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    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.

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    Anyone here used HIV/AIDS treatment for CFS?

    Again, I'm not disputing that EBV/enterovirus/CMV/etc can trigger ME/CFS. But their role is clearly not sufficient and probably not necessary (at least individually, since these "triggers" appear to be fungible). The polio example doesn't change any of this. Polio is necessary for...
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    Anyone here used HIV/AIDS treatment for CFS?

    Perhaps this was not clear, but the hypothesis isn't claiming that outbreaks tend to happen at the point of vaccination. Contaminated vaccine lots would introduce smoldering, subclinical retroviral infections into the population. As shown by HIV and HTLV, most people don't show acute symptoms...
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    Anyone here used HIV/AIDS treatment for CFS?

    Poisoning the well much? And for the record, the proper term amongst the scientifically literate is "hypothesis" not "wild speculation." Furthermore one does not have to prove a hypothesis before making it. That really would be kooky to insist upon that! The contamination hypothesis is simple...
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    Anyone here used HIV/AIDS treatment for CFS?

    The question is clearly broader than HIV and encompasses retroviral involvement in general. More to the point, as far as politics are concerned, I think the true issue is whether the scientific community is honest and objective enough to evaluate the existence and effects of its own unintended...
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    Anyone here used HIV/AIDS treatment for CFS?

    That's not what sorin implied. This is just roundabout appeal to authority, the idea that awards, prestige, etc, conferred by those in a position to do so, signal or determine what is true. Mix in wishful thinking and you've managed in a single sentence to give hollow acknowledgement to the...
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    New doubts on Zika as cause of microcephaly

    I'm not sure I understand the relevance of the additional part of the article to the numbers I posted. You asked if there were non-zika microcephaly cases and the epidemiology shows that most cases are in fact non-zika (or at least not known to be zika-related). If the claim is that zika causes...
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    New doubts on Zika as cause of microcephaly

    http://www.nature.com/news/zika-and-birth-defects-what-we-know-and-what-we-don-t-1.19596 These are the most recent numbers I've seen. 854 confirmed cases of microcephaly with a lab confirmed zika association in only 97, so it looks like most have nothing to do with zika (though it's unclear if...
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    VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

    This topic isn't going away. Not until it has been investigated scientifically, transparently, and in good faith. There are plenty of people who can discern science from "science"-like. It has nothing to do with devotion to Mikovits (though I do appreciate her endeavors) nor fixation on a...
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    VIP Dx/WPI Combined PCR/Culture Poll for ACTIVE and LATENT Infections

    Don't you know how it works? Lipkin is exempted from having to muck around in petty things like evidence and logic and scientific process. He is a scientific priest and his word is Gospel. Heck, the press even wrote about his superstardom. /sarcasm
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    Partial molecular cloning of the JHK retrovirus using gammaretrovirus consensus PCR primers

    Just posted this in the other thread on this study...didn't realize there were two. One of the more interesting quotes from the paper, made in reference the "final word" study by Lipkin (Alter et al): In other words, they could not have detected JHKV in that study. Therefore, as people said...
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    Partial molecular cloning of the JHK retrovirus using gammaretrovirus consensus PCR primers

    One of the more interesting quotes from the paper, made in reference the "final word" study by Lipkin (Alter et al): In other words, they could not have detected JHKV in that study. Therefore, as people said at the time, the Lipkin study wasn't nearly as "final" as it was publicized to be with...
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    Comment by 'asleep' in 'The Reefs of Reification'

    Very interesting post anciendaze. I assume you've seen the following: http://www.futuremedicine.com/doi/abs/10.2217/fvl.13.25 . The game is still very much afoot. "The corresponding statement about humans would be that virologists have no way to rule out undetected retroviral infections in...
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    Signature to spread the current action alerts

