June 2010

[ATTACH]3001[/ATTACH]Amy Dockser Marcus at the Wall Street Journal has become the go-to journalist for news on XMRV and CFS in the national media. Now she’s broken the news that the Alter study, soon to be published in the prestigious journal “The Proceedings of the National Academy of Sciences of the United States of America”, has now been withheld from publication.

This followed reports that a negative study by the CDC was yanked at the last minute from publication in another reputable journal ‘Retrovirology”. The papers were reportedly put on hold because because ‘senior public health officials’ wanted to see either ‘consensus’ or simply a clear reason why the papers disagreed.… Read More

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Amy Dockser Marcus at the Wall Street Journal has become the go-to journalist for news on XMRV and CFS in the national media. Now she’s broken the news that the Alter study, soon to be published in the prestigious journal “The Proceedings of the National Academy of Sciences of the United States of America”, has now been withheld from publication. This followed reports that a negative study by the CDC was yanked at the last minute from publication in another reputable journal ‘Retrovirology”. The papers were reportedly put on hold because because ‘senior public health officials’ wanted to see either ‘consensus’ or simply a clear reason why the papers disagreed.… Read More

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Patients leapt for joy at the news suggesting that the WPI’s 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’s Facebook site posted a link to Dr. Raccienllo’s blog but refused to discuss the press release otherwise, citing the need for a prepublication embargo of scientific findings. The CFIDS Association didn’t post a link anywhere as they cited the same need. Both organizations either fund or produce research and need to maintain strict standards regarding scientific mores.

ESME – an Alliance of European professional researchers, felt no such compunctions, immediately sending a link out to all their subscribers and posting the press release on their website.… Read More

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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 Zagreb, stating that both the FDA and NIH had confirmed the WPI’s original findings.

Dr. Harvey Alter is the Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. The Dutch journalists report that Alter’s lecture stated “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”.Read More

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Written by Cort

I put this together after getting an email from someone I know about a kind of unusual treatment that worked very well for her.

June’s adrenal glands weren’t just low – they were shot. In fact her cortisol levels were low enough to get her diagnosed with Addison’s disease; a disease characterized by low cortisol levels (hypocortisolism) and adrenal insufficiency. That got her searching Addison’s groups to see what they were trying.

Quote:
Addison’s disease - (Hypocortisolism ) – is characterized by a suite of symptoms very similar to those found in ME/CFS.

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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 going to give away to the top 50 vote getters in its Facebook Community Giving contest. The top organization is going to get a check for $250,000; the next four are going to get checks for hundred thousand dollars, and the next 45 are going to get checks for $20,000.… Read More

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After a bout with the flu when she was pregnant in 1993 Martha Kilcoyne was stuck with flu-like symptoms that never went away. On disability after two years of fruitless battle with the disease, she and her husband started over from ground zero. Working by themselves they pioneered several techniques that forward thinking physicians use as a matter of course today.

An activity/ medication/sleep/symptom log allowed her to identify activities that helped and hurt her. Finding good sleep and pain medications and a strict sleep hygiene program helped her to finally get some deep sleep.

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Dr. 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 recounts that she, like everyone else, ‘tried not to believe in it” (eg CFS) but (unlike others) she just couldn’t push those strange immune abnormalities away. Other researchers brushed CFS patients off as depressed but Nancy Klimas had a background in psycho neuro- immunology and she knew that depression did not to that to the immune system.

Working together with Dr.… Read More

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