Due to the fact that the devolved nations in the UK have their own NHS systems, NICE’s Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management guideline does not apply automatically, say in Scotland. Each nation decides on whether and how to implement the NICE guideline in keeping with each nation’s priorities and NHS infrastructure.
At present, Scotland relies on the 2010 Scottish Good Practice Statement on ME-CFS but a process is underway to produce a new Statement more in keeping with the evidence-base of the NICE guideline and the new recommendations for acceptance, diagnosis, and care contained in the 2021 document.
On 14 June 2022 Jason Leitch, National Clinical Director, wrote to all NHS Boards and others with an update on ME/CFS in light of the 2021 NICE guideline and drew Boards’ attention to the new provisions on graded exercise therapy and cognitive behavioural therapy. The letter ended with
While much of the 2010 Scottish Good Practice Statement (SGPS) on ME/CFS remains relevant, we note that the NICE guideline will supersede certain sections. We will be updating the SGPS in light of the NICE guideline and will provide a further update later this summer.
As part of this process of updating, an independent company was engaged by the Scottish Government to gather the views of stakeholders on guideline implementation and, on 5th July 2022, the Report on a Scottish stakeholder review of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome NICE guideline was published.
Maree Todd MSP, Minister for Public Health, Women’s Health and Sport stated:
I welcome the report of this Scottish stakeholder review of the NICE guideline on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), which was commissioned by Scottish Government and carried out by an independent provider. The publication is an important step towards recognising the views and voices of people affected by ME/CFS and those who care for and support them. I’m grateful to all those who contributed their time and energy to this review.
One of the main findings of this report is that there is a visible commitment to supporting the key changes within the NICE guideline, to help end the scepticism and disbelief. It is noted in the NICE guideline that “people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness.
I want this stigma and disbelief to end. The Scottish Government is fully supportive of the NICE guideline, and the accompanying implementation statement. We have also written to health boards and those providing medical education to highlight the key changes within the NICE guideline. We will continue to work to raise awareness on the condition and ensure the Scottish guidance is updated to reflect these changes.
In total 37 stakeholders contributed to the review – 22 through one-to-one or paired interviews and with 15 stakeholders during three group discussions. Some stakeholders declined to participate or did not respond to email requests to contribute. Overall the breakdown of stakeholders who contributed to this process were: 14 clinicians (from across primary and secondary care); 10 third sector ME/CFS organisations/academics; and 13 people with ME/CFS or parents of children/young people with ME/CFS. A short online survey was also distributed to a wider group of stakeholders and 93 people responded.
The Report states that response from the majority of stakeholders of all types was overwhelmingly positive on the new NICE guideline, with the following areas identified as particularly significant:
- 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.
In considering the changes in the NICE guideline, stakeholders were asked which aspects should be prioritised. The majority of stakeholders focused on three key elements: ensuring that the practice of GET ends; undertaking education and training with clinicians; and developing specialist services and referral pathways. There was consensus that these needed to be achieved or committed to before the NICE guideline could be implemented.
Discussion identified two aids to implementation: an existing ME/CFS specialist-nurse led service in Fife and the knowledge and experience of ME/CFS third sector organisations.
However, there were considerably more barriers:
- Scepticism: the embedded disbelief of some sectors of the clinical community around the veracity of ME/CFS and whether it is psychological rather than biomedical.
- Lack of knowledge: the paucity of training and education about ME/CFS means clinicians lack confidence over diagnosis and management of the condition.
- Lack of specialists: anyone with specialist knowledge tends to have lived experience of ME/CFS rather than develop expertise as a result of clinical pathways.
- Lack of investment: this has signalled to some that ME/CFS is not a priority, and means that education is not in place, nor pathways for management of the condition.
- Lack of ownership: although ME/CFS is defined by WHO as a neurological condition, it does not sit neatly under any one banner, and there is a reluctance to take it on for this reason.
- Despite these barriers, feedback suggested that moving forward should concentrate on the development of specialist services, partnership working, the education of current and futureclinicians and leadership from the Scottish Government.
To implement the NICE guideline in Scotland, several recommendations were identified –
- The Scottish Good Practice Statement is updated to reflect the changes within the guideline.
- 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 is a major step forward and it must be recalled that, unlike in England, there are no specialist centres for ME/CFS treatment in Scotland. Scotland is however well-served by large medical schools and by major research-led Universities and so the scope for teaching and influencing young medics and scientists is one which should be grasped.
