MAY BE REPOSTED
Below are some brief personal notes by Charles Shepherd (The ME Association) on the APPG meeting that took place on Thursday 22 February 2007 at the House of Commons.
LIST OF THOSE PRESENT
Des Turner MP, Chairman
Andrew Stunell MP , Vice Chairman
Tony Wright MP, Vice Chairman
Peter Luff MP
Dr Esther Crawley, Professor Peter Littlejohns and Adrian Ward (representing NICE).
Sarah Vero (Research Assistant to Dr Ian Gibson MP)
Doris Jones (25% ME Group)
Fiona Cairns, Angela Murphy, Heather Walker (AfME)
Christine Harrison (BRAME)
Dr Charles Shepherd and Tony Britton (The ME Association)
Paul Davis (Research into ME)
Hugh Berger, Jo Dubiel, Ciaran Farrell, Gus John, Diane Newman, Clive Page, Jill Pigot, Criona Wilson
Apologies were received from a number of MPs and Jane Colby (Tymes Trust).
Before the meeting started Dr Turner asked that if anyone was intending to tape record the meeting then this should be made clear at the start.
All of those present were provided with a copy of the joint statement on the September 2006 draft of the NICE guideline that had been prepared by the patient support charities and organisations (ie 25% Group, AfME, AYME, BRAME, CHROME, ME Association, National ME Centre, Tymes Trust)
PRESENTATION BY REPRESENTATIVES FROM THE NATIONAL INSTITUTE FOR HEALTH AND CINICAL EXCELLENCE (NICE)
The main part of the meeting (lasting from about 1.40pm to 2.45pm with an interruption for a division bell at 2.30pm) was devoted to presentations and discussion involving Dr Esther Crawley (Consultant Paediatrician who sees around 150 – 200 children and adolescents with ME/CFS each year and is a member of the NICE Guideline Development Group) and Professor Peter Littlejohns (Clinical and Public Health Director at NICE). They had agreed to attend in place of Professor Michael Rawlins.
The presentations were followed by a question and answer session. Professor Littlejohns started off by giving some general information on the NICE guideline development process. Since 1999 he has been responsible for the overall process of producing clinical guidelines at NICE. The organisation now produces more guidelines on health topics than any other similar body in the world. Dr Crawley briefly described the process relating to ME/CFS.
These two short presentations mostly covered very familiar ground: all information is based on the best available evidence to answer clinical questions; an active consultation process; nothing is set in stone, etc etc. However, it was interesting to note that NICE are now giving a clear indication that they wish to be far more receptive in relation to looking at all forms of evidence regarding management options – the results of randomised controlled trials are not necessarily at the top of the hierachy of evidence. This appears to be a significant and recent shift and is something that is obviously very relevant to the ME/CFS guideline.
Among the main points to emerge:
- There appears to be no more room for public and stakeholder consultation on the content of what NICE believe is going to be the final version.
- The intention is still to publish the final guidance in late August and it looks as though the charities will not have access to the guideline before publication.
- Feedback on comments sent in on the September draft will be made available before publication.
- It was put to NICE in very forceful terms that in view of the importance of getting things right, especially in view of some of the information that had come from patient representatives during the course of the meeting, there should now be a further delay in publication. This was not greeted with any enthusiasm by NICE.
- In response to a question about whether NICE would still publish the guideline if it was clear that patient representatives still regarded it as unfit for purpose, and patient representatives on the GDG refused to endorse it, the answer was that publication would still occur.
- However, it was pointed out that there has been one precedent for a final NICE guideline not being published.
- On the issue of WHO classification of ME/CFS as a neurological disorder in G93.3 of ICD10, the NICE representatives had great difficulty in giving a clear answer as to whether NICE supported this classification. They did not appear to be receptive to including this information in the shortened version (the copy that will be read by doctors).
- When questioned as to whether ME/CFS was primarily a physical or psychological illness, the best answer that could be obtained was that it was 'biopsychosocial' – in other words there are physical, psychological and social aspects all interacting. It was pointed out that in the real world official bodies such as the DWP do make decisions on whether an illness is physical or psychological.
- On the issue of behavioural interventions (ie CBT and GET) there were several contributions from the floor regarding the unacceptability, lack of effectiveness and potential harm that can arise from these approaches. The NICE position appeared to be that the guideline would be offering these as options to patients rather than dogmatic recommendations about their use by health professionals. It was acknowledged that an opening statement in the current draft – When the adult or child's main goal is to return to normal activities then the therapies of first choice should be CBT or GET…. was very badly worded and it looks as though this will now be withdrawn. It was also pointed out to NICE that people with ME/CFS want to get better and that the reference to those whose main goal is to return to normal activities was offensive and insensitive.
- Issues relating to the severely affected and how these had not been properly addressed in the guideline were once again emphasised by several charity representatives.
- There appeared to be acknowledgement from NICE that the guideline had not made a good case for more research into biomedical aspects of ME/CFS.
- Defects in the methods for collecting feedback from stakeholders and people with ME/CFS during the consultation process on the September 2006 draft were highlighted.
- NICE acknowledged that the volume of feedback received from stakeholders and other interested parties was one of the largest they had ever received. This was the main reason for the delay in publication from April to August.
Among the contributions from the floor was a very moving account by Criona Wilson of events leading up to the death of her daughter, Sophia Mirza.
By the time the NICE discussion had finished, the meeting was running well over time. Discussion on remaining items was either brief or deferred till next time.
MENTAL HEALTH ACT AND MENTAL INCAPACITY BILL
Discussion deferred till next meeting
NEW CODE OF CONDUCT FOR APPG MEETINGS
Further discussion deferred to next meeting.
EARLY DAY MOTION (EDM)
This has now been prepared by Dr Ian Gibson, who was unable to attend the meeting. Copies of the EDM were handed out by his research assistant, Sarah Vero.
Wording of the EDM
This House recognises myalgic encephalomyelitis (ME) as a serious, long term, debilitating illness, that affects more people in the UK than HIV/AIDS; welcomes the Group on Scientific Research into ME's Report 'Inquiry into the status of CFS/M.E and research into causes and treatment'; notes the Department of Health classification of ME as a neurological condition; calls on all government departments to accept this definition; calls for the implementation of internationally recognised clinical and research criteria which reflect the Department of Health classification, similar to the guidelines used in Canada; calls for the collation of national epidemiological data of ME patients based on this criteria; calls for an independent panel of medical experts to review the existing international and UK biomedical evidence relating to ME to identify areas for further research; calls for massive further research into potential aetiology and treatments of ME.
NEXT APPG MEETING
Date to be arranged – probably after Easter. It is hoped that the NHS Plus guideline on employment will form part of the agenda at this meeting and that a representative from this guideline group will be able to attend
NB: It isn't always easy contributing, helping to administer a meeting, and taking notes at the same time. So please let me know if anything appears to be factually incorrect and apologies if I have spelt any names incorrectly. This is a personal note of the meeting for the MEA. The APPG minutes will be produced by the charity secretariat in the normal way.
Dr Charles Shepherd
Medical Adviser, The ME Association