Part of the debate – in the Scottish Parliament on 2nd February 2023.
I thank Sue Webber for bringing to the chamber this debate on the Scottish Government-commissioned review of ME services. I welcome the review, although it is important that this is not the end of the story but, rather, the start of real change.
#MEAction Scotland has been fighting for proper funding for and research on the condition for many years. Its #MillionsMissing rally that took place in front of the Parliament last year was a challenge to policy makers and those who deliver services. We heard testimony from people who suffer from ME and chronic fatigue syndrome; they spoke about how they often feel ignored and unseen by healthcare professionals, who do not know how to treat them because of a lack of information and understanding.
I have been contacted, as others have, by many individuals and families about the lack of services, and I thank them for their powerful testimony. They tell me that their quality of life is depleted, with many being unable to work, and that stress about paying bills consumes what little energy they have.
The story of Amy, a 16-year-old with ME, is absolutely concerning. Her family told me that
“support has been shocking. Initially nobody advised her to rest: she tried to push on and got much worse. Her paediatrician was unable to help her. Eventually the paediatrician confessed she knew little about the illness.”
There are currently no specialist consultants for ME in Scotland and only one specialist nurse, despite figures showing that a typical GP practice of 10,000 patients will have 20 to 40 people with ME. In a recent survey of practising GPs, 70 per cent thought that ME is rare, and 30 per cent thought it is psychological and not physical. However, in the past 10 years, the Scottish Government has funded only two pieces of research into ME—£45,000 was given to fund half of a PhD project, which amounts only to less than £1 per person. That is clearly inadequate for a condition that affects so many people.
The Scottish economy loses out, too. The estimated cost of ME to the economy is £360 million per annum, or £17,000 each year for each person with ME. ME does not just cause a loss of workforce due to exhaustion and other symptoms; it also has a knock-on effect on the families of people who require care at home: 81 per cent of carers are husbands, wives or partners, and 16 per cent are parents or children. Many of those carers must reduce the hours that they work or give up their jobs completely in order to provide the care that a loved one needs.
Those issues are not exclusive to people with ME and CFS: people with long Covid report many of the same symptoms as those with ME, and testimonies have shown similar treatment by healthcare professionals when people are seeking diagnosis. Let us join things together, because the money that has been granted to treat long Covid does not go nearly far enough; it amounts to just £16 per person. I welcome the COVID-19 Recovery Committee’s inquiry into long Covid, which I believe is an opportunity to get right how we treat that condition. I also believe that the inquiry will have knock-on effects. Long Covid and ME should not be treated as two separate entities—we can learn from both and put the solutions in place for both.
The conditions are debilitating. They affects hundreds of thousands of people, and should be treated as having the same severity as any other medical condition.
People with ME/CFS have waited a long time. The Scottish Government should implement the recommendations from the review without delay and it should dedicate proper funding to ME/CFS and long Covid as a matter of urgency. For too long, people with the conditions have been ignored and let down. It is time that they received the recognition that they so rightly deserve.