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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To register, simply click the Register button at the top right.
The notice on the FB page that the IACFS statement was posted to the XMRV info page is in the comments on the post about today's update.
The links under 'Additional Information' are not all listed by date of posting. Otherwise the IACFS/ME statement would appear below the advert for the webinar and the Future medicine article, and the 'Science study', would be much further back. Anyway, a link is not good enough, when the statement comes from the IACFS/ME.
No personal offense meant. I should have been more precise and less cavalier. Please accept my apology's and if you would like I'll delete the post.
- I expect that a premier patient advocacy organization not engage in rumor's such as 'sources indicate that the paper will be released in a few weeks'.
- I expect a premier patient advocacy organization like the CFIDS organization to present factual information if they have it and to keep quiet if they don't.
- I expect a premier patient advocacy organization like the CAA to make strong statements against government interference in science that directly affects the health and well being of the patients they are representing.
- I expect a premier patient advocacy organization like the CAA to make a strong stand and to organized patient based campaigns in letter writing and protesting any action that directly affect the health and well being of the patients they are representing in a negative manner.
For those interested in the evolution of various definitions used for CFS/ME, a new article by Dr. Leonard Jason's group from the America Journal of Biochemistry and Biotechnology. http://www.scipub.org/fulltext/ajbb/ajbb62120-135.pdf
Yeah, the bad thing about any Patient Advocacy Organization is that there can be a type of think that "the patients are too ill, we know what's best for them". I think in some respects that this has happened with the CAA. My impression, and it's only my impression, is that the folks who are in charge are more likely to listen to the government agency's in a effort to keep on the side that the bread is most buttered. Do I see genuine concern on the part of the CAA for their patient population, to a smaller degree, yes.
There is a balance that has to be struck within any organization like this between the patients and the government agencies that are most likely to fund the work that will help them. Right now I find the CAA's policies to be more heavily skewed towards government policy's than to patient concerns. Hence the lower star rating. (grins) I also, resent this attitude. While I am grateful to much of what the CAA has accomplished I believe that the group is at a difficult turning point. The face of ME/CFS advocacy is changing rapidly just as AIDES advocacy began to change in the 1990's. It's up to the CAA to make the necessary changes to their advocacy style in the face of those changes. Part of that change is to listen to the patients and make sure the patients are being cared for in an open and transparent manner.
There has been nothing open, honest or transparent about the Alter Paper suppression.
From our XMRV resources page (http://www.cfids.org/xmrv/default.asp):
"Publication of several more studies XMRV in samples from CFS patients is anticipated, with papers pending from groups at the National Institutes of Health/Food and Drug ...Administration (NIH/FDA), Tufts University (presented at Invest in ME conference in London), Institut de recherches cliniques de Montral (presented at the Cold Spring Harbor Laboratorys Conference on Retroviruses) and other institutions. Journals employ different review processes and the length of time from submitting a manuscript to publication can vary greatly. Journals also have different rules about pre-publication release of data into the media; unofficial reports sometimes jeopardize papers in press. Data will have much more impact if it gets into high-impact journals, so we urge patience until published reports are officially released. The study pending from NIH/FDA attracted a lot of attention in June after news of its conclusions was leaked by a Netherlands news agency. The researchers have conducted additional experiments as requested by the reviewers and the paper is expected to be published later this summer in the Proceedings of the National Academy of Sciences."
Jennifer Spotila In addition, the Association stated in the July 2 CFIDS Link that "we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible."
Thank you for the replies. I would appreciate is all these posts were moved to the main CAA facebook page, which only you can do.
"we are actively advocating for publication of the study conducted by NIH/FDA as swiftly as possible"
I'm sorry.... I must have missed this. Can you direct me to where I can find what this advocacy consists of?
The Lombardi paper was reported to be under review for five months at Science, and its important to recognize that top journals enforce tight requirements on their authors. The stronger the evidence is when it is published, the closer we will move to having scientific consensus on this critically important issue.
This totally ignores the fact that the reason for the delay is not the normal peer-review process, but that the CDC asked HHS to pull the NIH/FDA paper.
>The CDC (couldn't find XMRV + instead of saying that, said that XMRV was not correlated with CFS - a huge logical jump from what they tested and their results)
>NIH/FDA (did find XMRV, and correlation with CFS and I think in the healthy public at more or less the rates in the Science paper by Mikovits et al)
>HHS (the boss of both)
According to Mindy Kitei, ( http://www.cfscentral.com/2010/07/fdanih-paper-in-limbo-patients-unite.html ) the NIH/FDA paper was in galley proofs (final stage of publication) when HHS pulled it, an action the PNAS publisher had never seen happen to a paper once accepted in his 4 years as editor (the only paper ever pulled after acceptance was pulled by the editor himself, and later published).