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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Blog entries by Cort
Empty Sella Syndrome and CFS: A patient study
We propose a study to possibly characterize the first anatomical abnormality in CFS - empty sella. Adin Burroughs suggested this study based on his MRI records showing that a filled sella early in the disorder and an empty sella later on. I know of...
"For having lived long, I have experienced many instances of being obliged, by better information or fuller consideration, to change opinions, even on important subjects, which I once though right but found to be otherwise." Benjamin Franklin
Once again I am excited about what is to come in...
Corinne returns for her second Followup visit since her first visit to Dr. Peterson in Sept. 2009. She had been on a protocol consisting of saline IV's, amino acid IV's, procrit, probiotics and Valtrex since April, 2010. How has this former fitness instructor but now mostly bedridden person with...
What is ME/CFS in Vermont like? Invisible suggests that its much like it is in the rest of US. A struggle for health and a struggle to maintain ones sense of mental well-being in the face of a medicals communitys disregard and often disdain. Vermont does have something or rather someone...
Dan Moricoli is doing so great stuff from at the ME/CFS Community Center. Check out this video of an Olympic Champion espousing the need for more support.
Olympic Champion Laura Kraut on ME/CFS and the ME/CFS Pocket Money Research Fund.
The ME/CFS Champions Campaign seeks to raise...
In an exploration of be-ing it pretty quickly becomes clear that we are never alone in this worldwe are always, always in it with something. Whether its how our body feels or our thoughts about the person at the grocery store or the dishes in the sink or our general situation were always in the...
The Quality of Life Blogs:
Explorations in Being (or Looking for Happiness in an Unwell World)
What is be- ing? Its very simple - almost too simple; it's just what it appears to be - its just be-ing - its the place present just before thought a place of stillness and peace that spiritual...
Talk about reaching out and communication. Dennis Mangan, the leader of the CFS Working Group at the NIH, has set up a ListServe that will automatically send you information from the NIH on what their ME/CFS activities. This is another way Dennis is transforming the way the NIH operates with...
Late last night Taniaust posted the following blog on the Forums stating that she had taken pills and wanted to die and saying good bye. She left her address and Ecoclimber called the police in Australia and they went to check up on her. We don't know what happened after that.
Tanisaust has...
Phoenix Rising is an officially designated 501 3C non-profit which means that donations are tax deductable, and, of course, we'd love to take some off your hands
Phoenix Rising is currently engaged in several exciting projects; treatment and physician review projects to help patients...
Could the first drug for ME/CFS be a chemotherapeutic drug? That would sound like a long shot at best but the fact is a two physicians in Norway are having surprising success with a drug originally developed to treat cancer.
Their Story - Dr. Fluge and Dr. Olav Mella of Haukeland...
ME/CFS is hitting the lawmakers in Washington DC right in the chops tomorrow with a provocative half page ad suggesting that everybody, healthy or not, is put at risk when the federal government ignores ME/CFS. The ad has been the fruit of months of work from people with ME/CFS, the MWPCA...
(Dr. Friedberg is an intriguing figure; a psychologist questions the effectiveness of CBT and who, as President of the IACFS/ME, has taken the CDC to task for beginning CBT trials yet someone who is also believes that pacing and 'stress management' can pay real dividends for some people...
(Marly Silverman is the co-founder of PANDORA, a Florida organization devoted to improving the lives of people with ME/CFS and other NEID's (neuroendocrineimmune disorders). Marly granted permission to post her blog here.))
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The IGIVE video contest is an easy way to get Phoenix Rising and another non-profit some much needed cash. (The other non-profit will get 25% of the prize. We will vote on them on who it is).
You simply register with IGIVE (name, zip, email) - a group that helps Causes raise cash through...
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In 2008 the ME Association conducted what maybe the most comprehensive survey of treatment effectiveness ever done in ME/CFS. Over four months 4,217 people took part, most of them online. It was by no means complete with twenty five treatments or treatment types covered but it did provide a...
The Half Page Ads for ME/CFS for the Wash Post Are Ready for Feedback
The ad samples are ready for your review. Please go here: http://mcwpa.org/?p=166
Go here to give your feedback: http://www.forum.mcwpa.org/viewforum....
Look under "Print Advertisements" and then look for "Ad Samples."...
Federal officials are again sitting down with CFS physicians, researchers and patient advocates to discuss federal policy. This is the third meeting since XMRV burst on the scene and its an important one. (See agenda: http://www.hhs.gov/advcomcfs/meeting...12_agenda.html )
Day One
The...