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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.
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As the CFSAC meeting and our continual quest for real funding gets underway its important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders theyve decided are also worthy of little funding. Remember being put in math class as you...
Once again I excused myself to Shane and took another trip to the restroom. This was getting a little embarrassing but it wasn't all that unusual. The pee every 15 or 20 minutes process had started earlier at the OFFER Conference. Believe it or not that darn carpeting had triggered this; the...
The XMRV International Workshop is over, the Alter paper was finally published....we seem to be in a kind of lull....what is next for XMRV and ME/CFS? Of course anything could happen at any time (and has) but we do have some clues.
First, though, let's take a look at where we are. The XMRV...
(The CFSAC meetings are the only time during the year when ME/CFS advocates sit down and prod federal officials to do the right thing. We all know the statistics - we know the federal government has basically been pretending we don't exist for decades. The action Bob, Rivka and Charlotte...
Dr. McClure has been publicly pretty clear that she believes XMRV is not present in ME/CFS. Last week she hinted about an article soon to come out that will explain just how contamination caused XMRV to pop up in ME/CFS patients. Now to her credit she and her Imperial College...
Dr. Singh and XMRV
An Old Murine Leukemia Virus (MLV) Hand - Dr. Singh knows these viruses well and she's not surprised at the difficulty researchers are having pining them down. She has been studying XMRV for four years and a close relative of it (Moloney Murine Leukemia Virus) for 12 years...
Veronica Di Grigoli's (Athene on the Forums) first novel, 'Evil Eye', just debuted on Amazon.com in the US after getting excellent reviews in the UK. Part detective story, part character study - think Amy Tan and Jane Austin looking for clues to a child's mysterious disappearance in...
]Hillary Johnson has just posted a long blog that provides alot of backup information on the controversies over the last couple of weeks. According to one of her resources the directors of the NIAID and the NIH as well as administrators at the CDC, were all involved in the withdrawal of the...
Patients leapt for joy at the news suggesting that the WPIs findings have been validated by two major institutions in the US but not everybody was happy that the information had been released in a way it was. The Whittemore Peterson Institute posted a link to Dr. Raccienllos blog but refused to...
Dutch Journalists have been all over the European XMRV Conferences. Now in a startling announcement two Dutch journalists from the Health Professionals Journal Ortho report that they were able to obtain a lecture from NIH official Dr. Harvey Alter at the Blood Transfusion workshop May 26/27th in...
When I finally got what the Chase Community Giving Contest really is it made my jaw drop. What it is is easy money for non-profits - and lots of it - and in these difficult economic times that's a godsend for nonprofits.
Chase has deposited a boatload of money (5 million dollars) that it's...
I put this together after getting an email from someone I know about a kind of unusual treatment that worked very well for her.
Junes adrenal glands werent just low - they were shot. In fact her cortisol levels were low enough to get her diagnosed with Addisons disease; a disease...
http://www.cfsclinic.com/NK_photo_adjusted_op_558x643.jpgDr. Klimas has been one of the central figures in CFS. A prominent AIDS researcher in the mid-1980's she became acquainted with CFS when patients with another strange kind of immune dysfunction showed up on her door. In Osler's Web she...
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The Problem - We know CFS patients cant get any respect. We have solid data showing there are high rates of CFS prevalence (@1,000,000 people in the US), that CFS causes high economic losses (up to 20 billion dollar a year), and that it causes high rates of disability. In short we have data that...
Chris, the Patient Advocate regularly provides overviews of ME/CFS conferences and events. Here he provides an at times hard-hitting take on the latest Invest in ME Conference. Thanks to the PA for his years of communicating with the ME/CFS Community. Thanks for allowing us to print his blog...
The main subject - the CFSAC Charter was not the most enthralling subject - but it is a critical topic if the Committee is going to make a difference and Dr. Wanda Jones should be congratulated for thinking strategically and devoting time to trying to get the Committee on more solid ground...
(This interview took place in 2008) Rebecca Artman ended her term as the Patient Representative on the CFSAC Committee last October. She is being replaced by Eileen Holderman. Besides being the patient rep on the CFSAC. Rebecca played an important role in the founding of Pandora.
How did...
A million and a half dollars, two hundred fifty patients and seven years later the UK government's best hope for locking in its twisted approach to ME/CFS permanently, fell to earth with a crash. UK ME/CFS patients, certainly arent out of the woods, but they can breathe a sigh of relief that...
Dr. Frivold is the husband of Berit Frivold, who's recovery from ME/CFS using the Lightning Process, was posted a month or so ago. Dr. Frivold, is naturally very happy that his wife has recovered and, after reading the discussion on Berit's recovery, sent me these observations.
I recognize...