Advocacy issues in chronic fatigue syndrome (ME/CFS)
by Jody Smith Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world. It is a lesser known
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Sasha announces a new resource of appropriate photos for ME/CFS media stories … We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained. But do pictures that illustrate
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Sasha invites you to sign a new petition to the HHS to protect patients against the PACE trial, CBT and GET … A brand-new and crucial #MEAction petition has just been launched, opening a new front in the rapidly escalating battle to protect ME/CFS patients from the misleading results of the PACE trial and similar studies. The PACE trial was a £5
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Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising … August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe
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Sasha explains how we can each help to make the most of big media stories about ME/CFS… Love it, hate it, good story, bad story… the media are going to keep reporting on ME/CFS no matter what. But isn’t it time that we saw that coverage as an opportunity? I think we should, because when an ME/CFS story breaks, the doors
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Sasha reports on Llewellyn King’s campaign to find a lone Congress member to do the right thing … Llewellyn King, a well-known political journalist and long-time friend to the ME/CFS community, has made a direct call to U.S. Congress members to help us. Posting on The Hill, a Congress-focused news blog, King has put out an attention-grabbing ‘want ad’: Wanted: Member
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Sasha gives you the tour and tells you what it’s all about… Jen Brea is a phenomenon. After working as a freelance writer in China and Africa, she enrolled for a PhD at Harvard in political science but, four years ago, got sick. She had a fever that lasted ten days. Her health collapsed, and she was forced to go
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Hey, May 12 is our Day. Join with Jody Smith and let’s make some noise … Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and
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In our second article on how to react to the publication of the draft P2P report, Gabby Klein provides her view of why she and a large group of advocates and patients are continuing their protest of the government’s ongoing control and manipulation of our disease via their processes of the P2P and IOM. In yesterday’s piece, Clark Ellis critiqued and praised elements in
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Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients … Thirty years of neglect, incompetence and malfeasance by the Department of Human services (HHS) have rendered ME patients
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Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients … Long, lazy August afternoons. The sun is shining, the birds are singing, the garden growing, and the children are free from school. For many this time of year means holidays, family get-togethers, and a period of general relaxation. However, for sufferers of
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Graham, Janelle and Bob, have once again excelled themselves with their latest take on the ‘poisoned apple’ that was the PACE Trial… Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and…. Whoops, sorry there! I got confused for a moment. Wrong fantasy tale… Several years ago a team
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