On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various petitions, including #MEAction’s petition: PE01690 Review Treatment of People with ME in Scotland. Submitted by Emma Shorter, on behalf of #MEAction Scotland, in June this year, the petition called on the Scottish Parliament to urge the Scottish Government to review the level of support for people with ME in Scotland.
Specific aims included discontinuation of CBT/GET, provision of specialist care for patients, investment in biomedical research and ensuring healthcare professionals’ training and education reflected the most recent scientific evidence.
Following the June submission, the Petitions Committee invited comments and evidence from a wide range of stakeholders and public bodies. The reaction of the committee to the responses received was very encouraging and they have now decided to invite Cabinet Secretary for Health and Sport, Jeane Freeman, to give evidence and discuss key issues.
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In her introduction, committee convener Johann Lamont remarked that the responses received appeared to justify the concerns expressed by the petitioner about an ‘inconsistency of approach, or awareness, across health boards’. She also mentioned that the submissions received from individuals regarding their experiences of deterioration following CBT/GET ‘appeared to be supported by stakeholders including Science for ME and Action for ME’.
She admitted to being struck, both by the number of responses received and the powerful arguments which they advanced. She also made particular mention of the evidence submitted by Professor Jonathan Edwards of UCL regarding the ‘building in’ of bias to studies such as the PACE trial, which claim to provide evidence for the efficacy of CBT/GET.
Petitions Committee Deputy Convener, Angus MacDonald, highlighted a survey of GPs, carried out by Action for ME in 2010, which showed that 82% of GPs surveyed had undertaken NO training on ME whatsoever and a ‘staggering’ 66% were unaware of the existence of the Scottish Good Practice Statement.
He supported the suggestion that the Cabinet Secretary for Health and Sport be called to appear before the committee to give her view on provision of services, particularly in the light of the Scottish Government’s failure, highlighted by #MEAction Scotland, to pick up a number of recommendations made by the Scottish Public Health Network (ScotPHN) in its 2010 healthcare needs assessment on ME.
In drawing the meeting to a close, Ms Lamont recalled the ‘scepticism’ that she remembered surrounding ME when she was a younger woman and commented on the fact that experience of such disbelief featured very strongly in the evidence submissions. It was, she suggested a question to ask the Cabinet Secretary: are Health Board responses and provision informed by that thinking still? And to what extent do the Scottish government recognise that that’s a problem?
#MEAction Scotland are pleased that the Committee recognises how serious the situation is and hopes that the meeting with the Cabinet Secretary will lead to positive, lasting change. People with ME in Scotland have been trying for years to effect change and we are grateful for their continued campaigning and support, which has provided us with a solid foundation for these most recent efforts.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the