RiME Summary of APPG Meeting 22/1/08
The meeting took place in Committee Room 17, and started at 4.00pm. Five MPs – Ian Gibson, Tony Wright, Andrew Stunell, Ann Keen + Kerry McCarthy – and the Countess of Mar – attended.
Minutes: I Paul Davis RiME said that what I said July 12 ’07 was not reported, or even reflected accurately, in the minutes. I read out the comments of 5 Group leaders which condemend the services in their respective areas. Two of the five (Kent + Birmingham) were not mentioned at all, the other three were not accurately reported. My statement, corroborated by three attendees, has been sent to the Chair + Secretariat; will the minutes be amended accordingly. They will.
If I remember correctly, the Chair of Sussex Group and Charles Shepherd MEA cut in, commending the work of Dr Mitchell. This had nothing to do with what I said at the last meeting. I simply read out a letter from the Chair of the Norfolk Group which raised concerns about the current services in Norfolk (Mitchell retired there Sept. ’06, according to Norfolk Group). Details and concerns re. the Norfolk Services can be found at www.erythos.com/RiME clinics folder.
At this point Angela Kennedy drew people’s attention to her and Ian Mclachlan’s Petition; signed by over 500 it raised concerns about the nature of current ‘CFS/ME’ Services, that is the psycho-social approach. The Chair asked for a vote to have the statement included in the minutes. Why? The vote was 14/0 in favor.
Getting back to the minutes, I said this is not the first time that RiME’s comments have not been accurately reported or reflected eg July 2006: RiME’s comments re. services were reduced and diluted; important details omitted, altogether. Many appear to be of the view that the minutes are being manipulated and that MPs are being misled on issues such as services.
I also pointed out that the minutes say, ‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’, but that four people at the meeting do not recall this being said (this matter was not resolved at this point in time and I referred back to it at 5.00pm, asking that the statement be retracted. It was decided by a show of hands that it wouldn’t. I said in that case the matter will be referred to the Parliamentary Commissioner).
If I remember correctly, again, Tony Wright MP cut in at this point; he seemed annoyed at the points I had raised re. the minutes, people ‘harping on’, and said that Des Turner was sick and tired of the way he was treated at APPG meetings.
At this point, the Countess of Mar said something about, ‘I’m not listening to this’ and walked out.
Annette Barclay said she thought Paul Davis (RiME) was badly treated at the last meeting; she registered her disapproval of the heckling that he received and said at that moment the meeting broke down. Doris Jones 25% Group also said she felt Paul Davis hadn’t been well treated, and said that controversial subjects are not always mentioned in the minutes.
DWP: Barbara Robinson spoke about her discussions with the DWP and ATOS. She has approached them and hopes to meet them with ideas on how knowledge and training can be improved.
Shepherd said that without any DWP data to go on, following the introduction of the new guidance July 2007 all one has is anecdotes; more info. is required before asking a DWP Minister to return to the APPG; he suggested, meanwhile, a meeting with the DWP to discuss continuing concerns.
Gibson asked Charles Shepherd MEA if he would like an EDM on services. Shepherd says yes.
NHS Plus: Shepherd said the final version has not been seen. Dr Maddon was making some changes. Peter Spencer AfME was asked why Chris Clarke had signed them; he said Dr Maddon had not been able to prove this (which she had earlier claimed).
AfME Collaborative Conference: Peter Spencer AfME said he started the Conference by saying (1) proper debate must be carried out (2) there must be a commitment to learning from best practice (3) an over-dependence on some research data was destabilising research. Mary Jane Willows AYME said some were disappointed that certain people had not been invited; this was because some of her speakers had not been heard and this was more important.
