On Thursday 2nd February, Sue Webber led a debate on ME in the Scottish Parliament. The debate set out to establish what steps, if any, the Scottish Government had taken towards implementing the recommendations of the independently-produced stakeholder review of the new NICE guideline, which was published in July 2022. 

Eight MSPs spoke in total, in addition to Sue Webber herself and Maree Todd MSP, Minister for Public Health, Women’s Health and Sport. Originally scheduled for 45 minutes, the Deputy Presiding Officer granted a thirty-minute extension half-way through the debate, due to the number of MSPs who wished to speak. This is in large part thanks to all those who contacted their MSPs asking them to take part in the debate and/or sent MSPs their stories to explain their experiences of life with ME., so well done and thank you to everyone who got involved.

Opening the debate, Sue Webber shared testimony from long time #MEAction Scotland supporter, Jo (known on social media as ‘The Real M.E.’). Jo, who has been ill for 21 years, called on doctors to take responsibility for the toxic culture surrounding conditions such as ME, Long Covid and Fibromyalgia. She flagged up the systemic bias faced by people with ME and demanded education and consequences to redress this situation. Ms Webber went on to share the story of another constituent, Brighid, who developed ME following Long Covid and called on the Scottish Government to implement the recommendations of the stakeholder report. Remarking on how little progress there had been in Scotland regarding the diagnosis and management of ME, despite the availability of best practice guidance, Ms Webber closed her opening remarks by underlining her support for #MEAction Scotland’s campaign.

She was followed by Emma Roddick (SNP) who reinforced Jo’s statement about disabled people having to become their own experts and reiterated the lack of specialist services. Ms Roddick also  mentioned Jason Leitch’s advice that the NICE guideline should be used to manage ME in Scotland. 

Donald Cameron (Conservative) spoke about the need to support carers and family members as well as people with ME, and there was an intervention to also draw attention to children with ME. He highlighted the lack of services and said that patients are abandoned and stigmatised.

He was followed by Jackie Baillie (Labour) who spoke about the worrying lack of medical care for people with ME and the prevalence of the condition, with the average medical practice having between 20 and 40 patients with ME. She also highlighted the cost to the Scottish economy of the government’s failure to invest in ME care and services – around £17,000 per person, per annum (a figure that doesn’t take into account all those who are also lost to the workforce due to unpaid caring duties). Since the debate, we have received an assurance from Jackie that services for people with ME will be a manifesto commitment for Scottish Labour.

Beatrice Wishart (Lib Dem) joined remotely and called for action on the report recommendations:

“This review will not be worth the hard work that has already gone into it if it does not go some way to improving, empowering and assisting those 20,000 people’s lives.”

She further highlighted the need to look at services for young people and noted that a  lack of agreement on diagnostic criteria for paediatric cases meant a lack of reliable data on the prevalence of ME in children and young people. Ms Wishart called on the Scottish Government to develop a national strategy, ensure the new NICE guideline is implemented correctly across Scotland and support all children and young people in Scotland with ME. Referring to one of the recommendations in the stakeholder report:

“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.”

She asked if an island health board would be considered for one of the pilot schemes recommended by the stakeholder report. 

Gillian Mackay (Green) followed Ms Wishart and called on the Minister to outline any action taken or about to be taken regarding the setting up of the recommended pilot programmes. She highlighted the issue that graded exercise therapy (GET) is still being recommended, despite being advised against in the 2021 NICE guideline.

She was followed by Finlay Carson (Conservative) who also asked if his constituency of Dumfries and Galloway would be considered for a pilot programme, and spoke about the work of the Dumfries & Galloway ME and Fibromyalgia Network.

Christine Grahame (SNP) and Stephen Kerr (Conservative) shared powerful stories sent to them by constituents, which included a person with severe ME. 

Willie Rennie (Lib Dem) highlighted the need for dedicated funding in order to facilitate biomedical research:

“We need investment in biomedical research and clinical trials and we need to be informed by the research priorities set out in 2022 by the James Lind Alliance Priority Setting Partnership for ME…Funding is required – we need it to improve services and it needs to be guaranteed funding for the long-term.”

Closing the debate and responding for the government, Maree Todd, Minister for Public Health, Women’s Health and Sport, thanked everyone who had contributed. She highlighted the stigma and disbelief that is the experience of many, if not most, people with ME. She spoke of the government’s ‘visible commitment’ to supporting the recent changes in ME guidance and claimed that the Scottish Government ‘continued to work to raise awareness of this condition and the impact of those who live with it.’

‘It is also clear that there remains much to do in further coordinating the care of people with ME/CFS and we are working hard to progress that…I assure those living with ME/CFS that we are listening and we hear you…We know that it is critical that we listen to our stakeholders about what changes would be most impactful.’ The stakeholder report has, she said ‘captured the input of the third sector, lived experience and clinical partners on how we drive forward the implementation of the guideline recommendations in Scotland.’

Declaring herself to be fully supportive of the new guideline, Ms Todd explained how, in order to raise awareness, National Clinical Director, Jason Leitch had written to all health boards to highlight the new guideline and in particular the key changes in practice regarding GET cognitive behavioural therapy (CBT). Maree Todd herself had written a similar letter to the Scottish Board for Academic Medicine which passed the information to Scottish medical schools. In addition to this, The Scottish Good Practice Statement on ME had been partially updated to ‘insert the key changes in practice from the NICE guideline’.The updated guideline will be published on the Scottish Government’s website by the end of February.

Following an intervention from Finlay Carson, the Minister conceded that progress had been too slow but said that the Scottish Government is currently liaising with the Royal College of GPs Scotland on how best to disseminate the new guideline. Following the consultation with stakeholders, the Scottish Government had surveyed all Scottish health boards to better understand their care pathways and provision for people living with ME. They plan to publish this information by May 2023 in a report that will review the boards’ implementation of the new guideline. This is intended to highlight any areas of good practice and to highlight where ‘further support is needed to embed the guidance.’ She went on to say that the data will ‘undoubtedly be helpful in identifying suitable places for pilots.’

On the subject of medical education, Ms Todd mentioned the NHS Education Scotland (NES) practice-based small group learning module on ME. NES is currently reviewing feedback on this module from the third sector, which #MEAction Scotland was involved in, ahead of piloting it with GPs.

In closing, Ms Todd assured MSPs that the government would continue to work with those with lived experience, the third sector and clinical partners ‘to maximise quality of life for people with ME/CFS across Scotland.’

Following the debate, members of #MEAction Scotland, people with ME, carers, and colleagues from Action for M.E. and Long Covid Scotland met with Sue Webber. Some other MSPs joined to speak to us, as well as the Minister, Maree Todd. This gave us an opportunity to reinforce and elaborate on the points that were made in the Chamber.

Sue Webber will write to Maree Todd, with our input, to follow up on the debate and reiterate our points about the changes that are desperately needed for people with ME in Scotland.

This debate was another step in keeping up pressure on the government to provide people with ME with the basic care and support they deserve. It isn’t an endpoint, but another milestone in our journey. It helped us identify the MSPs that are willing to stand up for our community and pushed the government to give an update on what progress has been made. We will follow up on the comments about discussions with the Royal College of GPs and the survey of care pathways in all Scottish health boards. The work continues!