Response from John Sayer to Minutes, APPG on ME meeting: 12 July 2007

The Minutes of the meeting of the All Party Parliamentary Group on M.E. held on 12th July 2007 can be read on ME agenda here

Response to the Minutes from John Sayer, Chairman, M.E. Support-Norfolk

Extract from Minute 6. NHS services
Main speaker: Dr Terry Mitchell, regional clinical champion for M.E./CFS in East Anglia

Dr Mitchell described the way in which the service was built up to provide a comprehensive package of care including both diagnosis and on going management via a therapy team.  This is based on a biomedical model with a flexible holistic approach to activity management and appropriate symptomatic management. The service also acknowledges that, as in any chronic illnesses, problems such as depression can also occur.

 

The service worked closely with local patient groups who formed the East Anglian M.E. Patient Partnership Network.

This last sentence is misleading: it makes it sound as if the service worked closely with local patient groups.  The service may (or may not) have worked closely with the East Anglian M.E. Patient Partnership Network, but I can affirm that it has never worked (closely or otherwise) with M.E. Support-Norfolk, one of the groups (incidentally with the largest representation) making up EAME.

This smacks to me of deliberate propaganda, designed to illustrate cooperation between local patient groups and the service.

Extract from Minute 6. NHS services

 

v.  Paul Davis read out a letter from of [sic] 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 the money would be better spent on biomedical research.

 

vi.  A number of people responded saying that services had benefited many and provided a foundation on which to build.  Christine Harrison and Barbara Robinson said that the views expressed by certain individuals did not reflect the consensus. They described the services provided by Dr Mitchell and his team as ‘An oasis in a desert.’

I see no excuse for this blatant misrepresentation in these minutes; “the Norfolk Group” refers to M.E. Support-Norfolk.  I submitted a short comment to the meeting (to Des Turner himself, copy to RiME), which was read out by Paul.  In order to make clear to all what it had said, I posted a copy on various e-lists, including at least one which is read by those involved in the APPGME secretariat, back on 15 July:

John Sayer’s letter to Dr Turner, Chair, APPG on ME:

Dear Dr Turner

I am unable to attend the APPGME meeting on 12 July, but wondered whether you could read out these comments ‘by proxy’ at the meeting, please:

Here in Norfolk, we apparently (and I have to say “apparently”, since it is proving impossible to get a straight answer from anyone on this) no longer have a CFS/ME clinic headed by a consultant, but instead a ‘Chronic Fatigue Syndrome Service’, which, according to Julie Garbutt (Chief Executive, Norfolk PCT) “…incorporates a mix of GPs with a Special Interest, enhanced therapy input and improved access to other specialist input such as cognitive behavioural therapy.”

From my recent enquiries, it would also appear that much of the ‘treatment’ and ‘consultation’ is carried out over the telephone.

It is also clear that the general feeling in this part of the country is that anything other than biomedical treatment and/or research where Myalgic Encephalomyelitis is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to M.E. sufferers at worst.

Regards
John Sayer
Chairman, M.E. Support-Norfolk


Given that this letter went to the Chair of the APPGME, there is no excuse for its text being either misquoted or misrepresented, as it is here.  One can see quite clearly that it had not, as claimed in the minutes, “listed dissatisfaction with CBT-led NHS specialist services amongst local support groups in Norfolk, Manchester and Winchester and Eastleigh”.

Its third paragraph has also been misrepresented by the critics mentioned in section (vi) of the minutes: this paragraph does not refer to Norfolk PCT’s “Chronic Fatigue Syndrome Service”, but to the general opinion of people I have communicated with in Norfolk on the subject of M.E. treatment and research, and reflects the wider opinion in the M.E. community, ie. that

“…anything other than biomedical treatment and/or research where Myalgic Encephalomyelitis is concerned is a waste of time, money and resources at best and actually harmful (both psychologically and physically) to M.E. sufferers at worst…”

– and it is incorrect to state, therefore, that “the views expressed by certain individuals did not reflect the consensus”.

If such a cock-up can occur over such a short letter to the Chair of the APPGME, I dread to think what else is wrong in the minutes that emanate from the APPGME meetings.

John Sayer
Chairman, M.E. Support-Norfolk
02 August 2007 

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