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

[Inara]

This guideline scope uses the term 'ME/CFS' but this is one of a number of names that have been used to describe this illness. It is recognised that there are people who need care but who may not meet existing clinical or research criteria.

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.

ME/CFS is a disabling and distressing illness characterised by extreme and debilitating fatigue, particularly after exertion

Argh. I cannot agree - others obviously too.

The word “distressing” diminishes the impact of the preceding word “disabling” and should go.

I agree. This was my spontaneous thought, too.

Common symptoms include chronic pain, disordered sleep, digestive problems and cognitive difficulties.

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.

 

[Cinders66]

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.

 

[Breeze]

I might comment that ME/CFS is not characterized by fatigue; that it is instead an amalgam of symptoms, of which extreme fatigue can be one. Further, I would suggest its defining characteristic is PEM.

I see ME/CFS characterized as "illness" and "condition" and, arguably,"problem"

Any reason for the seeming aversion to "disease"?

 

[Breeze]

Yes, fatigue misleading
Significantly reduced physical and mental stamina?

 

[Breeze]

I too do not agree that ME is characterised by fatigue. It is characterised by extreme low stamina wirh global increase in symptoms if a person passes their individual baseline.

I also find there is very little mention of the sensory sensitivity problems in ME which like exertion have to be managed and sensory input not exceeded by the person’s individual limits.

Also is ME really heteorogenous? The post exertional exacerbation of symptoms seems universal albeit the amount of activity a person can do before symptom exacerbation varies significantly between the mild and very severe.

Also i would love to see an explanation in the Nice guidelines that GET and CBT were recommended due to the theory of deconditioning and abnormal beliefs that activity would make the person worse. However, over 10,000 research papers show there are problems across many systems and ME is not the result of deconditioning.

I am severely affected too, bedridden, and feel ill with symptoms 24/7. However, all these symptoms get even worse if I go over my very narrow limits so I still experience post exertional exacerbation.

 

[Breeze]

Agreed