    I just copied and pasted the text directly and the hyperlinks just worked. However, if this doesn't work for you, you can recreate them one-by-one by highlighting the "HERE" text, clicking the hyperlink button (looks like a small chained link), and entering the URL that the "HERE" text should...
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    Opening Pandora’s Box: PANDORA Cozies up to IOM

    I second this as an interim solution.
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    Summary of the IOM Contract Situation

    For those who like a bit of dark satire:
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    The chronological events of the HHS contract with the IOM

    Thanks Nielk! For a summary of the many objections patients have to this contract, see here: http://forums.phoenixrising.me/index.php?threads/summary-of-the-iom-contract-situation.25932/
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    Summary of the IOM Contract Situation

    I have attempted to summarize below the salient facts and objections to the IOM contract. Hopefully this can be of help to anyone struggling to understand it from all the different threads or to anyone in need of a simple way to explain it to others. Please let me know if you have any suggestions.
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    Poll: IOM Contract

    Sushi, thanks for the great input. Has anyone reached out to all/some of the other 35 more recently? Perhaps this should be a higher priority and I will look into it. Delia, what sort of points, or what sort of format would be ideal for your contact? Or in other words, what sort of angle would...
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    Poll: IOM Contract

    Please help by answering the poll to indicate your current opinion of the IOM contract. I hope that the available choices cover most people's positions. Thanks!
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    CRITICAL MASS IS NEEDED AGAINST THE IOM CONTRACT!

    The following is my draft attempt at a petition that, I hope, could be sent around to patients, advocates, and organizations for many different diseases to create a broad and powerful voice. My goal was to make it emphasize the common tactics of abuse suffered by many of these communities. I...
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    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    Thanks beaker. I did see this and have signed it. While it is a good letter and expresses deserved gratitude, my concern is that it's not really even a petition. As far as I can tell, it's not being sent to Sebelius or anyone else in a position to act. How might it affect change beyond perhaps...
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    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    Do any petitions exist in opposition to the IOM contract and/or the CAA? If not, I propose the creation and wide dissemination of the following two separate petitions: Repudiation of the IOM contract and disavowal of any resulting creations/guidelines/proposals, including: Affirmation of...
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    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    So the first ever use of such an IOM contract resulted in definitive diluting and whitewashing of GWI, a disease that is clearly a very politically inconvenient fallout from the military-industrial and pharmaceutical industries. It appears to be nothing short of an all-hands-on-deck political...
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    CFIDS Association asking expert signatories about their current position on endorsing the CCC

    I completely agree, but I would put it slightly differently: All disease advocacy/research organizations are born into and exist within an inherent state of conflicted interest. Any positive strides made in understanding/treating/curing the disease in question will necessarily have a...
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    How the government bought off the advocacy movement

    Claiming something is "revisionist" due to "lack of context" is thoroughly vacuous. It is impossible to provide an account of anything that doesn't exhibit "lack of context" in some form or fashion or from some perspective. Any study of historical documents and accounts places prime importance...
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    How the government bought off the advocacy movement

    You seem to be suggesting that the question of whether or not the CDC responded (and continues to respond) to ME/CFS with negligence and dereliction of duty requires a well-known, widely-accepted motive in order to even be considered. I think this is backwards. The "what" (negligence) is very...
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    How the government bought off the advocacy movement

    Not only is this not a "grotesque proposition," it is a very pertinent and very commonplace consideration. Familial, esp. spousal, conflicts of interest are always relevant in legal, ethical, business, medical and other situations. Suppose someone is leading an large investigation into the...
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    Simon Wessley replies

    In addition to the myriad other issues with Wessely School ruminations, it should be noted that this view fails utterly to account for differing sources of and evidence for these individuals' "belief in a solely physical cause." Imagine that we are instead talking about people who have fallen...
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    ME patients protest coverage of threat allegations

    Absolutely agree. If there were indeed threats (though it's interesting how so many "skeptics" seem to take the claims at face value), they are a legal matter between the parties involved. Nothing more. It is important to understand why it is counterproductive that patients must preface any...