Jane Colby TYMES said that David Salmon? had had a paper accepted by a medical journal; the paper questioned the data in another paper published by Peter White. White had claimed in a publication that PWCFS who had co-morbid or previous psychiatric history were more likely not to recover. Spencer reacted angrily to this saying ‘how can you do this to a professional… ‘
Ann Keen turned up just after 5.05pm. MP for Brentford and Isleworth since 1997 she had spent 25 years in nursing and worked with people with long term disabling conditions; she had seen ME first-hand and said she was aware of the problems patients faced (1) the need for early diagnosis (2) unsympathetic GPs (3) the lack of medical education (4) research or the lack of it – including epidemiology.
Point 4 – Good. I will drop Ms Keen a line thanking her for her interest but ask exactly what she is doing to affect this.
On the question of nomenclature, Ms Keen was comfortable with describing ME as neurological. And there was no objection to the term from the neurologist who was with her.
Willows made some points re. existing services as did Christine Harrison (BRAME). There were also comments on the proposed new service in Kirklees West Yorks. Colin Barton Sussex said most services are OK but need expanding; Joy Birdsey replied, ‘what planet are you on’? (Ed. we don’t get good reports on services in Sussex. Far from it). There was talk of setting up a meeting with Lord Darzi, Under Secretary of State at the DoH re. services.
Disclaimer: The above is compiled from mine and others’ scribbled notes. I cannot guarantee 100% accuracy.
Exchanges at recent meetings reflect divisions within the British ME Community. As ever, a few say, ‘sort it out and unite’. Unfortunately, it’s not that easy. There is a lot of history…
One of the tragedies of ME in the UK is that those organisations originally set up to represent people with ME have never been up to the task. Instead of doing just that, those who run them appear to be primarily motivated by (1) self-interest and (2) in a related way – often working on flawed projects with public officials and the Government which funds them. But it goes deeper than this; they have let us down so badly. Unwisely, the aforementioned have colluded with the Government in projects which were never about G93.3 ME but loosely defined CFS. The results in terms of diagnosis, treatment, research and welfare for ME patients are clear to see. Take the CMO process/Report; this was not about G93.3, and ME patients are now suffering its results in terms of services. Time and again, ME people contact me and say, ‘but this is not about ME’. Please note that a number of ME parties, notably the 25% Group, would not sign; the latter’s reasons were to do with the fact that it didn’t recognise G93.3 and recommended psychiatric models of treatment ie GE/CBT.
The APPG then, primarily a vehicle for promoting Govt policy, had ready-made allies at its inception 1999. The influence which the MEA and AfME have within the Group is totally disproportionate to the size of their memberships, which have plummeted in recent years (they probably wouldn’t represent 5% of ME patients currently).
RiME is about G93.3 ME. A person said to me recently ‘can’t you find middle ground with the likes of AfME… ‘. I tried to explain that this was not possible. In order to do that, RiME would have to shift away from the G93.3 classification and the Canadian Criteria which describes a neuro-immune-endocrine-vascular illness. I’m not prepared to do that and say to such people, ‘don’t ask RiME to be less than what it is’.
One difference between us and the likes of AfME, MEA, AYME… is our view of ‘CFS/ME’ services. We believe that the large majority with G93.3 ME don’t want them; they say vica-versa. There is a difference, though; our position is backed up with no fewer than 20+ pages of evidence (see website – clinics + letters); where is theirs? I made this point at the July ’07 meeting; needless to say, it was omitted from the minutes. I wrote to AfME + MEA again on this Oct. 2007 (clinics folder – letters to MEA, AfME); they haven’t replied.
Meantime, what about research? It has barely featured at recent meetings. Are MPs being misled into thinking that ME patients are getting effective treatment via the clinics and, therefore, it is not urgent? This is what they might think reading the manipulated APPG minutes? Shortly, RiME will be launching the RiME Referendum: a letter will go to each of the 646 MPs asking whether or not they think the Government should be funding research into the aetiology and pathogenesis of ME. I hope (health permitting) to report the results at an APPG meeting, and ask what the APPG is doing in this area.
We welcome unused postage stamps.