Feedback from Stakeholder Engagement Workshop for the NICE guidelines on ME, Jan 2018

Right

 

Thanks to everyone that attended.

From my point of view I think stating there is no cure at the moment is something that GP's should be encouraged to do. However this should also not let them off the hook to effectively write patients off as time wasters following a ME/CFS diagnosis as sometimes happens.

I think the new guideline should have some emphasis in it to encourage GPs to monitor ME symptoms and act upon any changes to retest for other conditions that may develop. My biggest fear is that they will miss something like cancer or heart disease because it's being masked by the regular shitty symptoms. I'm sure hypothyroidism, PA and a whole load of other conditions are going untreated unnecessarily as well for a whole load of ME patients for the same reason.

 

I think this was put across well at several tables. And I suspect it will be skin of nobody's nose to include it. I see that as a fairly easy one to get through - if only because it will seem a way to placate if other issues are not so black and white (sic).

 

If people choose to exercise for whatever reason so be it, but I would have thought it's bad advice to tell people to exercise when
A) it's a hallmark of the disease that exercise can aggravate symtoms
B) there is no evidence for it doing any good
C) exercise for a healthy person and for a PWME can mean two completely different things.

 

But there is evidence from PACE that certain treatments worked, and produced improvements not only in subjective but also in some of the objective assessments - seeing the specialist, getting a clear diagnosis, understanding boom and bust, getting treatment for pain relief, help with sleep. The group that only saw the specialist recorded such improvements. I do know a number of GPs who don't even offer that until the person has seen the specialist, thinking, erroneously, that the specialist will recommend something. They often don't.

 

Yes, I agree with all those. But I don't think any of the research findings make it any more of a bad idea.

 

One of the things that troubles me is the lack of advocacy on behalf of patients by doctors, and particularly GPs. I have been seen by a number of GPs since I was diagnosed in 1992. None of them has been able to do anything substantial to improve my condition. Some have made my life more difficult through ignorance and hostility but the most any have been able to do is to be supportive, kind, and cooperative in making referrals etc. I would have thought that this would have caused them concern and distress. One supportive GP told me when he retired that he was sorry that he had not been able to do more to help me, and others have expressed similar sentiments. Surely most GPs must be aware that there are numerous ME/CFS patients that are very unwell, not getting better, and not helped by any of the treatments on offer. Why have they not been speaking out on our behalves, demanding investment in research and proper services? Should we not expect these people to be more than just passive organs for enacting the diktats from NICE? Where are the all the disinterested doctors (like @Jonathan Edwards ) speaking out, not because they are ill themselves or because they are a carer for someone who is ill, but just because they care about the suffering of patients they are unable help?

[Edited to correct typos.]

 

Some doctors seem to forget that this is BIG help. My GP can't do anything substantial to improve my state, too, but he is contributing substantially by supporting me whenever needed. For me, that's major.

 

And weren't they diagnosed using very loose criteria?

 

Added to which, the point brought up a day or so back from a PACE participant (can't recall where now), that some people didn't necessarily do more physical activity at all, but simply exchanged some of their private activity for PACE activity, because they could not do more overall. Raised before of course, but interesting to hear it from a PACE participant. Would have been an incredibly difficult possibility for the authors to foresee of course .

 

I agree. This is a huge issue (not just for NICE, but everywhere). It is a major obstacle to getting GET/CBT recommendations removed.

That's interesting. What makes you think this? My sense is the opposite, that many pwME/CFS have POTS (diagnosed or undiagnosed). In terms of the previous point about doctors not being comfortable with not having anything they can do, managing POTS symptoms (heck, even diagnosing them using something simple like the NASA Lean Test) is a something tangible which doctors can focus on, and which would improve the quality of lives of patients. Plus, there are clinical trials for POTS treatments (though I'm not sure if there are any in ME/CFS), so NICE could at least draw on that evidence-base in its recommendations.

 

My concern as you say when you look to the research there is little. Patients know that GET harms them but this is not clearly documented. Doctors want to help patients and there are thousands of patients benefiting from heart rate monitoring and their response to exertion is both highly measurable and easily quantified. I am doubtful that patients will see beyond GET as per PACE and uncontrolled and fail to recognise that heart rate monitoring can be used to guide rest and activity. It is not exercise that is bad it is too much exercise, the wrong exercise (aerobic). I want NICE to lead the field to look to the Workwell Foundation and exercise physiology based managing and monitoring of the disease. I want the physiological similarities between ME patients and over trained athletes to be recognised and doctors and patients to be made aware that they most likly need more rest. Am I confident nope. I see endless debate about the need for clinics (true but not NICE), the name (seriously that won't get me well- I like dropping CFS as that drops the Oxford criteria, the Fukuda Criteria....). I think we need to argue for NICE to take a critical look at controversial claims made by PACE and the real objective evidence that PACE have been hiding. No collection of data on harm from GET is not NO harm.

 

Sorry! What I was meaning was that starting to understand ME, realizing that the scary symptoms are normal, avoiding boom and bust, pain control, sleep advice are really the things that need to get sorted at the start. They can happen with a good support group and with a GP that tries to help with those things. Those are the things that can be done at "ground level", and people don't need to wait a couple of years to see a specialist. In my case, finding out that a couple of stronger co-codamols gave me a better night's sleep definitely improved me. But it took 6 years, and sciatica before I found that out. My old GP wouldn't prescribe anything to help with the symptoms of ME. I'd like the guidelines to give GPs more confidence to try to manage these aspects - the MEA purple booklet gives some good suggestions.

Yes, it is possible that the boosts in performance in the group that only saw the specialist was due to other things, but in my own personal experience, and seeing the experience of others in my group, I think pain control (if at all possible) should be a priority, as should some proper help with sleep (not some ridiculous garbage about not sleeping during the day).

And finally, if doctors are pulled away from relying on all this psychological garbage, when we go to them with other symptoms that don't fit the ME pattern, they might start to take that more seriously. We all have stories about that.

I'm getting bitter again, aren't I?

 

There is NOT nothing to offer there is heart rate based pacing. This is what thousands are using to get well and to minimise payback. It is research based and patients are using it. Heart rate based pacing is NOT a treatment but is an effective management tool. There is a lot of literature on exercise and heart rate. CBT based on reducing stress is useful it is the idea that the disease is soly psychological that is a problem and that you can think yourself well.

 

@Valentijn or others may know more about this. My understanding from the discussions we have had and studies quoted is that most orthostatic intolerance in ME/CFS when studied has not conformed to POTS but falls into other categories such as neurally mediated hypotension. The claim that POTS is common in ME/CFS is widespread but so many things like that in this field are not based on good data collection. In many cases myths are perpetuated by physicians without any real physiological training.

 

I do not know of any scientific studies that show a specific form of exercise causes harm in ME patients. Are there?

Do we know CBT based on stress is useful - as far as I know we know nothing about the benefits of CBT.