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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.
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Cort
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The first 'Official' Phoenix Fundraiser will provide essential information infrastructure elements to Dr. Bateman that will assist her in her studies on XMRV with Dr. Light/Singh, on XMRV with Glaxo-Smith Kline, on muscle and other receptors with Dr. Light, on Ampligen with Hemispherx and other...
We saw the power of the Federal Advisory Committee on CFS (CFSAC) last October when Annette Whittemore, Dr. Peterson, Dr. Coffin and others presented live testimony on video on XMRV. The Committee is one of the only places where federal officials can compelled to give public testimony on the...
The odds have always been against the researchers with the guts or commitment to take ME/CFS on. With its unfortunate name, vague definition and complicated, multi-systemic nature its gotten little respect and even less funding. Everybody knows the statistics - last in the NIH in funding.$20...
Yes, the WPI has been frustrated, and sometimes vocally so, regarding the inability of the three XMRV studies to validate the original Science study results. Yesterday, in a surprise announcement Annette Whittemore threw the gauntlet down, so to speak. For sure she did it politely but her...
Courtesy of the Wall Street Journal we finally got a look at what will surely be the most comprehensive XMRV study that we'll see. It will surely clear up many of the questions surrounding the virus.
It's a full bore effort; one that probably only the federal government could take on. Six...
Dr. Goff, one of the top retrovirologists in the field, taked with Dr. Racaniello about XMRV for almost an hour. This was a rare opportunity to hear how experts in the field assess the XMRV/CFS connection. Here's my take on what they said from the XMRV Buzz Page
XMRV and the Prostate - One...
Id contacted Dr. Ravindran earlier and mentioned I was coming out to DC but we fell out of contact and I assumed my chances of getting the study in while I was in town were nil. It didnt help that I waited for several days before I called but several hours after I called to tell him I was in...
A month ago the head Dutch researcher, Kuppeveld, stated that he considered XMRV story over. After what he described as an intense effort to find the virus failed he was folding up shop on it; there would be no more XMRV studies coming out of his lab.
No papers have been published since then...
The patient community has been on a wild ride lately. No, no studies have been published but patients are digging deeper into the studies and coming up with some surprising findings.
Three er Make That Two CFS XMRV Validation Studies...
The past few months have not been easy for XMRV. The head of the Dutch study flatly stated that he believed the WPI's samples had been contaminated. Dr. Shepard's assessment was nothing if not gloomy and Dr. Vernon's seemed to suggest that if the WPI's results stood up that they probably...
Marly Silverman and others at PANDORA and the Landford Foundation have big plans. She wants nothing less than to build the first NeuroEndocrineImmune Center for the research, treatment and education into diseases like Chronic Fatigue Syndrome, Fibromyalgia, Gulf War Syndrome, multiple chemical...
Is there any more terrifying place for CFS patient to be than the emergency room the hospital? Sure, emergency rooms are upsetting for everybody but to be in emergency room knowing that the ER personnels biases towards you could leave you with substandard care, at the very time you need good...
Congratulations Genevieve. I think 'being here now' is very important. My guess is that our systems just overreact to negative impulses. These negative impulses live in our assessing, nattering minds. Getting away from that is very beneficial.
I certainly feel much more healthy when I'm in...
In May of last year I received an e-mail from Berit Frivold a chronic fatigue syndrome (ME/CFS) patient whod been ill for 13 years. Like many people shed tried just about everything she could get her hands on and nothing had worked. She noted that
Both she and her husband were extremely...
(Vistide is a very strong drug with potentially very negative side effects that Dr. Peterson has been using in select patients for several years now. HVS has been telling about his experiences with the drug on the Forums and agreed to lay them out in a more organized fashion)
Why did you...
A small Dutch study found zero evidence of XMRV in chronic fatigue syndrome patients. In some ways it was the weakest study of the bunch; it used quite old samples and a watered down criteria but it did use the same primers and used a similar amount of nucleic acid. They searched for sequences...
The inability of the second UK XMRV study this time from a friendly research group headed by Dr. Groom to find any XMRV in a very large sample of patients was rough news for sure. The ME Action Group in the UK took a rather resigned tone in their response while Dr. Vernon highlighted a few...
As expected Dr. Vernon delivered a rather comprehensive overview of the latest XMRV study in the Retrovirology journal. Dr. Vernon spent some time making clear who just who did this study; it was basically the best of UK retroviral researchers (one 'world-renowned') plus top ME/CFS UK...
UK researchers are not winning the hearts and minds of CFS patients thats for sure. Just a couple of uplifting weeks after Dr. Mikovits displayed so much enthusiasm and confidence in XMRV the other shoe has dropped. An Imperial College researcher said another negative study was coming and here...