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

The consultation for the draft scope closes 26 July 2018 at 5pm. Therefore, we need members to look at each section of the draft scope and provide feedback, in order to inform any comment that S4ME may make on the draft. So please read the below and comment away!

(Full document can be found here, NICE webpage on the process is here, we did have an initial thread on the draft scope here but these individual threads are to capture comments on the individual sections of the draft.

Thread for the the second part (Who the guideline is for) can be found here, and for the third part (What the guideline will cover) here.)

Section 1. Why the guideline is needed.

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.

ME/CFS is a disabling and distressing illness characterised by extreme and debilitating fatigue, particularly after exertion. Clinically, ME/CFS is heterogeneous and multifactorial and people experience the illness differently. Common symptoms include chronic pain, disordered sleep, digestive problems and cognitive difficulties. For most people with ME/CFS, everyday life is severely disrupted and a complete recovery is unusual, although this can vary depending on the age of onset.

The causes of ME/CFS are unknown but there are thought to be many contributing factors. One commonly reported trigger is the onset of a viral illness and post-viral malaise, although the reasons for this being a trigger for ME/CFS are not understood. The lack of understanding of the aetiology of the condition has contributed to a number of different symptom-based definitions being used in research and in clinical care. Ongoing research into the causes and pathological processes underlying the symptoms of ME/CFS includes examination of immune function, autonomic function, neuroendocrine disorders and gene expression.

The estimated minimum prevalence rate of ME/CFS in the UK was 0.2% for people meeting either the Centers for Disease Control and Prevention (CDC) or Canadian case definitions in a UK primary care cross-sectional study. People with ME/CFS report delays in diagnosis, and research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage ME/CFS. However, a review of diagnoses at a referral centre found that 40% of people referred did not have CFS but had fatigue associated with another chronic disease; a primary sleep disorder; a psychological or psychiatric illness; or a cardiovascular disorder. In the same review, 5.2% of all the people referred did not have a clear cause identified to explain their fatigue.

People with ME/CFS have reported a lack of understanding among health and social care professionals about their illness and related problems. There are added issues for children, young people and their carers when illness makes school attendance difficult and families come to the attention of educational and social care services.

The previous NICE guideline (CG53) made recommendations on the use of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The evidence supporting these interventions has been challenged and some people with ME/CFS report being pressured to participate in exercise programmes, leading to a worsening of symptoms. There is therefore a need to review the evidence for these and other interventions.

ETA: Additional text and link back to original draft thread.

 

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

Any reason for the seeming aversion to "disease"?

 

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 like the term Catherine Hale uses in her report for the chronic illness inclusion project of stamina impairment to describe the way my ability to do things is limited. Not fatigue. Also isn’t every disabling illness distressing don’t like the overemphasis on this right upfront.

 

Not too bad. Main issue is the usual obsession with fatigue.

 

Is this the same draft which had been posted in the already exsiting thread? https://www.s4me.info/threads/the-d...s-is-now-out-for-consultation-june-2018.4697/

If yes, wouldn't it make sense to move the comments from the former thread to here?

[insert "confused" smiley]

 

This is the first section of that same draft, there are another two threads collecting comments on the second and third sections respectively.

Quite honestly, there isn't much comment in that original thread, and, of what there is, I didn't want to spend time figuring out which section each comment there applied to, or if it applied to the draft overall, and if it did, should I copy the comment into all three new threads. If someone else wants to do that then I'm more than happy for them to do so.

 

I wish the fatigue narrative could be changed; some suggestions..
'energy deficiency', 'abnormal energy depletion' , '[periods of] constant exhaustion, 'overwhelming exhaustion', and of course 'exertion intolerance' should be in there.
Re PEM, 'extreme symptom exacerbation following exertion'.

Otherwise it leaves us wide open again to the whole tiredness/fatigue misrepresentation.

eta: not sure what's covered in the other two sections so will read them first before any further comments on this thread......

eta2: I can't find it mentioned anywhere but should it also not be noted that the worsening of symptoms with PEM can be cumulative (particularly in the severely affected) although I am not sure if there is any research evidence of this.

 

Agree with the previous comments.

The text itself actually contains an excellent argument for taking the focus off fatigue: the fatigue focus is a major contributor to misdiagnosis. If the focus was on PEM instead, most of the patients referred to in the text likely would not have been misdiagnosed.

