On Wed 5th May 2010, a "Special" meeting was held to discuss the changes to the Scottish Good Practce Statement, following the peer review which was conducted by the Scottish Government Health Directorates (SGHD) using similar methods to those used by the Scottish Intercollegiate Guidelines Network (SIGN).

The first edition was released on ME awareness Day last year and was intended to help GP's treat and advise patients with ME. a number of changes have been made to the document which the majority of the cross party group consider to be unhelpful.

The meeting heard from Will Scott of NHS Quality Improvement Scotland. then from Prof Lewis Ritchie, who told the group that he had previously Chaired 6 SIGN reviews, and his aim was to produce succinct guidance for both the patients and the GP's.

Dr Alan Carson then gave a short introduction to his background which was psychiatric and cognitive effects of HIV, before moving to Edinburgh where he worked under the guidance of Professors Michael Sharpe and Charles Warlow where he developed an interest in functional neurological symptoms.

He currently works as a Consultant Neuropsychiatrist.

The meeting then heard from Dr Nigel Speight a paediatric specialist from Durham, who for many years has been a champion of families with a child or young person with ME or where ME is suspected. He has dealt with 200 cases in the Northern Region and 250 cases around the country.

He mentioned the case of a 9 year old Boy from a good background and said he was clear that the boy would not have chosen to give up his previously active life. He also mentioned some other equally disturbing cases some where child protection orders have been instigated or threatened following disagreements between the family and the child’s medical professionals

He made it very clear that he did not agree with the psychiatric lobby and reminded everyone that the psychiatrists had refused to accept the ruling by Prof Liam Donaldson in January 2002 when the Chief Medical Officer, published his working group report describing Myalgic Encephalomyelitis (ME) as a "real, debilitating, and distressing illness."

The meeting was then opened up to questions from the floor and those who spoke had a very good grasp of the detail, challenging why information was changed, why some references to particular research had been made, where the research numbers had come from, why the document now used the Oxford Criteria rather than the Canadian Criteria. but perhaps the most revealing of all was the admission by Alan Carson that he had used the WHO definition of Chronic Fatigue and not Chronic Fatigue syndrome in his peer review, thus causing a bias towards psychiatric treatments rather than bio-medical ones.

The final word went to Prof Lewis Ritchie, who stressed again that he will do his best and try to bring the documents together

A Follow-up meeting took place on 26th May 2010. where the meeting heard from Mr Will Scott, who indicated that he had received comments from the Scottish Neurosciences Council stating that they could not support the original Document. This necessitated the need to put it out for Peer review. We have been assured that these comments will be made public and will be available for scrutiny.

Prof Lewis Ritchie was asked to chair that review. He set up some sub-groups and Dr Carson, was appointed Chairman of the Clinical Review Group. The meeting pointed out that his group had used the wrong definition of the illness, and had reviewed Chronic Fatigue which is classed under ICD 10 - F48. The implications of this are clear. We can all see that the documents have been amended to reflect this and in effect they now refer to an illness which is not within the the original remit or indeed the Cross Party Group on ME.

The members will continue to try and influence the development of these documents in line with our EXPERT OPINION, as Carers and Sufferers, of what the illness is and how best it should be treated.

Click on the links below to view the draft documents:

ME-CFS Good Practice Statement    Download 1128KB

ME-CFS GP Guidelines    Download 190KB

ME-CFS Patient Guidelines  Download 370 KB

It is the view of the Majority of Patients and Carers who attend the Cross Party Group and who contributed to the Original Good Practice Statement, that these documents have been adversely affected by the comments of a small number within the Medical Profession. Their comments have been circulated and can be viewed here:

The Scottish Neurosciences Council   Download 155KB

Dr Alan Carson Clinical Review Group   Download 111KB

Dr Clare Gerada, An English GP and now Chair of the RCGP   Download  95KB

The Consultation period has now finished and there is concern that If the SGPS is accepted in its present form it will not be fit for purpose and yet another opportunity to improve the treatment and therefore the lives of those suffering from ME will be lost.

Our Group endorse the work which has been done both individually and collectively, by Sufferers and Carers to influence the SPGS. Many detailed and robust responses have been sent and the Documents below highlight the flaws in the current draft document.

Final Comments on the SGPS to Will Scott.  Download 59KB

A document sent as a Joint Response to Nicola Sturgeon. Download 125KB

A special event marking M.E. Awareness Day took place on Wednesday 12th May 2010.

Our Linda McLean spoke at the event and gave a very good account of the difficulties that she and her family faced trying to access treatment for Heather. She left no-one in any doubt about the concern that parents of young people with M.E. have and indeed the poor quality of life which Heather has had to endure for many years.

There was also a display of personal stories and updates on the progress of the Scottish Good Practice Statement for GPs and the Health Care Needs Assessment on M.E.

The meeting was well attended, Andy Kerr and Charlie Gordon were joined by some well known MSP's who dropped in to hear Linda's talk and to offer their support.

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

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 website http://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 2009, but has been postponed because of swine flu. 

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. 

A professional peer review reference group have been 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.

The group reported back to the Cross Party Group at the meetings in May 2010. However, as is detailed above, substantial and damaging changes have been made to the document and Cross Party Group Members are working hard to have these corrected before publication.     

Public Health Partnership Network.

Concerns were raised by members of the Public Health Partnership on a few matters at the New Victoria Hospital. These have been reported but have not yet been attended to.

Glasgow Access Panel.

This group deals with access to Public Buildings and Public Services. Proposed changes to Central Station would mean the roadway leading down to Oswald Street will be removed so that track 12 can be extended and a new track 13 can be brought into the station. This impacts on Car Parking, Pick-up and Drop-Off within the station. The group have heard some proposals to provide Drop-off areas at either Gordon Street or Waterloo Street but no decision has yet been reached.