosis and size of net, fatigue vs ME I'm uneasy.
Are 25% and TYMES submitting , what happens when people send in criticisms of the drafts, are NICE obliged to listen to patients over other SH, say we don't like the next draft? I'm glad and grateful S4ME will be submitting thoughts thank you.

 

Yes, fatigue misleading
Significantly reduced physical and mental stamina?

 

Agreed