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.Phoenix Rising, where about 1,000 active subscribers plant an average of 250 posts every day, has recruited Dr Neil Coulson, associate professor in health psychology at Nottingham University, to study the role the forum performs in helping patients make the most their lives.
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.Follow the ME Association on social media: