Advocacy

by Jody Smithhands around the world

The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.

There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.… Read More

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Posted by Cort Johnson

Phoenix Rising is proud to join the Coalition 4 ME/CFS. Every member of the Phoenix Rising Board of Directors has had ME/CFS for over ten years and we are all personally aware of its costs.

A recent letter one of our Board Members, Pat Sonnett, wrote to Amy Dockser Marcus of the Wall Street Journal, summed up the feelings for all of us.

Coalition 4 ME/CFS“Amy, thanks once again for covering the story of ME/CFS. I firmly believe that much of the patient anger and frustration we’re witnessing now is justified and is a direct result of decades of denial, ridicule, neglect and malfeasance on the part of our government health agencies whose responsibility has been to investigate this illness properly.

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Posted by Cort Johnson

The public review session on Monday in Atlanta was part of the CDC’s ten-year review of the program. Thus far the research program has received several internal reviews and an external review and is now in the process of creating a Five-Year Strategic Plan. The public review session Atlanta was focused on suggestions regarding the CDC’s future direction.… Read More

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Posted by Cort Johnson

Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.… Read More

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Posted by Cort Johnson

We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program.  The only thing that’s happened to change that viewpoint is the implosion of the CDC’s program; things are still as bad as ever over at the NIH.… Read More

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