Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year …
The holiday season just doesn’t live up to the hype, especially for the chronically ill and their caregivers. You people with ME/CFS know all too well what I’m talking about.
I am one of the lucky ones, and I know it. My symptoms are generally mild and while they keep my life small, I’m able to do more than many who have ME/CFS.
Today I drove for 20 minutes to a shopping plaza and picked up a few things for Christmas, then drove back home.… Read More
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”
The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More
After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others …
When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.
I guess I thought that whatever it was that I had was what you had … what they had … what that person laying on their face over there had …
Turns out I couldn’t have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.… Read More
Jody Smith reflects on the growth of the Phoenix Rising forums, from a handful of members in 2009 to several thousand today…
There may have been other forums for people with ME/CFS back in 2009, but if there were, I didn’t know about them. Phoenix Rising’s forums, as far as I knew at that time, were unique. So when I stumbled upon this place I began to seriously hang around.
Forum posts from all sources were infrequent back then, maybe half a dozen in a day. As more members began to slowly find their way in, there were the occasional riotous days of (I’d estimate) perhaps two dozen posts by half a dozen people.… Read More
Jody Smith remembers the early days of the Phoenix Rising forums – and explains why she’s glad to be back…
I don’t know exactly when I stumbled upon Phoenix Rising. It was during a period of years now shrouded in a CFS fog, when I was mostly awake in the middle of the night, sleeping through much of the day.
I spent time on the computer as my body and brain allowed, searching for any information that might help me find out what was so desperately wrong with me.
Many sites taunted me by being too difficult for my crippled brain to comprehend.
… Read More