NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

It is also interesting that the Vice Chair, Baroness Ilora Findlay works in palliative medicine.

 

Thank you

 

Well, UCLH run their paediatric CFS (never call it or diagnose anyone with ME) as MUS/CFS. Here’s a picture from the waiting room.

 

It was frustrating when people mentioned the 'multidisciplinary care' thing. I wished someone had spoken out against it, because no one did, but I felt there were only so many objections and disagreements I could voice without seeming perverse. By being randomly assigned to groups, it's not even like we can each agree to raise 2-3 things each beforehand, so there's a lot of pressure.

I challenged as much as I felt I reasonably could, though. NICE seemed to recognise that we need objective measures of improvement rather than subjective ones, and Jonathan ingeniously proposed a model used in RA that combines subjective and objective measures for an overall assessment of improvement.

If we could get objective measures enshrined in the NICE guidelines, then that may help us build up an evidence base. Things that don't work will then quickly become apparent, and the next time we go through this process, we can use those figures. If clinics refuse to use objective measures (as I suspect many will), then that in itself will be a failure to meet the standards expected.

One thing Baroness Finlay of Llandaff mentioned (I may be misremembering the attribution because my brain is now fully frazzled, hence my delayed reply here today) was that we need to build evidence and share data so that we have a solid foundation for future research and collaboration. She mentioned that the biobank was promising for this reason, and mentioned oncology as an area that received a sudden upswing in research due to sharing info between clinics and building an evidence base.

Returning to clinics, there is obviously a lack of transparency and what limited evidence there is shows wildly differing services and outcomes, even when they claim to all follow NICE guidelines.

 

Oh! I don't like the look of that! So by CFS do they mean CFS/ME as in the CG53 guideline from NICE, or do they mean some other CF symptoms, that they now are siphoning into MUS. And for children!

 

It’s all psychology based. Been through the admissions “treatment” and have nothing positive to say.

 

Thank you

 

And did you see how they compare mild CFS to Mus headaches !

I think a compilation of noticeboards across the country would be quite powerful for the next NICE meeting to show what a shambles the whole thing is in terms of inconsistency etc ?

Thank you @Alena Lerari for showing this. (And welcome aboard ...I’m looking forward to your next posts )

 

Thank you

 

I'd like to think it might be an example of a psychiatrist (who seem to have been bred to believe that because their world is subjective then nothing else counts) beginning to realise people's ability to actually do stuff does have credence.

 

The sole ME specialist in Scotland is a nurse.

 

If the ME world was normal and psychiatry had not invaded ME research with all its cr*p, but instead was just decent psychiatric professionals trying to support sick people, then I would feel very happy to have one on board. Unfortunately that is just la la land at the moment.

 

An important question that occurs to me, which should be asked of NICE later down the line: When NICE is reviewing the evidence, will it undertake to read the full papers it is reviewing, and not just the abstracts? Do these sort of questions need noting down to ensure they don't get forgotten later on? @Jonathan Edwards, @MEMarge, @Andy. I appreciate this question of mine will be pretty obvious anyway, and unlikely to get overlooked, but better safe than sorry.

 

We raised this specifically. I wanted an assurance that evidence gathering would not just be done by the 'techies' and the conclusions passed on to the committee. The NICE co-ordinator was clearly ready for the question and said that it had been agreed that a much more proactive interaction between technical and committee staff was going to be needed and yes, they are aware of the critical publications. My understanding is that the chairman has already looked at the JHP volume papers.

The horse will be taken to water, I think we can be assured. The question is whether it will drink.

 

Excellent.

 

That was my impression too. I am feeling cautiously optimistic. They seemed well informed, so I can only assume the campaigning and controversy have had the desired effect. I think they want to limit future furore, and this guideline is crucial in winning back some popular support.