Scottish Cross Party Group on ME, January 23 – notes on discussion

January 26, 2008

Having previously been commissioned by the health department to produce guidelines on CFS/ME for Scotland but not having completed the commission, Action for ME (AfME) have received a revised commission to produce guidelines by the end of the financial year (31 March 2008).

Carol Flack was engaged in December to carry out this task, and met the committee of the Cross Party Group on ME  (CPG) in December as part of her preparation.

Dr Gregor Purdie had intended producing such guidance as part lf his proposals for services for ME & CFS sufferers in Scotland, and, having previously discussed the parameters with SIGN and other interested medical agencies, is cooperating with Carol Flack in realising this project.

Contacts have been made with most potential participants in the three reference groups envisaged as commenting on and guiding the development of the guidelines (GPs, specialists & patient representatives) though this remains incomplete and

some professionals have indicated their inability to participate in the restricted time-scale.

To meet the first stage of the intended 3-stage development of drafts for the guidelines, Carol Flack put together a rough first draft using the existing AfME guidance booklet and other sources she had. This was circulated on Tuesday 22 in advance of the CPG meeting on Wednesday 23 and February 4 was given as the date for submission of comments.

CPG Meeting. The first full meeting of the CPG in this parliament was on Wednesday 23r Janyary 2008. The meeting was advised that the scoping exercise commissioned from AfME by the Health Department had been completed and would be available onthe AfME website soon. Also, the Needs Assessment had started and was intended for completion in July.

Gregor Purdie and Carol Flack assured the meeting that the first draft was not intended as the main basis for development of the GP guidelines, but only as a start to the process. Patient representatives stated that the timetable was too short to expect sufferers to manage proper participation, and it was agreed that an extension would be sought from the Health Dept. However, it was pointed out that an extension to the completion date would not necessarily include the extra funding required to extend the work involved.

Concern was also expressed about those intended members of the reference groups who hadn't yet been successfully recruited, and Gregor Purdie will try to make direct contact with those and elicit their participation. A further concern was

expressed that hurriedly-produced guidelines would not surpass the standards of existing guidance, which could be licensed and distributed by the Health Dept – possibly at less cost.

The next full meeting of the CPG is set for 23 April 2008, which is after theexisting deadline for the completion of the guidelines, so the CPG committee members will presumably be the main source of information to patient groups without direct access to a member of the reference group.

NB: These notes were made by CPG member Ewan Dale and first circulated in the newsletter of the Glasgow West ME Support Group. They are not the official minutes of the meeting.



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