A Times article by Barbara Lantin, 'Online, you needn't suffer alone' (November 19, 2007), describes how chatrooms and forums are providing invaluable support for people with a wide range of illnesses. The journalist singles out the CGD Research Trust's online forum for medical professionals and researchers, among others.
Hits on this forum have rocketed within 24 hours of the article being published, but with characteristic caution, the medical fraternity seem to be participating by observing rather than posting their experiences and questions at this stage.
In these very early days of the new forums, the Trust's General Manager Rosemarie Rymer is confident medics will seize this opportunity to ramp up interaction:
"It is great that the forum has been mentioned by Ms Lantin in the Times, and quite clearly that is helping to drive people towards our forums. I am looking forward to a flood of postings on the forum by doctors and nurses. Patients and families with CGD have told me they are telling their own GPs, nurses and hospital specialists about our website, and are encouraging them to post messages in their dedicated forum".
As Ms Lantin's article says, "these forums have developed into an empowering tool for patients. In some cases they can also affect the prescribing habits of doctors, inform research and bring top-level medical expertise together."
People with CGD will be pleased to hear that the article also highlights the pioneering Aspergillus Trust website, which is part funded by the CGD Research Trust. Avoiding and treating aspergillus and other fungal infections is a major issue for those with CGD.
The article ends with some useful tips for patients on choosing and using online message boards, including this advice: "Find a forum with plenty of traffic to ensure that you get prompt replies." So, the more the merrier!
LINKS
To register on our forum for medics and researchers click on this link or paste into your browser window:
http://cgd.mmaweb.net/phorum/register.php?3
To read the Times article in full click on this link or paste into your browser window:
http://www.timesonline.co.uk/tol/life_and_style/health/article2894007.ece
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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