June 2010

Posted by Cort Johnson

[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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Posted by Cort Johnson

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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Posted by Cort Johnson

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.… Read More

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Posted by Cort Johnson

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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Posted by Cort Johnson

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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Quote:
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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Posted by Cort Johnson

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Shopping! The easy way to support Phoenix Rising as it takes on some large projects. Every time you use Phoenix Rising to purchase something on Amazon.com Phoenix Rising will receive a 4 to 8% return on your purchase. All your purchases will take place on a special Phoenix Rising section of the Amazon site using Amazon’s secure technology.

Phoenix Rising has complete one-stop shopping United States, United Kingdom, French and German Amazon.com Stores.

Phoenix Rising’s US Amazon.com Store
Phoenix Rising’s UK Amazon.com Store
Phoenix Rising’s German Amazon.com Store
Phoenix Rising’s French Amazon.com StoreRead More

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Posted by Cort Johnson

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.… Read More

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Written by Victoria

(I suspect you are all feeling a little disgruntled, fed up with Chronic illness & pain, & need a good laugh)

I am starting a competition.

Whoever posts the funniest Joke of the Month of June, wins the $50 credit sitting in my PayPal account (they gave me $50 for completing a survey – mind you I don’t remember doing anything much on a survey – I think I just answered a couple of questions on if I was happy with the first transaction of my new Paypal account).… Read More

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Posted by Cort Johnson

By simply voting, P.A.N.D.O.R.A. can win up to $250 000 and Pandora can use it – they want to create WPI-like Neuroendocrineimmune Treatment/Research/Educational Center in New Jersey (and then in Florida). Watch the instructional video in full size by clicking on read more:

PANDORA is in the top 200 and wins $20 000 at this point in time. (7-20)

Simple steps
1)Log-on to your facebook account
2)Search for ‘Chase Community giving’ (product/service)
3)Click on the ‘Like’ button
4) You can go to the search charity box on the page and search for Patient alliance … (you’ll find P.A.N.D.O.R.A.)
5)Click Let’s get started to vote (green button); Give permission!… Read More

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Posted by Cort Johnson

The NIH invests over $31.2* billion annually in medical research for the American people. NIH website

There’s something fishy with the way the medical system works. Take this simple fact; from 1996-1999 the FDA approved 157 new drugs. From 2006 to 2009, not long after the NIH’s budget had more than doubled..the FDA approved only 74 new drugs. What happened? Had the researchers ran out of insights? No. Were they butting up against insolvable problems? Not necessarily. In fact they were doing more and more insightful work all the time….and were spending much more money and had better tools than ever yet, but so far as the patient was concerned they were less productive than ever.… Read More

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2880-webgosox..jpgAs most of you know the Phoenix Rising administration and moderation team is rather small at the moment and we’re always looking for new talents and new viewpoints. When joining the PR team there are no must’s (other than putting some time in) – that means that you are free to do your thing whenever you feel like it. If you have, for example, a bad episode of ME, it’s no problem to be absent for a period of time – we know where you’re coming from.

Ok, now, what are we looking for :Retro cool::

Moderators:

  • your job is to keep the forums clean and guard the quality of interactions
  • you’ll assist us in making decisions about different issues the Forums face
  • your only requirements are trying to be objective and caring

Administrators:

  • your job consists of handling technical issues; ie problems people have and as well as assisting us in adding new capabilities to the Forums
  • you’ll have access to the backpanel of the forum and can start your own projects
  • requirement here is to have some feeling for tech stuff and to be a teamplayer

Mailings list advocates:

  • you will form a new team with 1 or 2 other members and discuss important advocacy mails and free fundraisers with them
  • the only thing required is that you pick-up urgent action alerts, most of them will be posted by users in the action alerts forums, simplify these messages and mail them via a one click system to the more then 250 ME/CFS advocates subscribed to the emergency action list.
  • Read More

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Posted by Cort Johnson

The Problem - We know CFS patients can’t 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 demonstrates that chronic fatigue syndrome (ME/CFS) is a major disorder that should be receiving major research funding….Instead it’s funded like it’s a sore throat.

How far are we from appropriate funding? A long way. We’re not talking a mere doubling or tripling of our current budget, we’re talking 40 to 50 times the amount of funding we’re getting; that’s the kind of funding that disorders the magnitude of chronic fatigue syndrome typically get every year.… Read More

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The Ampligen Supremacy

June 1, 2010

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Written by Kelvin Lord

professor.jpgMy favorite line in the “Bourne” trilogy is given by The Professor. He appears briefly in the first installment, but it is in the second film, the Bourne Conspiracy, that Clive Owen utters the quintessential phrase of the movie. After dueling with fellow agent Jason Bourne in the countryside and lying mortally wounded from Bourne’s shotgun blast, he looks at his bleeding body, and then up at Matt Damon’s character and says, “Look at us. Look at what they make us give.”

In that moment of humanity and pathos, when two field agents who have both been through the same trenches and heartaches connect in unspoken respect, both “The Professor” and Jason Bourne arrive at the same conclusion – that “they” have required too much of them.… Read More

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