The world's biggest online ME/CFS forum, which has a huge following in North America, is to have the secrets of its success analysed by a pair of British academics.
He will be joined by Masters student Anna Maddison, who works in his department. Anna – whose mother has had ME for two years – has herself suffered from severe post-viral fatigue syndrome.
They've been recruited by Mark Berry, moderator of Phoenix Rising, who became prominent on the site following the departure of the American founder, Cort Johnson.
In an announcement on the site yesterday, Mr Berry said Dr Coulson has an international reputation for his work in the past eight years in researching the experiences of patients who access and use online forums.
Mr Berry, a mathematician and computer scientist who now works at Nottingham University, wrote that he has met Dr Coulson who had reassured him that he believes passionately in the importance of online forums in patients' lives.
“Neil isn't the only researcher to have studied online support communities, but he does appear to be the only researcher in the world who has made this area his primary focus,” wrote Mr Berry.
“It was clear to me from our conversations that he had a deep understanding of the issues, and of the revolutionary potential of online communities for healthcare support. The happy coincidence that he is based within a mile of my own home seemed an opportunity too good to pass up!”
The study will include online surveys and discussion.
Phoenix Rising, which has about 7,000 registered supporters, is a US charity.
Thanks for this article Tony. We’re very excited about this project and I’m hoping it will end up giving us a good description of all the positive support that our forums provide to our members – and perhaps some ideas for areas we can improve as well.
I just wanted to add that, although Phoenix Rising is indeed a US non-profit and many of our members are from the US, our membership is very much an international community. Perhaps as many as a quarter of our active members are from the UK, and we have lots of members from Canada, Australia and New Zealand as well as members from all over the world. That friendship, sharing of experiences, and mutual support network with patients worldwide is very important to us. So everyone’s welcome! 🙂