RiME: Concerns re Minutes of APPG on ME, July 2007

Campaigning for Research into ME (RiME)

RiME’s concerns re Minutes of APPG Meeting 12/7/07

The minutes for the above meeting were written by AfME (with the help of the MEA); then approved by the Chair. They are totally unacceptable in their current form and RiME has, accordingly, emailed and written to the APPG Chair with copies to AfME and MEA – see below. If you are also concerned, why not write to the three parties yourself; please send us copies.

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Dr Des Turner MP
House of Commons
London, SW1A OAA

turnerd@parliament.uk

Nov. 8 2007

APPG Minutes 12/7/07

Dear Dr Turner,

First, according to the minutes the Chair Dr Des Turner said:

‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’.

This sentence is poorly written in that it is unclear as to what ‘the letter’ is. I think it is probably the letter from the leader of the Norfolk Group. I don’t recall the Chair saying this, nor do others who were present. Accordingly, RiME is writing to all three parties (APPG Chair, AfME + MEA) asking if they are absolutely sure the statement was made. If I remember correctly, the Chair said something along the lines that there seemed to be some doubt over the veracity of the comments expressed in the letter.

What I read out on behalf of the leader of the Norfolk Group is below.

Here is my oral statement 12/7/07:

Paul Davis (RiME) said that the overwhelming feedback from ME patients re. the clincs is negative eg:

Chair of Norfolk Group said they now have a ‘ ”CFS service”, which according to the Chief Executive of Norfolk PCT, ” … incorporates a mix of GPs with a Special Interest, enhanced threrapy input and access to other specialist input such as CBT” … It is clear that the general feeling in this part of the country is that anything other than biomedical treatment and/or research where ME is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to ME sufferers at worst’.

The leader of the Manchester Group says a psychiatrist, who deems ME a psychosocial illness, is the Champion of the Manchester CNCC. He is also Chair of the whole English CNCC set up. Representations from Manchester ME Group rejected.

Birmingham: The B’ham Group broke off dialogue with health authorities July ’05 – assurances had been given by S B’ham LMTD that ME/CFS services would operate independently from the psychiatric. This was not the case. A survey to ME attendees produced many zeros.

Leader of Winchester + Eastleigh Group: ‘ …they call this (Southampton Clinic) the ME/CFS clinic when in reality it’s the Hants.. Chronic Fatigue service…. We are meant to be reassured that the S’ton Clinic is modelled on the Wareham Clinic in Dorset. From correspondence.. from PWME… I’m not… Wareham seems to show a strong psychiatric bias of it’s own….

The leader of the Kent Group wrote to APPG chair recently, ‘I attended the CBT clinic in Maidstone… it offers nothing to those with neurological conditions like ME… members feel the money would be better spent on biomedical research…. ‘

(There are other examples…. )

Common themes running through letters: ME patients (1) would prefer to see the £8.5 spent on biomedical research (2) suspect results will be skewed (imprecise admittance criteria) and used by the Govt as an excuse not to research the physical causes of ME.

RiME’s position contrasts with that of AfME/MEA but there is a difference. RiME’s is backed up with evidence – on it’s website, no fewer that 20 pages (www.erythos.com/RiME – letters Sept’ 06 – July ’07).

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Corroboration:

a. I sat next to Paul Davis 12/7/07 and took notes. I don’t recall the Chair saying ‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’. The above is what Paul said. Joy Birdsey, Kent.

b. I was at the back of the Committee Room and taking notes. I don’t recall the Chair saying ‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’. I do recall Paul Davis trying to read out the comments of five English Group Leaders. Annette Barclay, London.

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Contrast this to what is in the official minutes: with the exception of a question I asked Dr Mitchell re. admittance criteria, this is what I reportedly said:

‘Paul Davis read out a letter from the Norfolk Group which listed dissatisfaction with CBT-led NHS specialist services amongst local support groups in Norfolk, Manchester and Winchester and Eastleigh, adding that money would be better spent on biomedical research’.

RiME’s reported statement was (1) inaccuratre (2) ‘selectively edited’. Consequently, RiME asks that the minutes be amended and it’s contribution edited in full. This is necessary since (A) I was reading out the comments of five Group leaders (B) we feel that people should be invited to read the comments on RiME’s website. The minutes then need to be redistributed to all those parties they were originally sent to.

Many appear to be of the opinion that the minutes were edited in such a way as to try to send out ‘a positive message’ (erroneously in their opinion) re. the clinics.

Yours Sincerely,

cc:

Heather Walker AfME Floor 3 Canningford House 38 Victoria Street Bristol BS1 6BY Heather.Walker@afme.org.uk

Tony Britton MEA 4 Top Angel Buckingham MK18 1TH tbritton02@yahoo.com

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