mrspoonseeker blog post, 21 Jan 2018: The NICE Guidelines – Starting Again?
N.B. Please sign the NICE Guidelines Committee petition – see below.
There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that Guidelines Director Prof Mark Baker declared: “We’re going to tear it up and start again. We won’t allow it to look the same” while Prof Jonathan Edwards reported as follows (writing in the Science for ME forum):
“What intrigued me most was the elephant in the room – the reason why we were there at all, which was not mentioned once by the speakers from the floor and I suspect hardly at all even in the groups – the need to remove recommendations for CBT and GET. It nevertheless became clear that the NICE staff were absolutely clear that this was why we were there and that they had taken on board that this was not an issue for a few minority activists but essentially for all patients. At our table the facilitator said ‘I presume everyone here is agreed on that’ – despite the fact that a paediatrician and an occupational therapist were present who I suspect may not have realised this was why we were there and for whom these remained standard practice”.
All this talk of ‘tearing it up’ and scrapping CBT and GET was less in evidence however, in the letters which Prof Baker exchanged with Kathleen MCCall(who was representing the Trustees of Invest in ME). Writing in advance of the Stakeholder meeting, Prof Baker wrote: “I appreciate that the existing recommendations are a matter of concern to some patients and groups and we will give some consideration to whether we need to modify or omit any of the existing recommendations during the development of the new guideline”.
This does not exactly sound like ‘tearing up and starting again’ so when the feedback from the meeting emerged, Invest in ME wrote again to question the discrepancies. This time, Prof Baker’s response was of particular interest. He wrote:
“I did indeed say that we will fully replace the guideline and start again…. However, it does not mean that we reject everything that is in the current guideline.”
So this sounds like parts of the guidelines are to be torn up then reinstated, which is easy enough with a roll of sticky tape but a bit confusing for those trying to gauge the mood music at NICE. Prof Baker goes on to explain:
“The problem is, I believe, in the unthinking and ill-informed manner in which the recommendations are imposed on people for whom they are not intended and/or not suitable… I was struck by some of the stories at the workshop about the misuse of the current recommendations and the disturbing extent to which they are imposed on people who are unlikely to benefit from them and for whom alternative approaches would be sensible… The current wording makes clear that patient agreement is required but I imagine that consent is not usually sought and that patients are not considered to have rights to refuse (which they invariably do have in fact).”
So it seems that Prof Baker is at least convinced of the need to safeguard severely ill patients, who do indeed all too often have GET imposed upon them – in clear violation of the existing guidelines. This crucial change is to be encouraged, of course, as is the need for all patients to be informed they have the right to refuse treatment. How exactly this is to be achieved is another matter however. As “the current wording makes clear that patient agreement is required”, what do you do to ensure such agreement is sought? Perhaps the addition of the words “we really mean it this time” in bold print would do the trick. The wholesale removal of GET from the guidelines would be more effective, I suspect, but to judge by Prof Baker’s letter to Invest in ME, that doesn’t appear to be on offer.
He says: “scrapping the entire guideline now would be massively counter-productive as it would almost certainly result in the withdrawal of the already dwindling number of services available to people with ME. Therefore, a rather more limited approach would be required to protect what is good whilst modifying what may be harmful”.
So in spite of saying he wants to tear the whole thing up and start again, Prof Baker clearly believes that bits of it are good and need to be protected. I can’t avoid the growing suspicion that these bits might include CBT and GET. Indeed, if not CBT and GET then what? A large part of our problem is that when it comes down to what purports to be ‘evidence-based’, there isn’t anything else. Of course the ‘evidence’ for CBT and GET is extremely unconvincing, as David Tuller and others have illustrated time and again, and the reason there isn’t the evidence for anything else is that CBT and GET – and the misapprehension about the condition which their adoption has brought into being – have effectively put paid to biophysical research for many decades. This sad circumstance may give us the moral high ground – from the perspective of those who understand – but it doesn’t actually help.
As Jonathan Edwards puts it: “All in all it seems to me that something important has been achieved but there is still more work to do. NICE are very clear that the great majority of patients believe that CBT and GET are worse than useless. They realise that a committee must not be made up entirely of psychiatrists. However, when the committee comes to look at the evidence the only evidence for treatments working they will find will be on CBT and GET. It is going to be hard for them to not at least mention that there is supposed to be some evidence. Hopefully that will not be followed by a recommendation. However, I sense an attitude even amongst physicians and paediatricians that if CBT and GET are not available they will have nothing to offer. A lot of doctors find that uncomfortable. They should not but they do. So there will be a tendency for CBT and GET to remain in the guidelines even if watered down. That will depend to a degree on who is on the committee. That needs some thought. Applications are being taken in June and July.”
So yes indeed, the personnel on the committee will be of vital importance.
We call on NICE to ensure:
- The process of deciding who determines the membership of the Guideline Committee is open and involves stakeholders.
- Whoever appoints the members of the Guideline Committee does not have any involvement in research into CBT-GET or is currently using these interventions to try to treat ME/CFS or is a colleague of anyone associated with the CBT-GET model.
- The selection of members of the Guideline Committee is also an open process and involves stakeholders.
- No one who has previously been a member of an ME/CFS Guideline Committee is eligible to sit on this new committee.
- No one with a conflict of interest is allowed to be a member of the Guideline Committee, and that conflict of interest includes any financial interest or researcher allegiance or close working association with someone linked to the CBT-GET model.
- Stakeholders should have a right of appeal with cause against members selected.