June 2011

Posted by Cort Johnson

Dr. Cheney was an enthusiastic supporter of the XMRV finding early on; he did a webcast on it and several blogs, suggested treatments and provided patients for the WPI to study. In this post from Jan Van Roijen on Co-cure Dr. Cheney reveals the latest on the Lipkin study from a conference call with Dr. Lipkin.

The fact that he – an important ME/CFS physician and thinker – who is not involved with the trials, was on the conference call demonstrates Dr. Lipkin’s commitment to get many of the major elements of the CFS community involved.

What did we learn?… Read More

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Posted by Cort Johnson

The National Cancer Institute jumped in early on the XMRV discovery and has probably funded more research into the retrovirus than any other Institute but two weeks ago they were the first NIH Institute to definitively say that XMRV did not play a role in CFS or prostate cancer.
Now the NIH’s update of their website is concluding much the same thing – while leaving themselves some wiggle room. Their website now states that XMRV appears to be a contaminant and then, in a bit stronger language, “The body of evidence now indicates that XMRV does not play a role in ME/CFS.d”

What does this turnabout mean for the two NIH studies?… Read More

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Posted by Cort Johnson

Annette Whittemore on Nevada Newsmakers.

Looking calm and composed Annette Whittemore stated that she had been prepared for negative studies in this field but not for a stream of negative studies using protocols that were different from those used in the Lombardi study. (This must have been difficult to watch but was probably inevitable as researchers usually use their own techniques to find pathogens before they resort to using the exact protocols in the original paper). She stated that the WPI was looking at their protocols and the other protocols side by side in order to figure out what was going on.… Read More

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Posted by Cort Johnson

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The CFS State of the Knowledge Workshop has not yielded any new money for CFS….the NIH is cutting back…and bureacrats are talking 2012 or 13 at the earliest. And then there is Vivint….giving away $250,000 on the basis of Facebook votes…

CFS researchers are like parched travelers crawling across the desert…they just want a little water to drink.

In the right hands $250,000 can go a long, long way. Gordon Broderick parlayed $100,000 from the CFIDS Association into a 4 1/2 million dollar grant. The Pacific Fatigue Lab turned a similar sized grant from the CAA into a repeat exercise study that is redefining how researchers do studies.… Read More

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5915-Dollar_symbol.jpgThe CFS State of the Knowledge Workshop has not yielded any new money for CFS….the NIH is cutting back…and bureaucrats are talking 2012 or 13 at the earliest for any more help.

CFS researchers are like parched travelers crawling across the desert…they just want a little water to drink…they have lots of ideas, scores of great projects…they just need a little money…And here is Vivint….giving away $250,000 on the basis of Facebook votes…

But don’t think $250,000…think millions because, in the right hands, $250,000 can go a long, long way. Gordon Broderick parlayed $100,000 from the CFIDS Association into a 4 1/2 million dollar grant.… Read More

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Posted by Cort Johnson

Abvisory Committees for Phoenix Rising open upPhoenix Rising is committed to being a leader not only within the ME/CFS field but in how web technologies can be innovatively used to support people with health problems (in our case ME/CFS). We see many ways health support sites could be improved and we plan to make a Phoenix Rising a model of how people with chronic disorders can use how web technologies to empower themselves.

Over the next couple of months we plan to unveil a website that incorporates the blog and the former Phoenix Rising website into one entity. Along with that we will provide a Physician Review program specifically tailored to people with ME/CFS and Fibromyalgia.… Read More

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Posted by Cort Johnson

Permanent Forum Member slot of Phoenix Rising Board of DirectorsThe Forums are a major part of Phoenix Rising. In recognition of this we have allotted a permanent space on the Phoenix Rising Board of Directors to be filled by a Forum member. Depending on how many nominations come in we will hold a vote; and the top three nominees will go to the Board and one person will be chosen.

The Forum Board Members main job will be to guide and assist Phoenix Rising in its core mission – to enhance the health of people with ME/CFS. A secondary objective will be to provide feedback back and forth from the Forums to the Board and vice versa when appropriate.… Read More

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Posted by Cort Johnson

XMRV - The XMRV virus theory took its worst shots yet as two more negative studies appeared in the influential Science Journal. Science then requested that the authors of the original paper retract the original paper, which they refused to. In response, Science slapped an “Expression of Concern” attachment on the paper citing serious questions about it’s validity, putting a chilling effect on the field. It stated it would wait for the two big NIH studies to complete before it made any more moves.

Then the National Cancer Institute, with a new study of its own out, simply publicly stated that XMRV both in prostate cancer and CFS was the result of sample contamination.… Read More

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5902-Communication-Skills.jpgThe Phoenix Rising Forums Could Use Your Help!

Moderating is an essential component of maintaining an environment for passionate, productive conversations on the Forums. The number of moderators at PR has run low of late, putting strain on the moderators present and taking its toll on the community as well, for which we are profoundly sorry.

We are currently in the process of re-working moderator policies and procedures to make it easier on everyone involved and encourage you to apply if you’re interested in a position, even if you’re unsure. No experience is required and there are no set time commitments – we work around (not through!) your health and place a strong emphasis on caring for yourself.… Read More

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Posted by Cort Johnson

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5899-Standing_Out.jpgThe Forums are a major part of Phoenix Rising. In recognition of this we have allotted a permanent space on the Phoenix Rising Board of Directors to be filled by a Forum member. Depending on how many nominations come in we will hold a vote; and the top three nominees will go to the Board and one person will be chosen.

The Forum Board Members main job will be to guide and assist Phoenix Rising in its core mission – to enhance the health of people with ME/CFS. A secondary objective will be to provide feedback back and forth from the Forums to the Board and vice versa when appropriate.… Read More

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Posted by Cort Johnson

Coalition4MECFS call for action on DSM-5The Coalition4ME/CFS - a coalition of US ME/CFS non-profit organizations – has issued a Call to Action on the impending DSM-5 proposal and provided information to assist organizations and patients in writing their own letter to the American Psychiatric Association. The submission period ends June 15th. 


THE COALITION ANNOUNCEMENT

DSM-5 Background:

Why this call to action is important to you:

Among other changes, the DSM-5 proposal includes the establishment of a new category called Complex Somatic Symptom Disorder (CSSD). The criteria for a CSSD diagnosis include somatic symptoms that last more than 6 months and significantly disrupt life combined with the doctor’s assessment that the patient has a disproportionate concern about the medical seriousness of his symptoms.

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Posted by Cort Johnson

WPI responds to Request for Retraction by Science JournalWPI Response - Dr. Mikovits reponse to the request for retraction started off with a blast -at none other than the editor in chief of the most influential science journal in the world over what appeared to be a relatively minor issue – a day or so breach in a papers embargo – which she called “gross disregard for the integrity of the scientific process” 

Dr .Mikovits, on the other hand, appeared to have good reasons to be upset. In a Science Now article she noted that the request for retraction came on a Thursday afternoon before a holiday weekend leaving her and the others “pretty well stunned,” .

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