Part of the debate – in the Scottish Parliament on 2nd February 2023.
I speak in this debate simply to give voice to constituents who have contacted me to describe their condition, because I think that hearing their words in the chamber is very important. Their voices have to be heard.
First, I refer to the story of David, who wrote to me to say:
“I am speaking up for my wife and daughter who both have ME. My daughter has suffered with ME for more than 4 years. This illness has transformed her from a 13 year old that was full of life involved in Youth Theatre, dance/signing/playing musical instruments and participating in sports to someone confined to her bed 24/7; sensitive to light, heat and noise and debilitated by pain and brain fog.
We have experienced the lack of understanding within NHS due to previous NICE guidelines, lack of GP and consultant knowledge of ME and the related illnesses. Initially my daughter was offered cognitive behavioural therapy, and graded exercise therapy. Neither addressed her symptoms. It was only when able to participate in online consultations with specialists in England that we were able to make progress in diagnoses and have started to address some of the symptoms that have caused the decline in her health.
Although unable to participate in education she has also experienced a failure to provide suitable alternatives to in person schooling. Despite the pandemic the online offering for schooling for those who physically cannot attend school due to illness has still to be developed.”
I am grateful to David for sharing that story with me, and I am privileged to share it with members today.
I also received the following testimony from Jules, who said:
“For over ten years I was a therapist and devoted my life to helping others as best I could.
I first became ill but kept going and put it down to general aches and pains. I finally had to give up what I loved with a final diagnosis of severe ME.
I’ve been to psychology to be told it’s all in my head, pain management to be told to push through the pain and physiotherapy who told me my muscles were so weak there was nothing they could do!
I’ve been on so many prescribed medications and vitamins; I was taking in excess of 22 tablets a day and yet I would still crash.
I am 90% house and bed bound and my GP has exhausted all avenues for me therefore—as I was told—‘you must try and manage your illness as best you can.’
My husband works long shifts and I’m home alone for at least 10 hours a day; sometimes I have to crawl on my hands and knees to get to the bathroom and I can go days on end without being able to bathe or shower as I’m just too exhausted to move!
I feel like so many others that we are just left to rot; I feel like my mental health is now suffering as I become more and more isolated from society and there’s no one to help me and many others just like me.
I am severely fatigued to the point that I cannot stand upright otherwise I get so dizzy I’m about to faint. I also have severe laboured breathing but there’s nothing recommended but rest and resting doesn’t cure ME.
I don’t wallow in self-pity. I spend what time I can online being an advocate for Action for ME and whenever I can, I offer support to other members of the social media groups I am in and share my stories and experiences.
I have a devoted and caring husband who does everything he physically can to look after me but it’s tough when I’m home alone for so long with no care.
I try to do what I can to keep my spirits up but on days when I crash for no reason and I can’t watch TV, or read a book, I have to have my curtains drawn and be in a darkroom. Sometimes I even need soft silicone earplugs to block out any noise as I get cognitive dysfunction too!
This is not living Stephen this is just existing!”
The words of David and Jules are a plea to the minister to act now on the independent report that she has in her hands.