Also, should a mention be made in this section of the severely and very severely affected who may not be able to access any healthcare at all?

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

Clarify in the GET/CBT section that patients may be forced to do GET & CBT in order to access benefits.

Maybe add neurological and autonomic nervous system disturbances to the common symptom list.

 

Agree with @Ravn very severe PWME need to be explicitly referenced otherwise Drs won’t know very severe exists.

 

+1

 

I agree with this. PEM should be given more emphasis than fatigue, which as @duncan notes is part of the constellation of symptoms, but isn't necessarily a primary or defining one. However, the term "PEM" is a bit like CFS in that it is also belittling.

From the Shorter OED:

It might not be the time to rename PEM, but I still think it worth stating that a term similar to that which Sly Saint suggests would probably be preferable, and for what it's worth, I proffer "post exertional symptom exacerbation" or "post exertional symptom worsening" as starting point suggestions only.

 

Should ME with PEM and cfs ie without pem be separated into two?

 

Since PEM is the thing that distinguishes ME from other disease chronic fatigue without it is definitely a different thing. The only exception is in the severely affected where they are basically in PEM all the time so their symptoms can't get worse.

I like the idea of loss of stamina instead of fatigue. I very rarely experience fatigue but I know I have overdone things when I run out of energy sooner than usual. I am being washed in the shower and suddenly I have to hold on to a grab rail or I will fall over. Other times I go to do something but after a couple of steps all the energy has gone.

There is a worrying trend when you look at other illnesses which have fatigue, the symptom is called CFS and the distinction between chronic fatigue and the illness from Tahoe called CFS is totally lost. I don't know how we could sort that, but losing fatigue as a primary symptom woould be a firts step.

Fatigue in ME is plays exactly the same role as fatigue in MS. It exists, it can be a significant symptom for a lot of people but it is not what first springs to mind when the disease is mentioned and all the research funds are not spent on it.

 

I am severely affected in that can't sit up in wheelchair so mainly in bed except trips to loo, but I certainly get PEM. My ME fluctuates to point where head can be reasonably clear if have paced really well but then so easily crash for trivial things - sometimes get symptoms at the time but usually not, but symptoms always worse next day often then long lasting, and PEM is for me the worst symptom, like walking a tightrope.
Cant speak for much more severely affected but would assume they would get it too.

 

I had always thought PEM was cardinal in all cases of ME but some very severely affected who had previously had PEM now felt they were just continually in the same bad place. I suppose if you can't bear light or sound at all it is difficult to see an increase. Needs research but how do you do it on such sick people?

 

Re PEM in the severe , i am very severe and yes I am in often constant PEM because any life /stimulation is an exertion , however I can also, like the rest of you, get grades of PEM so if I'm exerted extraordinarily, which for me is a doctors visit or necessary moving from bed I will get even more PEM and the delayed and prolonged payback, often with fevers and sleep disturbances etc we all recognise. Plus even worse function to the extent of being virtually unresponsive, virtually paralysed, completely intolerant.

It's very few who are virtually unresponsive, virtually paralysed, completely intolerant all the time. I'm just in an out of that all more often and a lot more easily than someone less affected.

I was thinking the other day that the toleration threshold in ME just gets smaller to unbelievably small. So in my early stage the " electric fence" was going out a city or country side , so if I had a day or half a day out I'd get payback. Then after years the fence got around my village, going out, /stimulation being upright more than an hour caused it. Then the fence was around my house then my bed, staying in bed on my own I could be free of PEM doing the basics of life but mainlyresting , then I got worse and the fence is around my body , any activity and ssssss I sizzle.

Re the NICE paragraph I'm not happy with the perpetuation of the fatigue definition, IOM called it systemic disease, it's a constellation of symptoms with unusual and characteristic stamina issues, connected to severe flare ups which can develop into disabling levels of weakness.

In the section why is guidelines needed I'd insist doctors were told of the importance of early diagnosis, support and good management as essential to maintain and hopefully improve function and prevent what can be rapid and catastrophic decline, sometimes seemingly irreversible.

 

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.

 

These are excellent points and very succinct. Fatigue should be relegated to a minor symptom in just the way that it is for MS.

I think I just misunderstood about PEM or rather PENE in the very severely affected. Sorry about that.

 

Thank you and no problem @Mithriel