Part of the debate – in the Scottish Parliament on 2nd February 2023.
I think that that took
Ms Webber by surprise, but she coped well.
I congratulate the member on securing the debate. I remember as far back as the days when ME was labelled “yuppie disease”, with the inference that it was a middle-class condition—at best psychosomatic and, at worst, just plain, privileged self-indulgence. Thank goodness that we have moved on, albeit not enough, and that ME is recognised by more people as a neurological condition.
It is certainly recognised as a neurological condition on the NHS Inform website, which says:
(ME) or chronic fatigue syndrome (CFS) is a long term (chronic) neurological condition that affects the nervous and immune systems.
People with ME/CFS experience severe pain and fatigue ... when the body is not able to recover after using even small amounts of energy.”
“feels very different from ordinary tiredness. It might take a day or 2 to kick in after physical, mental, or emotional exertion ... It doesn’t go away with sleep or rest and affects everyday life ... The symptoms ... vary from person to person.”
“you’ll be able to do some normal everyday activities. At other times, symptoms may get worse, affecting your daily life.”
“physical or mental activities, or combinations of activities, can leave people with ME/CFS feeling completely exhausted. It can also lead to an increase in other symptoms.”
However, the issue, is that
“There’s no single test to detect ME/CFS. A diagnosis is made after other possible known causes for symptoms have been excluded.”
I support the comments that long Covid might have opened up more minds to the condition, whose varying impacts add to the complexities in diagnosis and around treatment—if suitable—and both physical and emotional support.
I, too, will give examples. I recall a colleague many years ago who suffered from ME when little was known about it. By way of explanation of how the condition impacted him, he told me how he could shave normally one day but could barely move the next, as if his internal electric circuitry had rebelled. The dramatic changes from one day to the next that the condition can bring means that people sometimes accuse others—wrongly—of faking it, or as Sue Webber said, of malingering.
I have the consent of a constituent to relay her experience and that of her son. She wrote:
“I’m happy for you to use my story if it’s anonymous, as in ‘a constituent’, or first name only, please. This is more for my son’s privacy than my own. Here is our story in short. When my son was 14, his life changed dramatically. He had been academically gifted, sporty and generally a social and happy boy who enjoyed life. He came down with ‘a bug’ that he never recovered from, and was later diagnosed with CFS/ME. For two years, he was housebound and unable to go further than our back garden, too unwell to attend school and isolated from friends. My son was offered no treatment and support was almost non-existent. I gave up my job to look after him. Everything was a struggle as this condition is hugely misunderstood. CFS/ME is much more than debilitating fatigue. He also suffers muscle aches, stomach pain, headaches, cognitive fog which makes learning very difficult, sleep disturbance and the fatigue affects everything he does. I spend my time caring for him and researching possible treatment or supplements that could help his recovery even a little. We’re now 4 years in and we have no support apart from a private specialist that we fund ourselves. We have spent thousands over the past few years on private consultations, supplements and medications to help his condition. Recovery is slow and costly, isolating and lonely.”
I note the complexities of the condition and I look forward to hearing the minister’s response to members’ contributions. I thank the member for bringing this important debate to the chamber. We have debated ME a few times, but we need to keep alert to the issue.