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

Jonathan Edwards said:
I would be interested to know what the evidence base for therapist-delivered treatments for MUS is - if there is any. My impression has been that PACE and the GET meta-analysis for ME have been taken as the bedrock evidence from which to extrapolate. If we can get to the point where it is agreed by NICE that this evidence is not there then the MUS programme will be out in the cold in terms of its own guidelines. There are other political forces at work in the NHS, like IAPT, but much of the programme is driven by academic doctors wanting to build psychosomatic empires through pseudo research. If it becomes clear how pseudo this is for ME maybe it will dent the bigger program.
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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.
 

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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.
 
Keela Too said:
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!
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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 :))
 
arewenearlythereyet said:
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 :))
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Thank you
 
adambeyoncelowe said:
he'd previously agreed that using actometers was a sensible idea, although it seemed like the idea had never occurred to him before, which is worrying
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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.
 
Trish said:
I agree that it would be best to close the present clinics that are based around teams of OT's, physios, psychologists and psychiatrists.

I like the idea of replacing them with physicians who keep up to date with biomedical research and do a thorough job of differential diagnosis and explaining to patients as @Jonathan Edwards has described he did for RA.

I do think there is still a need for newly diagnosed people to be helped with symptomatic treatments, and to be taught about pacing and the importance of listening to the body and resting, and getting help with schools and employers. Who is best placed to do that, I'm not sure. For Parkinsons' disease in my area this sort of role is played by a specialist nurse.
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The sole ME specialist in Scotland is a nurse.
 
MEMarge said:
Also a liaison psychiatrist from the Maudsley Kings, who presented as reasonable, but is keen to have a psychiatrist on the Committee.
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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.
 
Barry said:
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.
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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.
 
MEMarge said:
She is a paediatric physio.
She also said that they had just finished the Magenta trial and the results looked good!!
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Interesting. One thing that struck me about Magenta is they seemed to be adopting heart rate monitoring and getting people to keep HR below 70% of maximum so activity would be likely more tolerable than under the unmonitored approach which seems to be the norm. I assume that to keep heart rate below 70% much of the activity undertaken won’t be aerobic.
 
Jonathan Edwards said:
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.
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Excellent.
 
NelliePledge said:
There is a model for what a physician led service could look like even without specific medication for ME.

Yes, indeed and this is what we were aiming for;

"A report was done a while back for Eastern England - was it someone from the Biobank - I will dig around. Ok so this is the Norfolk and Suffolk group working to try to get a service in their area needs assessment document is on this website which was agreed in principle by NHS locally but they haven’t delivered. http://nandsme.blogspot.co.uk/p/homepage.html?m=1-"
Yes, the Needs Assessment (first comprehensive one done for ME in the Country) was organised by Norfolk Public Health who were then in charge of overseeing the Suffolk/Norfolk Specialist Clinic with a great officer, Ian Ayres former Director of Commissioning Development at NHS Norfolk.
(Ian is Managing Director for Dartford, Gravesham and Swanley; Medway; Swale; and West Kent clinical commissioning groups. Prior to March 2018 Ian was Accountable Officer for NHS West Kent Clinical Commissioning Group. He joined the NHS in 1995 working with GPs in south west London, leading a large total purchasing project. He then worked as a chief executive officer in the first wave of primary care trusts (PCTs), as a director of operations for a strategic health authority, and was a chief executive of two other PCTs.

The above was finally followed;
"A final report has now been released following the feasibility study funded by 6 of the 7 CCG's who commission the service. The feasibility study concluded that cost neutral service change could be delivered to address the significant and longstanding inequalities of care, especially relating to the severely affected. If implemented the service change would form the foundation for developing a biomedical service which is more in line with that delivered to people with other neurological conditions such as MS, and also with links to ME research projects."

It was released publicly and placed as an appendix to the Joint Health Overview and Scrutiny Meeting and can be read here,
Meeting of the Joint Health Overview and Scrutiny Committee (HOSC) 4 April 2017 - Meeting Documents


"A physician led ME Service in every area with specific responsibilities to develop and maintain biomedical knowledge would be able to overcome roadblocks to potentially beneficial off label use of existing medications as appropriate for each patient individually. Melatonin for example which CCGs seem to have some issue with and GPs aren’t able to prescribe in many areas. Albeit the physicians would be a sort of super GP for ME patients they would be able to do testing eg for POTs."

Totally agree with above and what Jonathan has stated about need for physician led Services.

There is a cultural benefit to patients from being under a specialist service. I felt my employer and family started to take ME more seriously when I said I had been referred to hospital clinic. Also when I went to see a specialist privately.

............Still feeling shell shocked from Friday... and I don't have ME! NICE organisation and process is questionable. Email invites disappearing; barring of local groups after accepting them as stakeholders, then allowing other "local groups". Changing the time allowed for the meeting, originally 3 hours to 2 hours on the day- far too rushed and we did not complete a full discussion. As for the issue of paperwork so late... ahhhhhh.
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Jonathan Edwards said:
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.
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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.
 
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