(Names have been changed)
Rowan was diagnosed with ME in 1999. Before becoming ill, she regularly travelled overseas for work and leisure, lived independently and had a full social life. After becoming ill, she was retired from her job, unable to continue living on her own and had to move back in with her parents.
“I lost most of my friends and couldn’t continue with almost any of my leisure activities. I could barely concentrate to have a conversation, to make decisions or to read a book, I spent most of the day every day prone in bed. This lasted for years- I was still living at home until 2023- that’s 24 years of my life I effectively lost.”
Although Rowan was diagnosed early and was able to access the only ME/CFS hospital unit open at the time, the only advice available for managing the disease was Pacing.
“ME is currently incurable and medically untreatable, by which I mean, there is no medicine, no treatment plan only a management plan whose main aim is to attempt to stabilise the person and avoid further deterioration.”
Sadly, Rowan’s sister’s children were also diagnosed with ME when they were 7 and 11 years old respectively, and there were no new treatments available to them.
“20 years on from my own diagnosis, her kids were offered Pacing. 14+ years on they are still sick and mainly housebound and sometimes bedbound, and their days are spent trying to conserve small energy reserves.”[RR1]
In mid-2024, Rowan’s sister sent her details of the Action for ME Doctor service she had found while researching other support available. “They booked an appointment with an Action for ME GP specialist and it was a gamechanger!”
Rowan had a one-hour appointment with the Action for ME Doctor. “This appointment was comprehensive; offering insights into what the latest thinking is about ME/CFS, discussions around co-morbidities, good advice regarding management of my ME/CFS and a structured plan to move forwards.”
The plan including suggestions of new medications to try and some supplements that could also help. A recommendation was made to Rowan’s NHS GP.
“My GP liked the letter and has been very happy to get on board with the plan. I think to be honest they were probably pleased to get direction from a specialist!”
Alongside receiving a thorough plan, the experience of speaking to a Doctor with an in-depth understanding of ME was transformational for Rowan.
“I have been so sick, for so long, and the lacklustre to dismissive stance of the medical world has been a constant. While I have had some better and some worse patches over the many years, my ME/CFS is ever present, hugely limiting and in 20+ years the medical strategy has remained unchanged and pretty ineffective. So in terms of what has changed? My ability to hope has changed, I now have some hope that someone is in my corner and that positive change to my ME/CFS may be possible.”
By donating today, you can help ensure people like Rowan continue to have access to expert healthcare and support to manage their ME.
