I have had Myalgic Encephalomyelitis (M.E.)* since February 1989, when I was just 16. I wasn't diagnosed till autumn 1994 by which time I was severely affected. Although I am not as ill as I was for the first few months, when I was basically bedbound, only able to read & understand cartoons, I remain severely affected 24 years on, only leaving the home for important appointments or to go to our holiday home for the summer. I blame the late diagnosis, & following advice to exercise, for the severity of my illness as in the early years I was only mildly affected (able to study full-time, once I cut out most extracurricular activities).
After being diagnosed for over a year, I realised there was a good chance I was going to be stuck being quite ill & disabled for a long period, possibly indefinitely, a prospect that wasn't appealing. Moreover, I realised that there wasn't a huge effort to research the illness well; it wasn't on the radar the way many other conditions were.
I have been busy for the last 23 years working away as a (voluntary) ME activist. Much of what I concentrated on in the early years was raising awareness & understanding in Ireland with the Irish ME/CFS Association. I have done around 50 media interviews & have been featured in most of the national newspapers in Ireland. I have written dozens of press releases & have helped arrange for around 130 Irish families affected with ME to tell their story over the years in over 400 interviews. A lot more people are diagnosed here now & attitudes have improved.
When I became involved, there were only 45 people on the Irish ME/CFS Association mailing list. This made it difficult to respond to some media requests for interviewees. So one of the things I concentrated on was building up the membership. It reached over 450 one stage, though has gradually dropped back now, possibly due to the Internet.
I set up a research fund within the Association in 1996 & gradually with a lot of ground-level fundraising & small donations (I think the largest have been a few donations of €1000 each), we have now raised over €300,000 for much needed research.
We have done mail-outs of information bundles to various information sources incl. to all Irish GPs twice & we are more than 50% through the third one. I was involved in organising our first medical education event for GPs this year.
When I became involved the Association’s newsletter was one or two pages long. As the editor over 22 years, I’ve gradually built it up to a more substantial newsletter which has reached on occasion 80 pages long. I also edit an e-mail bulletin, usually with 10 items that goes out to members around once a week.
I have helped arrange dozens of Irish ME/CFS Association meetings with Irish & international medical & scientific speakers along with dozens of other meetings such as screenings of documentaries on the illness.
I’ve coordinated the Association’s helpline volunteer team for 20 years, dealing with many of the more challenging calls myself. I’ve also dealt with a lot of other enquiries to the Association.
In the mid-2000s, my concentration levels improved & allowed me to read a lot of research papers in the field. I realised a lot of rubbish was going unchallenged & the pool of people who were trying to respond ever was small, so have spent quite a bit of time responding to papers: I've authored or coauthored 7 papers & 17 letters published in various peer-reviewed journals along with over 100 e-letters. Probably my proudest achievement was the publication of my paper, "Reporting of Harms Associated with Graded Exercise Therapy (GET) & Cognitive Behavioural Therapy (CBT) in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". I had previously been quite academically able but things are more difficult now with M.E. so it took a lot of work & sacrifice over more around 15 months. I was also involved with the critique of the £5 million PACE Trial, which was supposed to be the “definitive” of GET & CBT for CFS. In various publications, I or teams I was involved with highlighted flaws in what had been published and eventually reanalysed the data to show that the results were very unimpressive, particularly when objective comes were looked at.
I still live at home with my parents who take care of most of the practical stuff, which frees me up to use the energy I have on ME matters. I follow ME news closely & try to help the ME cause, in Ireland and internationally, as best I can. Twitter, Facebook & other platforms allow me to share what I find to a wider audience. I believe there is power in numbers and together we can make a difference; conversely, I feel that if I & others don't try, we could be ignored and fobbed off indefinitely with rehabilitative therapies like GET & CBT based on scheduling increased activity.
*Perhaps better known in some countries as "Chronic Fatigue Syndrome" (CFS), although some CFS definitions are overly broad
I will wait till then and check before forwarding it to non pwme