Stories about ME/CFS get a huge response when they appear in the media. Online stories receive thousands of views (this New Scientist story got 16,000 Facebook ‘likes’) and hundreds of comments (over 500 for this article in the UK’s Daily Mail).
ME/CFS is a severely disabling disease that affects multiple systems in the body, including the brain, immune system, endocrine system, autonomic nervous system, muscles and gut. Two recent, major reports commissioned by US government agencies (the IOM and P2P reports) confirm that it is an organic disease and clearly not of psychological origin.
The controversial history of ME/CFS — a severely disabling organic disease, treated for years by a powerful psychiatric lobby as though it was caused by “false illness beliefs” or was “all in the mind” — is extraordinary. The neglect of 17 million patients worldwide and the lack of treatment and research is a huge, unreported scandal.
Patients, and our clinicians and researchers, want this story told. And we want journalists to get the stories about the latest, immensely promising biomedical research into the public domain. We want people to know that research into ME/CFS is desperately underfunded. The funding situation has to change if we’re to have any real hope of getting back our lives.
You can find some astonishing background facts about ME/CFS here.
Who to contact
Charities that support patients and provide information are listed here. Many are national groups with plenty of experience with the media.
It’s time to stop illustrating articles about ME/CFS with pictures of beautifully groomed office-workers yawning or looking as though they have a slight headache. ME/CFS is a seriously disabling disease with patients at the severe end of the scale being tube-fed, lying in darkened rooms, unable to leave their beds.
It’s not ‘chronic fatigue’, and the typical stock-photos that come up on searches related to ‘fatigue’ or ‘chronic fatigue syndrome’ trivialise the disease, upset patients, and misrepresent the facts.
We’ve provided links to a collection of photographs from stock agencies that would be appropriate, on our stock photography page.