NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

BPS cult are those doing the Governments bidding......
Part of the problem is the CCGs are signing up to the new emphasis and Government policy for chronic LTC, IAPT £££££ :and the CCGs are therefore encouraging a "wider type pf patient" in their supposedly "ME and CFS Service Clinics.

Its a "sheep AND goats" scenario.These clinics are often actually "ME and CFS/Fatigue" or fatigue clinics.

With the pressure on Mental Health /fatigue and the paucity of service provision, ME clinics are being forced to take these 'fatigue' patients who in turn often ASK for CBT etc.....

I know this to be true to our local service for Norfolk and Suffolk, as I received a detailed missive yesterday from the controlling CCG Waveney, and the Norfolk and Waveney Joint Strategic Commissioning Committee chair, (who took lock, stock and barrel what the provider ECCH said.)

See below from Joint Strategic Commissioning Committee chair;

"The detail for response has been compiled with the service provider ECCH and should be read alongside my original response which sets out the commitment of commissioners regarding reviewing the current service provision"
"The service reports that there are a higher number of complex patients being referred to the service with both physical and mental health issues. Therefore some patients are in need of additional support as the profile of patients has changed significantly. We recognize that more robust data collection is required to support this and consideration of accessibility of psychological therapy which is being requested by some of the referred patients.

Our analysis from Annual Change Auits for service 2012-2018;

5.2 The percentage of GPwSI & Therapists who believe ME & CFS to be a mixture of physical and psychological illness remains disappointing.
As the data from the ME Association demonstrated there are improved outcomes where health professionals believe ME & CFS to be physical illnesses; there is a clear training need.

Their reply; "Chronic illness of whatever type may present mental health issues due to the consequence of dealing with a long term condition. I note that no respondents believed the clinicians thought it was a solely psychological problem."


This blurring of the patient population situation is very convenient for the CCGS who state they are "meeting the needs" of their population holistically, in terms of both the mental and physical.
Many of the mental health type symptoms are either a consequence of being chronically ill for so long, or due to as yet, unidentified hormonal or other problems; co morbidity misdiagnoses or 'missed' diagnosis, neither further or fully investigated.

It's clear to me that NICE have been persuaded in the same direction.......
This current committee line up is testimony to the above facts......
 
Esther12 said:
Or at least, that's the impression they're trying to give you. A lot of the people so far announced look terrible and incompetent, with clear vested interests in turning a blind eye to the problems with the way that they have been making their money.
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I was not able to read all the posts. Just my quick (by my standards) thoughts on whether protesting or not.

I think the scope document could be more important at the moment than some/ many problematic appointees. @adambeyoncelowe said on the other thread that NICE fixed the false phrasings of his comment. If that's true, they are taking patients seriously at least with this regard. If it's not true, I think it should be our primary concern that the scope document contains the correct commentaries of S4ME and other stakeholders on our behalf.

I think when protesting against appointees, then this should happen on very well considered reasons. As someone pointed out, two appointees from the same institutions could be a good reason.

I severely doubt that it would be a good strategy to argue against any appointee's BPS stance per se.
 
MSEsperanza said:
I think the scope document could be more important at the moment than some/ many problematic appointees. ..
I think when protesting against appointees, then this should happen on very well considered reasons. As someone pointed out, two appointees from the same institutions could be a good reason.

I severely doubt that it would be a good strategy to argue against any appointee's BPS stance per se.
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I've not thought about whether any form of protest would be useful at this point, but I think that the make-up of the committee is more important than the scope document at the moment. If the committee was free of people with a vested interest in ignoring/downplaying problems with current ME/CFS services, then the scoping document would be very important... if a really substantial portion of the committee is made up of those who've been making money from providing BPS care, then I don't think that the scoping document matters that much at all. I doubt we're going to get turkeys voting for Christmas.
 
Andy said:
Personally, if Jo Edwards recommends us to wait and see then, for the short term, that is what I will do.

In regard to concern about PEM being sidelined, NICE changed the wording of the scope, following comments from many patient orgs, to more explicitly focus on PEM rather than fatigue as a defining symptom, and to make it clearer that PEM is a result of over exertion, rather than just a vague "we feel worse when we do more".

ETA: Here is what is now in the final scope, which can be seen here https://www.nice.org.uk/guidance/gid-ng10091/documents/final-scope. Not quite as clear as I thought it was earlier but PEM is definitely in there.
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I'm with you on that one. Jo will know a lot more than most of us. Anyhow I think it is too late. I do think we need to know how these CFS dominated places work from those who are the most vulnerable. Forewarned is forearmed?

I did a lot of work on the scoping meeting and went to the first meeting. That was my point they missed the PE out and just put in the M. I would say this is a compromise and plays in the hands of the CFS lot as they use malaise as a sickness belief.

