CPG on ME-CFS

The Cross Party Group in the Scottish Parliament.

The majority of the work of the Cross Party Group continues to be on investigating Managed Clinical Networks, Discussions about a Centre of Excellence and on feedback and discussions about the Scottish Good Practice Statement as well as ways to Increase awareness of the promotion of scientific developments around ME.

A meeting of the Cross Party Group took place on Wed 18th November 2009.

This meeting also included the Annual General Meeting which had been held over from previous meetings due to lack of MSP's attending.

Andy Kerr opened the meeting and was joined by Alex Fergusson (The previous Chairman of the group and now Presiding Officer of the Scottish Parliament) and Charlie Gordon, our local MSP. Andy proposed that he dealt with the AGM and approval of previous minutes whilst Alex Fergusson and Charlie Gordon were available.

Nominations to the Committee had already been received and were approved by the meeting.

Minutes of the September meeting were approved but there were some points relating to the May minutes which required some additional clarification.

We were then given a Presentation of Results of research by Dr Susan Hagan of Glasgow Caledonian University, in which she discussed some promising findings from her research, which indicates Potential Biomarkers in ME/CFS and which backs up previous research in this area. Unfortunately funding for her work runs out in April 2010, and the results of applications for additional funding will not be known until early next year.

We were also given a presentation by Dr Marilyn McNeill on the recent discovery of the Human Retrovirus XMRV and its implication for ME sufferers. Marilyn, who is a member of the Cross Party Group, did a literature search on this discovery and also looked at how the research had been performed and reported.

She was of the opinion that the research was of good quality and that the results were very significant. It was her feelings that whilst the virus had been found in ME patients in the USA it was important to conduct research for the retrovirus on patients in the UK. The meeting agreed and the Group will write to the MRC with this recommendation.

Further information on the work and composition of the group can be found at:http://www.scottish.parliament.uk/msp/crossPartyGroups/groups/cpg-me.htm

The next meeting takes place on Wed 13th January 2010.

Needs Assessment.

At the request of the Scottish Government, the Scottish Public Health Network has undertaken a Health Care Needs Assessment of Services for People Living with ME-CFS and its findings will inform the NHS in its planning of future services. The needs assessment has been subject to widespread stakeholder involvement and formal patient scrutiny, and was available for national consultation until September 2009.

Further details can be found on ScotPHN’s websitehttp://www.healthscotland.com/resources/networks/scotphn/projects/CFSME.aspx .

Scottish Good Practice Statement and conference

Good practice in ME-CFS, the conference to launch the Scottish Good Practice Statement, was due to take place in Glasgow, 9 September, but has been postponed because of swine flu.

Concerns were raised after reports that GP surgeries could be overwhelmed with patients as swine flu spread and vaccinations became available.

Dr Gregor Purdie, lead author of the Statement, Will Scott, Long Term Conditions Unit, Scottish Government Health Directorates agreed that a conference for GPs is unlikely to be well attended until the pandemic has passed. There would also be concerns about any risk to the health of people with ME attending the event.

The delay, although unfortunate, does allow more time for medical peer review, which has not progressed as quickly as hoped. So far the Statement has been through three rounds of consultation and Dr Purdie has made substantial revisions at each stage.

The Statement was sent to a number healthcare professionals, academics and professional bodies in Scotland for consultation. It was also available as a press proof copy at an event in the Scottish Parliament during ME Awareness Week.

The professional peer review reference group will be asked to focus on how to make the Statement as useful as possible to GPs, in particular by looking at the inclusion of a diagnostic and/or therapeutic algorithm - a stepped series of instructions - probably in the form of a diagram, which may also form the basis of a laminated reference card. 1

1Cathcart ME Support Group. Reports. Committee Overview 2009 http://www.cathcartmesupportgroup.org.uk/2.html