Part of the debate – in the Scottish Parliament on 2nd February 2023.
I thank Sue Webber for bringing this important debate to the chamber. I also thank #MEAction Scotland and Action for ME, which provided briefings before the debate.
I welcome Sue Webber’s motion and the recommendations of the review of the NICE guidelines, which are outlined in the motion. They are:
“that ... 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
“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”.
The outcome for any rural or islands health board that is selected to be part of a pilot scheme will be especially important to people who are living with ME in Shetland and other island areas, so I ask the minister to address the question whether an islands health board will be considered for inclusion in the pilot scheme.
ME is a much-misunderstood condition, with symptoms that fluctuate from mild to very severe among individuals who live with it. Some 20,000 people across Scotland have been diagnosed with ME. That is not only a statistic—each of them represents a person, a family and a story. The review will not be worth the hard work that has already gone into it if it does not go some way towards improving, empowering and assisting those 20,000 people’s lives.
Unlike other conditions, ME is not concentrated in one part of the population: anyone can be diagnosed with it. I am sure that those of us who are speaking in this important debate know someone who has been affected by ME. Perhaps it is someone who has had the debilitating illness for decades, is unable to function fully, has had to take time off or even give up work, and yet is considered in some ill-informed views to be malingering—as has been described by other members—when nothing could be further from the truth. I hope for a society that better understands ME and is better informed about how it treats the people who are affected by it. ME impacts mental health as well as physical health.
I know of a young person who has lost many years to the illness. They are often bed bound, and they and their family have had to deal with much over the years. They have lost time as a teenager—that very important period of maturing from childhood into adulthood—and those years cannot be replaced. They have lost education and socialisation, and it affects all the family.
As the #MEAction briefing tells us, children as young as five are affected, and peak onset of symptoms is around 13 to 15 years of age. We need to look at the services that are available to those young people, because there is a lack of agreement about the diagnostic criteria for paediatric cases, which means that there is little reliable data on the prevalence of ME among children and adolescents.
The 2020 NICE guideline for ME advises that a child or young person with suspected ME should be referred to a paediatrician and then on to a paediatric ME specialist team. However, #MEAction has found that that process is flawed, that paediatricians across Scotland are not suitably trained to diagnose and support young people with ME, and that they do not have access to specialists for onward referral or for guidance and support. Healthcare professionals need the confidence to diagnose young people correctly.
More research is needed into causes and treatments. Action for ME is working with the University of Edinburgh to investigate genetic causes of ME. Anyone aged over 16 with an ME diagnosis can sign up to take part in the study.
In closing, I would like to reiterate the calls on the Scottish Government by Action for ME: that it develop the national strategy, ensure that the new NICE guidance is implemented correctly across Scotland and support all children with ME to have access to trained hospital paediatricians and community services.