We need to hear the voices of those that count the most and that is the children. Their history such as all those that have grown up with ME in their lives, now 30 + and are still ill should be the ones that tell us what is needed as the guidelines are being drawn up. Keep the focus on what has happened and is still allowed to happen to our most vulnerable. Children and their parents are often willing to talk they just get brushed aside and that I feel is a big mistake.

The scribe on my table was very attentive and was shocked at the treatment our children experience. Dr Wier, Shepard and Nacul backed me up with regards to children and the severe. Many of us spoke with the same voice. Oh and men, men get a very rough deal and as I have a young son I made that point loud and clear.
 
In any disease the description of the disease is the basis for all that takes place.

We know the description of ME (as per Ramsay) was corrupted in the mid 1990s and that the CFS narrative of fatigue led to the MUS mess.

On here many arguments fall into the same trap of the terminology meaning different things to different people. We have differences about what CFS and ME are in each country and within each country. To expect a panel to come to consensus when there is no consensus on what ME is and what CFS is destined to fail.

If the first thing the panel could do is clarify the framework (criteria) for the patients that are being discussed, that would be the best thing that could come out of this.

As the US is currently pushing for there to be 3 different ICD codes for the group now known as ME/CFS, it makes sense that the panel should immediately address this issue. If they could come to the understanding that some on the panel are coming at this disease from the ICC point of view and some are is coming at this from the psych point of view, and some see the disease strictly a fatigue issue maybe we could finally break through this log jam.

As the US government agencies and many advocates are focusing on defining the disease using the broad SEID criteria, my fear is that NICE is planning on going that same route which will leave those who have ME as per the ICC out of the conversation. I think Greg Crowhurst does a good job of clarifying the issue.

 
Alena Lerari said:
Not that I am a doctor but I was interviewed for the lay member position and was told that my stance on GET and CBT is a conflict of interests. I obviously did not get the job. Peter Barry was one of the people interviewing candidates.
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I wonder if you were excluded more because you declared a view as a potential COI? It wouldn't amaze me if the selection process failed to do any serious assessment of people, and just left it to candidates to decide for themselves what should be viewed as a COI?
 
Sasha said:
According to NICE's website, they "are accountable to our sponsor department, the Department of Health and Social Care, but operationally we are independent of government."

Are you saying that you think the DHSC is influencing who is app ointed to the committee?
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Yes. NHS call for the guidelines and they called for safeguarding to include FII also for the Functional Neurological disorder (FND). Put the two together and you have a perfect way of protecting CBT and GET on children at least.

Moderator note:
The detailed discussion in this post has been moved with the poster's agreement, along with other posts copied from this thread to a new thread here:
NICE guidelines and the needs of children with ME
 
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Colleen Steckel said:
As the US government agencies and many advocates are focusing on defining the disease using the broad SEID criteria, my fear is that NICE is planning on going that same route which will leave those who have ME as per the ICC out of the conversation. I think Greg Crowhurst does a good job of clarifying the issue.
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Sorry, don't agree. There is no proof that I can see that a particular definition is being excluded.
 
Sasha said:
I can see where a conflict of interest might arise if someone is making a living from providing CBT and GET but not otherwise. Are you able to say anything about why you were seen as having a conflict of interest?
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I was told during the interview that my views on GET and CBT would be seen as a conflict of interest. Followed by a lot of questions about how I would handle other members of the committee who did not share my views.
 
Alena Lerari said:
I was told during the interview that my views on GET and CBT would be seen as a conflict of interest. Followed by a lot of questions about how I would handle other members of the committee who did not share my views.
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Can you remember what views about CBT and GET you expressed?

I'm interested in why your views were seen as a COI, but those who had been making money from providing CBT and GET were seen as suitable for the committee.
 
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My view is that NICE have been trying to get it right recently. I'm not sure they will achieve enough to satisfy patients sufficiently though, it depends how well they read the realities of the situation and what the eventual outcomes of that might be.

Inevitably, there are going to be some poor choices of people on the panels due to the current situation with clinicians and researchers in the UK and the historical problem that it is so heavily saturated with BPS beliefs.

The test for me is whether there are enough good choices alongside these others. I am a bit concerned to hear that some have been ruled out due to their existing views being seen as COIs - clearly the same could be said for several who have been accepted, with several having very firmly held views already!

Naturally, people will already have formed opinions to a point. Whatever the view, some hold them because they have never learned to think for themselves and are too impressed by people higher up who tell them what to think. Others because it benefits them (the turkey isn't going to vote for Christmas). And others because they are right - frankly, those who think GET is crap, for instance, think so because the evidence shows it is crap, so I can't see any good reason to exclude someone for that reason.

I'm going to wait and see what the complete list is but I think NICE have to be very careful. If they fail with this review I just don't see patients accepting it, things have moved on a lot since the last NICE review, patients are organized, organizations have got better, and I just don't see a situation where we will accept a lack of real progress from NICE.
 
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