Sue Webber MSP has launched a 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’.
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-06112
The Report stated that the following areas were highlighted by repondees to the consultation process as being particularly significant in the 2021 NICE guideline:
- Recognition that people with ME/CFS have experienced stigma and disbelief from the medical profession and validation that ME/CFS is a complex multi-systems condition.
- Non-use of Graded Exercise Therapy (GET) – highlighted as a ‘massive step forward’ by the ME/CFS community.
- Re-purposing of CBT – now changed to a supportive approach for living with a chronic condition, rather than positioned as a curative.
- Specific reference to severe and very severe ME/CFS and to children and young people in the guidance was welcomed.
- The emphasis on co-production of management and that people are the experts in their own care was acknowledged.
- Stakeholders welcomed the guidance’s improved diagnostic criteria and aspirations for specialist care.
with the Report recommending
- The Scottish Good Practice Statement be updated to reflect the changes within the 2021 NICE guideline (NG206).
- There is a visible commitment to supporting the key changes within the guideline, to help end the scepticism and disbelief.
- The publication of the revised SGPS is accompanied with promotional activities and awareness raising.
- Consideration is given to the most effective approaches to improve GP knowledge, confidence and understanding of ME/CFS through an appropriate education programme.
- Pilot services are 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 option of including ME/CFS as a specialist network within the Modernising Patient Pathway Programme is explored.
- More research into ME/CFS is actively encouraged within the academic sector.
The Report indeed had been welcomed by Maree Todd MSP, Minister for Public Health, Women’s Health and Sport in glowing terms.
The Motion is open for MSPs to sign until 11th November. Thus far 55 MSPs (as at 10/11/2022) have added their names from various parties and so it has vitally important ‘cross party support’. The more MSPs who can be persuaded to add their names to the Motion then the higher the likelihood that a debate in the Scottish Parliament will be held.
Motions are short statements written by an MSP and most motions raise awareness of an issue or recognise a group, business or individuals. Some motions can lead to a debate in Parliament but must gain cross-party support. Once such support is achieved then the Parliamentary Bureau makes a decision on whether the motion should be debated in the Chamber.
