ScotME

19 Milton Avenue, Cambuslang, Glasgow, G72 8BQ

Tel. 0141 583 1023     

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Submission to the Gibson Parliamentary Inquiry

The Group on Scientific Research into Myalgic Encephalomyelitis

 

Ian Gibson M.P.

House of Commons,

Westminster,

London,

SW1A OAA                   

                                                                                                     23rd January 2006

Dear Dr Gibson,

 

Please find enclosed the submission of ScotME to the inquiry being conducted by the Group on Scientific Research into Myalgic Encephalomyelitis. Please note that all issues contained in this submission are relevant to the whole of the U.K.

 

ScotME’s submission comprises

 

·        Heterogeneity of ‘CFS/ME’ - A document highlighting the need to subgroup  patients as  currently diagnosed

 

·        Is Graded Exercise Safe for People with ME? -  Some examples of research findings challenging the wisdom of exercise

 

·        Human Tragedy and the Heart of the Matter - Document relating to the tragic death of a young CFS sufferer in the US with summaries of relevant and revealing research

 

·          WHO Decides? - Information about the World Health Organisation classification system and attempts by British psychiatrists to reclassify ‘CFS/ME’ as a mental illness

 

 

With the exception of ‘WHO Decides?’ – which was written previously by a Co-founder - the enclosed documents were produced by ScotME for the Parliamentary Inquiry. Some of these documents draw heavily on the work of others: this is clearly stated, where relevant.

 

We would also like to draw the attention of the Inquiry to:

·           ‘Which Interventions are Helpful to Patients with ‘CFS/ME’? :  A Review of the Evidence’ - This document reviews the evidence relating to management and treatment, and includes scrutiny of the evidence as considered and assessed by the CMO’s Working Group, as well as examples of biomedical evidence which fell outwith the purview of this Group.  This review was produced by ScotME for the Cross Party Scottish Parliamentary Group on ME and forms part of the Cross Party Group’s submission to the Inquiry.

 

ScotME is a voluntary group of ME patients and carers who seek detailed, authoritative information on ME and related issues. The aim is to share this knowledge and analysis with patients, health and social policy makers and other interested parties. ScotME has expertise in the areas of social policy and research methods and analysis, and will strive to ensure that decisions affecting the lives of ME sufferers are based on the best quality information and understanding. (A copy of ScotME’s Mission Statement is appended.)

 

Please note that this final version of the ScotME submission replaces an earlier version, submitted by e-mail on the 20th December 2005. The earlier version, while substantively correct, was produced in rather a rush in the run up to the pre-Christmas deadline. The enclosed version provides an improved presentation of ScotME’s  concerns in relation to the current status, and future direction, of  scientific research into Myalgic Encephalomyelitis.

 

 

 

Yours sincerely,

 

 

 

 

 

Connie Nelson    (Co - Founder)

Helen Brownlie   (Co - Founder)

ScotME

MISSION STATEMENT

 

 

ScotME is a voluntary group of ME patients and carers who seek detailed, authoritative information on ME and related issues. The aim is to share this knowledge and analysis with patients, decision makers and other interested parties. ScotME will strive to ensure that decisions affecting the lives of ME sufferers are based on the best quality information and understanding.

ScotME also aims to participate in fundraising initiatives in aid of biomedical research into ME, in line with the organisation’s primary objective of promoting greater understanding of this illness through the dissemination of high quality information.

 

 

 

Connie Nelson 

Helen Brownlie

Linda Dunn

Andrew Gardner

Margaret E. Williams

Euan MacPherson