Part of the debate – in the Scottish Parliament on 2nd February 2023.
I, too, thank Sue Webber for securing this important debate. I extend my thanks to all those with ME who have reached out to Scottish Green members of the Scottish Parliament to share their stories.
I understand that when a person’s symptoms are severe, even writing an email can be enough to trigger a flare-up, so I am grateful to all those who have taken the time to share their experiences.
I join colleagues from across the chamber in welcoming the report of the Scottish stakeholder review of the NICE guideline on ME. Myalgic encephalomyelitis—often referred to as ME for short—is a long-term condition that affects around 20,000 people in Scotland. ME is a complicated condition that can vary significantly among different people, so it is extremely important that we accept and adopt some of the key changes suggested in the review. A central part of that is supporting changes in NICE guidelines and ending the cynicism and disbelief that people who live with ME experience in relation to their condition. It is important that we support those who are living with ME by acknowledging their condition, and that we ensure that others who might have the condition are believed and encouraged to come forward and seek medical support.
As we have heard, ME is a condition with varying symptoms that are specific to each individual. Common symptoms include fatigue, sleep disturbance, issues with recovery from physical activities and cognitive issues around memory and concentration. The severity and prevalence of symptoms can vary widely from individual to individual.
There is no specific test to diagnose ME, which makes diagnosis and treatment difficult for many people. Again, I underscore the importance of having a debate on the issue. Post pandemic, now is a vital time to advance the discussion around ME in the public domain. I am pleased to see the Government’s statement regarding the review, and I welcome its support for the NICE guideline.
I would like to focus on the experience of some of my constituents in Central Scotland. One theme that emerged from constituents is the lack of belief among healthcare professionals in patients’ ability to advocate for their own healthcare. Even though the new NICE guideline on ME, which was published almost two years ago, advised against use of treatments including graded exercise therapy, some patients with ME are still being recommended that treatment by doctors in Scotland. One woman described how, during her first appointment in June 2022, the doctor said that he knew that graded exercise therapy got a bad rap, but that it could be effective for some people. When she replied that she would never engage in graded exercise therapy because her daughter’s ME had become severe due to constant pressure on her to do more and to push herself beyond her energy limits, the doctor justified his advice with what the patient believed was further misinformation about deconditioning. That is just one example from many stories of patients who feel that they have little choice but either to accept advice, even if it goes against the research that has been produced by charities that have campaigned on ME, or to be labelled as refusing to engage with their care.
When people with ME need to become their own best advocate, they become less trusting that our healthcare system will acknowledge and address their medical needs. We still have a long way to go in understanding how patients can manage ME long term and avoid issues continuing to appear. I would appreciate the minister outlining actions that have been taken, or are due to be taken, on the report’s recommendation that pilots be funded in various health boards to develop specialist services. I am pleased that patient involvement will be an important part of that work; I fully support that and the third sector collaboration that is to be embedded in the design.
I thank #MEAction Scotland for all the work that it is doing to support individuals with ME. Its advocacy and policy work have done much to give the debate greater prominence, and for the betterment of individuals who live with the condition.
However, we should be clear that ME is not a rare condition: its prevalence is four in 1,000 people in Scotland. It is vital that we begin to acknowledge that the condition is prevalent across the population and that we build in support measures for people to come forward and gain the diagnosis and support that they need.