Initial response of the ME Association to the new Scottish Good Practice Statement on ME/CFS

September 3, 2010

The Scottish Good Practice Statement on ME-CFS (SGPS) was published on Wednesday September 1 on the Scottish Health Department's website, Scottish Health On the Web as three downloadable documents:

Scottish Good Practice Statement on ME-CFS

Quick Reference Clinical Guide

Patient Guide: What someone should know if they or their doctor think they might have ME-CFS

The ME Association will produce fuller comments on the SGPS when we have had time to carefully read through all the material. Meanwhile, here are some background notes.

Before and after the last Scottish election, the Cross Party Group in the Scottish Parliament on ME (CPG) considered its progress and future strategies. One clear aspect was the dearth of professionals involved with ME & CFS in Scotland and the barrier that posed to progress in developing understanding and practice.

Another strategy since the conception of the CPG had been to press the Health Minister for a Needs Assessment. The minister had already agreed to that being taken forward, and the imbalance in available professional opinions between practitioners who recognise ME and those with a bias towards a limited view or CFS became clearer as that project developed.

Trying to initiate a Continued Professional Education (CPE) module was one obvious remedy, but that could allow others with more resources to develop an alternative module. If clinical guidance which recognised ME as the central premise for developing practice could be recognised and distributed by NHS Scotland or the Health Department, that would have a much greater chance of success and could better support a consequent CPE module.

Dr Gregor Purdie, GP Clinical Lead for Dumfries & Galloway NHS Board, and a regular participant in the CPG, got the support of the Deputy Chief Medical Officer for Scotland to develop such a clinical guide. At the outset, it was recognised that the level of evidence and clinical reporting available was below the level at which formal guideline development processes become constructive, so the advice had to be based on central principles of medical education and practice.

For a professional audience – primarily of GPs with varying degrees of prior understanding of presentations related to chronic fatigue – it was recognised that the advice had to be comprehensive, clearly-stated, objective, and applicable from limited to full diagnostic investigation and treatment, of both cases which appeared to be ME and less clear cases of CFS. Clear reasoning for inclusion of advice and particularly for selecting from options, expressed in language which would convey both specific meaning and wider context to GPs would be required to efficiently cover the range of information for the relatively complex range of presentations of ME and CFS.

To inform the writing process, stakeholders representing practitioners, service providers and patients were recruited to suggest content and comment on draft text. Existing clinical descriptions and research criteria were considered, including the MEA's booklet, ME/CFS/PVFS – An exploration of the key clinical issues, and trustees Dr Charles Shepherd and Ewan Dale both contributed to the development process.

Although the final draft achieved by Spring 2009 was not as successful as originally hoped, and attracted criticism from some professional and patient stakeholders (for opposing reasons), it was generally accepted that it could usefully go forward, and the only outstanding element for the satisfaction of the Health Department, who had funded the process, appeared to be the commentary requested from the Scottish Royal College of GPs (RCGP). Having failed to recruit a member to provide a commentary, RCGP Scotland approached their colleagues at the RCGP in London, and this resulted in a negative review of the document, which led to its publication being rescinded.

In an effort to take the project forward in a manner which could still result in a reasonable document which adequately represented ME, Dr Purdie approached Dr Lewis Richie, a GP and Professor of General Practice at Aberdeen University. He agreed to get involved and, after discussing the matter with the Health Dept, formed a small professional committee to review and redraft the SGPS. With a lack of willing doctors experienced in ME to recruit from, and the need to include at least one representative with comparatively limited views on CFS, Prof Richie managed to maintain some balance in his committee, and made clear efforts to retain the views of patient representatives, though a larger number of professional reviewers were also called on.

However, the very things which had originally been seen as necessary to avoid, had now became entrenched in this review – the dilution of recognition of ME compared to CFS, and the process-driven evaluation of ‘evidence' with the inevitable devaluation of long-developed clinical understanding compared to often poor-quality CFS research findings.

So, compared to existing sources of guidance on ME from outside the NHS, this documentation does not represent ME very well, and has generally followed a similar pattern of compromise as previous London-based processes – the last being the NICE guideline. To what extent these documents retain substantial improvements on NICE remains to be seen, and they do offer a more flexible potential for future updating, but they are a decided disappointment compared to the original intent, and after all the effort put in by Dr Purdie and others.

Ewan Dale, Trustee, The ME Association

3 September 2010

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