October 2012

Jody Smith

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

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Forum member RivkaRivka extends an invitation to members of the ME/CFS, Lyme and MCS communities to join together in a teleconference to say “Thank you; We love you; Goodbye” to Rich Van Konynenburg.

All are invited to the
ME/CFS, Lyme and MCS community’s
Memorial Service
for
Rich Van Konynenburg
on
November 18, 2012

 

On Sunday, November 18, 2012, please join members of the ME/CFS, Lyme and MCS communities in saying “Thank you; We love you; Goodbye,” to our beloved community leader, Rich Van Konynenburg.

We will be joined by Rich’s wife, Diana; Dr. Neil Nathan, who worked with Rich on his Simplified Methylation Protocol; and Dr.Read More

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Phoenix Rising and Me

October 22, 2012

Jody SmithJody 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

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Image courtesy of imagerymajestic at FreeDigitalPhotos.net

by Jody Smith

The Food and Drug Administration has deemed ME/CFS to be one of 39 conditions that may receive their special consideration. But of these 39, only 20 conditions will be picked. If ME/CFS is one of those 20, patients’ comments will be heard through public meetings and through mailed and emailed messages.

The FDA evaluates and approves drugs before they can be put on the market. They may also create incentives that will encourage companies to turn their focus to ME/CFS.

The FDA is holding a public meeting and is looking for input from ME/CFS patients about the FDA’s patient-focused drug development initiative.

Read More

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Help win $100,000 for Medical Equipment for a new Chronic Diseases Clinic in Vancouver. Vote every day until Monday 9am PST, 6pm UK.

The Aviva Community Fund Contest is open for Canadian projects and international voters – anyone in the world can vote – and your vote is urgently needed daily until Monday at 12 noon Toronto time (9AM PST, 6 PM London time).

The project will help fund research equipment and exercise testing equipment for a new Complex Chronic Diseases Clinic opening in 2013 in Vancouver to address chronic illnesses such as ME/CFS, fibromyalgia, multiple chemical sensitivities and Lyme disease, research them and provide the support that sufferers deserve.… Read More

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The federal advisory committee for chronic fatigue syndrome meets twice a year in live webcast events

The bi-annual federal advisory committee (CFSAC) meeting for chronic fatigue syndrome is upon us. It’s intriguing to note that ME/CFS is one of the few disorders to have a federal advisory panel all to itself.

CFSAC contains ex-officio officials who represent a variety of federal agencies (CDC, NIH, FDA, Social Security Administration and others), and ME/CFS professionals who provide recommendations to those agencies.  The meetings on Oct 3rd and 4th will be videocast live from 9-5pm EST.

Assistant Secretary of Health Koh Talks

Assistant Secretary of Health Dr.… Read More

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