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Scottish Government backs NICE Guideline

July 11, 2022

In December 2021, the Scottish Government commissioned Blake Stevenson Ltd to engage with stakeholders, including national charities, local support groups, health and social care clinicians, representatives from Royal Colleges and people with lived experience of M.E./CFS, to gather their views on the NICE guideline on M.E./CFS, which was updated in October 2021. The stakeholders were also asked what actions they thought were required to implement the NICE guideline in Scotland.

The updated NICE guideline on M.E./CFS was published in October 2021 after some delay, primarily through issues that were raised by some professional bodies. The NICE guideline was largely received positively by patient representatives, although some clinical members and professional bodies disagree.

For this independent stakeholder review, a total of 37 stakeholders contributed. This consisted of 14 clinicians, 10 third sector M.E./CFS organisations/academics and 13 people with lived experience of M.E./CFS, and a further 93 people responded following an online survey that was distributed to a wider stakeholder group. The response from the majority of stakeholders was overwhelmingly positive.

The broad recommendations resulting from this consultation are summarised below:

  • The Scottish Good Practice Statement (SGPS) is updated to reflect the guidelines' changes.
  • 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 by 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.
  • 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.

Scotland's National Clinical Director Jason Leitch has issued a letter to health boards and leads in Primary care about the changes to the NICE guideline. He asks that Scotland, in the absence of a SIGN guideline, refer to other available guidance such as NICE guidance on M.E./CFS. The letter highlights key changes which could be a useful tool if you want to share the changes with your GP or your allied health professional. Download the letter today. Alternatively, we have our Learn about M.E. podcast series which supports the Learn about M.E. CPD module. All of which are available to access today free of charge. The CPD counts for one CPD point too.

Maree Todd MSP, Minister for Public Health, Women’s Health and Sport said:

“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.”

To read the stakeholder review of the Nice guideline on ME/CFS, visit the Scottish Government website.