Sue Webber, MSP for Lothian, submitted a motion on 03 October (ref. S6M-06112) to the Scottish Parliament that is seeking support for the stakeholder review on ME/CFS (published in July) which aims to improve medical knowledge and awareness of ME/CFS and develop specialist healthcare provision for people in Scotland. We would be grateful if you could approach your MSP – we have written a template email you might like to use – ask them to sign the motion and demonstrate their support for people with ME/CFS.
“That the Parliament notes that the Scottish Government commissioned and welcomed an independently-produced stakeholder review of the NICE guideline on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), published on 5 July 2022; further notes that the review states that myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a complex chronic medical condition affecting an estimated 250,000 people in the UK and that around 20,000 people in Scotland are living with the condition, including in the Lothian region; highlights the four key symptoms characteristic of the condition, which are debilitating fatigue that is worsened by activity, post-exertional malaise (PEM)/symptom exacerbation, unrefreshing sleep and/or sleep disturbance, and cognitive dysfunction, and which affect multiple physiological systems and can fluctuate from mild to very severe in individuals and across the population affected; understands that the review recommends consideration be given to identifying the most effective approaches to improving GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme, and further understands that the review recommends that pilot services should be funded in a selection of NHS boards to test the development of specialist services with patient involvement and third sector collaboration embedded in the design.”The Motion: Scottish Government Commissioned Review of ME Services and Future Action
Current status: Achieved cross-party support
MSPs who have supported the motion to date
Jackie Baillie, Claire Baker, Jeremy Balfour, Miles Briggs, Alexander Burnett, Donald Cameron, Foysol Choudhury, Sharon Dowey, Pam Duncan-Glancy, Russell Findlay, Murdo Fraser, Pam Gosal, Jamie Greene, Dr. Sandesh Gulhane, Jamie Halcro Johnston, Rachael Hamilton, Craig Hoy, Stephen Kerr, Monica Lennon, Douglas Lumsden, Fulton MacGregor, Roz McCall, Stuart McMillan, Jenni Minto, Edward Mountain, Emma Roddick, Douglas Ross, Alexander Stewart, Paul Sweeney, Annie Wells, Tess White, Brian Whittle…
Dear [Name of your MSP],
Please join your colleagues and show support for ME/CFS healthcare improvements in Scotland
I live in [WHERE YOU LIVE] and am a constituent. I would be grateful if you could sign the motion initiated by Sue Webber that seeks parliamentary approval and a debate on the issues raised in a stakeholder report on ME/CFS that was published by the Scottish Government in July.
This report seeks to improve medical education and raise awareness of this devastating neurological condition, and to see the recommendations made in the NICE Clinical Guideline on ME/CFS implemented in Scotland.
ME/CFS affects an estimated 22,000 adults and children in this country. It shares similar symptoms and has a similar impact on functional ability as the estimated 192,000 people with Long Covid. In fact, for the majority of people with ME/CFS, the trigger was also a viral infection that has led to long-term disability.
Healthcare provision for both groups of patients in Scotland is non-existent, and it is vital that the NHS and social care services officially recognise the problem and provide specialist services to help people like me learn how to best-manage their condition and to feel less isolated and alone.
[INCLUDE BRIEF SUMMARY OF YOUR EXPERIENCE OF ME/CFS]
I hope, with your support, this motion will lead to a parliamentary debate and that the NHS and social care services in my country will initiate positive change.
[YOUR FULL NAME]
[YOUR FULL POSTAL ADDRESS]