RiME: Summary of APPG on ME meeting: 12 July 2007

Campaigning for Research into ME (RiME)
Summary of APPG on ME meeting: 12 July 2007

The main speaker was Dr Terry Mitchell. Dr Mitchell, who used to work at the James Paget Hospital Norfolk with ‘CFS/ME’ patients, talked about his experience in that field. He used terms like ‘fatigue’ and ‘post-viral fatigue’. He said both he and his patients were originally naive and that patients were treated ‘holistically’. He also mentioned ‘anxiety’, ‘boom and bust’, and that some benefited from CBT. He said that the original £8.5 2003 – to be spent over 2 years – had been reduced 2006-7 to 5.24m, and that has affected services in the Anglia region.

When I asked about admittance criteria, his reply suggested that there was none. He said patients were referred via GPs; he said they had looked the Canadian and CDC Criteria and, if I remember correctly, said something about them being similar. I said they’re not.

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

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 therapy 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…. ‘

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 its website, no fewer that 20 pages (RiME letters Sept ’06 – July ’07).

Jill Piggott West Midlands ME Consortium criticised the way in which the CNCC Collaborative is placing too much emphasis on psychological aspects. She condemned the proposed agenda for the forthcoming collaborative conference, especially the way it is dominated by the psychosocial approach to management.

Doris Jones 25% Group made reference to RiME’s account and said she wanted it put on record – on behalf of the 25% ME Group – that, apart from the Norfolk clinic under Dr Terry Mitchell, experiences of members of this group at most other clinics were very similar to those which RiME described.

Many letters and emails were sent to the APPG Chair prior to the meeting. They raised concerns about the clinics and their authors asked they be included by proxy. None were. (Examples in RiME letters July ’07).

Christine Harrison BRAME and Barbara Robinson East Anglia ME Network said the services provided by Dr Mitchell and his staff were appreciated by persons in East Anglia. ‘An oasis in the desert’ was one term used.

Annette Barclay asked what impact the NICE Guidelines (more GE/CBT… – ed.) would have on NHS clinical services and to what extent their guidance would be mandatory.

John Bercow MP said a Commons adjournment debate might be sought in the future but not this term. Dr Turner agreed.

Sir Peter Spencer AfME was appalled by the lack of MPs at APPG Meetings and said the absent members showed ignorance, prejudice and sheer injustice to PWME.

Des Turner MP + Chair said there was a deteriorating situation re. ME treatment, and that the budget should be increased in that respect. He mentioned changes at the Health Dept (Alan Johnson, new Secretary of State, Ben Bradshaw – ME remit). He said a minister would be invited to the next meeting. I got the impression that the clinics would be the main item on the agenda. I asked that the issue of ME research be discussed.

NB A colleague who has done sterling ME service in the face of great adversity asked me to read out a statement (there wasn’t time july 12, so I do it now). Sheffield: The former Chair of the North Derby group with 250 members condemns the Sheffield Clinic. Sent info. which showed the treatment involves CBT, ‘I can’t relate to this at all… ‘

Disclaimer: the above is based on scribbled notes and others’ recollections of the meeting. I cannot guarantee 100% accuracy.

Overview

The arrangements for the meeting were quite bizarre. The speaker Dr Mitchell was someone who (1) had addressed the APPG before (2) no longer works with ‘CFS/ME’ patients at the James Paget Hospital. Wouldn’t it have been more useful to invite a couple of doctors from other parts of England who hadn’t previously addressed the APPG and who were currently working with ‘CFS/ME’ patients.

A number of people from East Anglia were present. It would appear that they want the current services, there, to continue. One party sent a letter to members of the APPG in May. The letter, which refers to biomedical services in East Anglia, appeals for further funding for the clinics (the letter also mentions services in other parts of England with a similar appeal).

Current services in Norfolk and Suffolk appear not to be about ME but Chronic Fatigue. A document entitled ‘Waveney Primary Care Trust – Norfolk and Suffolk Chronic fatigue Service’ says:

Front page: Recommendation… the transfer of the remaining staff working within the Chronic Fatigue Service from The James Paget Healthcare NHS Trust to Waveney PCT. The.. Executive Committee has agreed this is best for the clinical care of patients…

1 Introduction: …. Patients are assessed by a medical practitioner at either The James Paget or Northgate Hospitals before starting on a program of therapy led intervention aimed at helping the patient to better manage their own condition….

4.2 Staffing: The Head of Intermediate Care and Rehabilitation is responsible for the service which is led by a Specialist Occupational Therapy Practitioner….

Appendix 1 New Service Model: 1 Reduced medical follow-ups 2 Group intervention rather than individual 3 Enable GPs to better support their own patients 4 Patients discharged once goals have been met…. Moving to a therapy-led service….

The document does not mention the terms ME or biomedical.

Another piece ‘Health News’ Jan/Feb 2007 is on the Great Yarmouth and Waveney PCT website –

Dance Classes, badminton, tennis, Pilates, chair-based aerobics, t’ai chi, golf and yoga. These are just some of the physical activities that the 27 GP practices across Great Yarmouth and Waveney will be recommending their patients take up in 2007.

And these patients have one thing in common – they have a chronic (long-term) condition such as arthritis, MS, CFS (sometimes known as ME) or fibromyalgia…

Paul Price, Physical Activity Lead for Great Yarmouth and Waveney PCT…. ‘The aim is to focus on a person’s ability rather than disability and to help them develop a positive mind-set….’

…. As well as the physical benefits, people also gain by getting out of the house and meeting other people which, in turn, gives them more confidence….

If delegations who purport to represent people with neurological ICD-ME (the G93.3 code was recognised by the APPG Nov. 2006) want to go Westminster re. the Clinics issue, I think they should think carefully as to whom they are representing and what they are doing.

The overwhelming feedback RiME gets is negative; this includes ME patients in East Anglia eg:

King’s Lynn: … I think the Norfolk PCT is a load of pants as far as neurological ICD-ME is concerned.

There is currently no specialist residing at the Great Yarmouth ‘Chronic Fatigue’ Centre but that’s no loss as these centres were developed for people with chronic depression by a psychiatrist working outside this field, and cannot address the needs of ME patients.

Dance classes, badminton, tennis… being recommended… Obviously they don’t know that ME and CFS are not the same and that exercise is very dangerous for people with ME…

I’m afraid to say that my experience re. APPG meetings has been quite depressing. It would appear to be primarily a vehicle for rubber-stamping Govt policy. Anyone who dares to voice dissent is usually either attacked during or after meetings or humoured. Its current objective seems to be endorsing the bit of chicken-feed which the Health Dept is investing in clinics which predominantly offer more GE/CBT modes of treatment. Biomedical research has not featured at recent meetings. Unless more (those who can) get active and vocal and quickly, it will continue to be same old, same old…

There will be a newsletter in the autumn, health permitting. RiME welcomes postage stamps.

RiME is unable to answer emails at present because it is experiencing computer problems.

Paul Davis
07 August 2007
Email RiME
RiME

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