“ A summary of the key clinical issues”

The Chief Medical Officers report and recommendations announced in January 2002 was some 150 pages long. Only a few thousand copies were produced and although you can download it from the internet it is a weighty tome and not many people with ME or Health Professionals would wish to or have time to digest it.

After the first flurry of media coverage we have moved on a little way; the Medical Research Council report and “highlighting” of areas of research recommended (January 2003). The Medical Research Council also introduced the two long term studies on pacing (PACE) and nurse intervention (FINE) (May 2003). And the announcement of Department of Health funding of £8.5m over 2 years (2004/5) for delivery of clinical services. (This latter initiative is covered elsewhere in Focus)

Action for ME produced a very useful 8 page guidance for doctors and circulation figures are around 20,000 All GP practices received a copy and we in the North East as well as other local ME groups have ensured broader circulation via Primary Care Trusts and local networks.

However, we felt that getting the message across to GP’s (and patients) we needed something easier to read, a diagnostic tool and a treatment/management strategy. Led by John Crichton (a working volunteer) and using only information available in the Chief Medical Officers Report we have produced one A4 card summarising all the issues. We are preparing to produce it on a varnished card to give it a level of durability and we wish to make it available to every GP and health professional dealing with ME as well as all our members.

To achieve professional recognition for this work we have sought advice from several key people in the ME world including; Dr Charles Shepherd, Professor Anthony Pinching, Dr Betty Dowsett and Dr Nigel Speight. The document has now been circulated to all our MP’s, all Health Ministers and to Sir Professor Liam Donaldson Chief Medical Officer seeking endorsement. We have had very encouraging replies from several MP’s (see pages 8 and 9). Sir Liam Donaldson wrote saying: “The ownership of the content of the report lies with the Working Group and it would be therefore more appropriate for the Chairman of that group Professor Sir Allen Hutchinson to be approached to consider your request for endorsement” we immediately wrote to him and we await his response.

We will be seeking funding for wide circulation of this document and hope to go to print before the end of the year. All members will receive a copy and we will make more available to those able to extend circulation within their localities. We will update you in the December newsletter.

Quotes From Key People
A summary of the “Key Clinical Issues”

We are now in regular contact with MP’s across the North East, all receive our newsletter and updates on work in progress. The latest information circulated were details of our diagnosis/treatment guidelines for GP’s “A summary of the key clinical issues” and asking for their collaboration to achieve endorsement from the Department of Health.

We show here the level of support we are receiving. It is encouraging to know our MP’s are representing us and share our concerns about services for ME.

Not all have responded some merely acknowledged receipt of correspondence - we will be taking this up over the coming weeks

Derek Foster MP Bishop Auckland

“ Your organisations representations to Professor Sir Liam Donaldson have my full support"

John Cummings MP Easington:

“ I will follow developments with interest and thank you for writing to me on this important issue”

John Burton, Agent to Right Honourable Tony Blair MP:

“ I note that local GP’s have given their support to the framework and I hope your request to Sir Liam Donaldson gets a positive reply”

Doug Henderson MP Newcastle North

"I have always taken a keen interest in development in ME”

Gerry Steinberg MP Durham:

“I very much support the crucial service offered by ME North East. I also support the service framework you have produced and have conveyed my support to the Chief Medical Officer”
(2) “Having received the response to you from the CMO I have taken the opportunity to write to Professor Allen Hutchinson Chairman of the Working Party Group

Ronnie Campbell MP Blyth Valley:

“ I have always been a strong supporter and will continue to do so in the future”

Jim Cousins MP Newcastle Central:

“I very much welcome the CMO’s initiatives on the clinical aspects of ME, I wish your initiative every success”

Peter Atkinson MP Hexham:

“I am aware of the valuable work undertaken by your organisation, naturally I support your efforts and would like to meet with you”

Kevan Jones MP North Durham:

“I think it is an excellent idea and has my full support in raising the awareness of ME amongst health care professionals”

Dr John Preston GP, Chair Executive Committee
Durham & Chester le Street Primary Care Trust

The document you have produced is excellent. It is a brilliant summary that seems to include just about everything a normal GP would wish to know. I was particularly impressed with the differential diagnosis part and especially glad you remembered connective tissue diseases, which are easily missed. The only criticism I would make is that we feel the evidence for CBT is a bit stronger than your leaflet indicates, and in fact feel it is one of the few interventions that have any real evidence at all. (Accepting that it’s real success rate is not that good).