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Campaigning for Research into ME (RiME)
NHS Services Inquiry
Before the summary of last APPG meeting plus Press Release (below), a few comments:
Note that the inquiry is about ‘ME/CFS’. The services descriptions in many parts of the country (see RiME Website, Clinics folder) demonstrate a wide remit re. patient controls. Not surprising given they are the product of the CMO Report, which was affected by work to do with a loose definition of CFS (see my comments at meeting).
So, this is not about ME as described by G93.3 or Canadian Criteria.
RiME will submit evidence but says, ‘in the context of ME does the project have integrity or credibility?’
The Chair of the APPG seems to be the person currently leading the inquiry. The APPG recognises G93.3 but the Inquiry, it appears, will be on something different.
If the APPG did have integrity and credibility, would it not be fighting the corner of ME patients; and if it were, would it not be critical of the clinics and pushing for biomedical ME Research?
Instead, we have the Inquiry. Already, people are commenting on it within a wider political context. Three on the committee (see below) are members of the Labour Party. A common question appears to be, ‘will it try to concoct a favourable report and publish it in the run up to the next election?’
RiME Summary of APPG Meeting 1/4/09
1.20 pm Terms of Reference 2 handed out by Heather Walker (AfME).
1.30 Meeting starts. Minutes becoming too detailed – Des Turner MP (Chair). Transcript will be available for this meeting soon. Minutes agreed after a couple of corrections.
Turner: Website with Inquiry details will be online next week.
Alan Golds says name of illness is important: CFS is not ME and this is at heart of issue. Turner says that’s debatable.
Jane Colby said ME must be separate from CFS.
Doris Jones says NICE guidelines naming of illness are at odds with WHO.
Annette Barclay asked about reporting on adverse reactions to treatments like CBT and GET in the NHS. She asked if this was covered in the ToR. Yes, said the Chair.
Jo Dubriel asked about drop-outs re. services.
Kirsty Heyward (Royal College of Nursing) said a study paper was under review (she spoke about different methods for measuring outcomes in CFS research) and will be published on PRIME website.
Sue Waddle asks if will there be anonymity for those giving evidence to inquiry. Turner says yes.
Joy Birdsey said parents feared child services.
Paul Davis RiME said that ME patients are boycotting the clinics because they are not about ME. I offered to read out anecdotes from ME patients in Yorks but Turner declined. The clinics are a product of the CMO Report 2002 and there is a road map: CMO Report > York Review 1 > a certain school of psychiatry. The toothpaste is now out of the tube. If I remember correctly, Turner said something about going with what we have.
Later, I mentioned that Sue Pemberton (OT Leeds Clinic) has done a survey saying 90% of patients had been helped by the service. Comments from an ME patient (1) the majority of attendees probably didn’t have ME (2) the clinics are dumping grounds for GPs who have patients with unexplained symptoms (3) what does help mean; little more than a chat perhaps?
Heyward says timetable for inquiry is too short. Doris Jones agrees. So did I (Paul Davis). Turner says Inquiry will be announced in press.
Andrew Stunell MP says inquiry will have limitations and people should not get their hopes up.
Peter Luff MP says report must be ready by next election (Stunell indicates May 2010).
Dr Derek Pheby has reservations about timetable.
Jill Cooper mentions how unhappy she is about the Milton Keynes conference this month (A).
Heather Walker (AfME) says that NICE guidelines might become mandatory.
Birdsey says that she knows of GPs who feel the government is interfering with their work.
Pheby – NICE guidelines are a curate’s egg.
Jones says that 88% of groups she contacted were against the NICE Guidelines.
Cooper says diagnosis is too wide and as a result, the illness is not taken seriously.
Sue Waddle said, if I remember correctly, (1) the Gibson Report was good but went up in a puff of smoke (2) the CMO Report was good but hadn’t been acted on.
Turner said that written evidence for Inquiry will be taken from patients and providers.
Next meeting: 2pm, 24th June 2009 – Turner. 14.55 Meeting ends.
(A) A paper was sent in by West Midlands ME Groups Consortium raising concerns about another NHS CFS/ME training conference in Milton Keynes; it is about mental health issues and getting patients back to work. It urged the CNCC to consider more robust diagnostic criteria ie Canadian and G93.3.
Disclaimer: the above is based on scribbled notes and I cannot guarantee 100% accuracy. It is confined to matters pertaining to Services Inquiry and related issues.
APPG Press Release 3/4/09: NHS Inquiry
Dr Des Turner MP, Chair of the APPG on ME, has today issued a press release, launching an inquiry into NHS service provision for people with ME/CFS in England.
The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, Peter Luff MP and the Countess of Mar.
Announcing the terms of reference, Dr Turner said:
“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.
“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.
“People with ME, carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.
“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”
A website is being set up for the inquiry, which will include the timetable of activities.
Until the website is activated, correspondence to: Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG.
Meeting: It was a bit better in that several raised concerns about nomenclature and classification; too, there was some criticism of the NICE Guidelines.
I don’t think it helps if people publicly express support for the CMO and Gibson Reports (certainly not in the context of services):
The CMO Report 2002 was not about G93.3 ME. It associated ‘CFS/ME’ with (1) inactivity and activity avoidance to be combated via GET (Section 46) (2) faulty belief systems to be combated via CBT (48). These types of treatment are now being implemented via the clinics.
The Gibson Report 2006 said (A) that it was extremely pleased with the advent of these centres and we hope they will be maintained and rolled out (5.1.) (B) that they were to his (Wessely’s) model (3.2) (C) that it was impressed with the work of Trudie Chalder (4.3) saying this treatment (CBT) has a role to play in treating CFS/ME.
Press Release – Inquiry: First, one has to get comments in re. survey by May 5. I’m going to take a short rain check on this (and commenting on Terms of Reference 2). Enough for the moment. RiME will post again, shortly, and give some space to inquiry on website.
22 April 2002