Sue Webber MSP‘s Motion in the Scottish Parliament highlighting ME, its symptoms, and in particular the findings of the yet to be implemented 5 July 2022 ‘Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline’ has secured 58 signatures and, most importantly, cross party support. Such support meant that it would be looked upon more favourably by the Parliamentary Bureau when deciding whether the motion should be debated in the Chamber.
Reports are that a debate will be held in the chamber on Thursday 2nd February 2023 from 12:45-1:30pm. The debate would follow First Minister’s Questions and so take advantage of the large numbers of MSP’s who normally attend First Minister’s Questions.
The Motion was thus
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.Scottish Parliament Motion ref. S6M-061