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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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    Please help with survey in analysis of PACE trial - urgent

    Moderate (but right on the borderline of severe). I wish there was a category for "moderately severe" or "severely moderate". This week: 3,3,1,3,3,3,3,3,2,2,3 Good patch: 3,3,1,3,2,3,3,2,2,2,2 Bad patch: 3,3,3,3,3,3,3,3,3,3,3 I want to clarify that the "drowsy" category for me is not an...
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    Science article "False Positive" chronicles XMRV research controversy

    The Science editorial reads like tabloid trash in many spots. And the unflattering photo of a crabby-looking Dr. Mikovits paired with the quote "fine, leave us alone" is just awful. Not something I'd expect to see in a so-called prestigious journal. The New York Times article is so much...
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    XMRV abstracts from 15th International Conference on Human Retroviruses

    Yes, those sections of the presentation are intensely interesting - Dr. Bell makes a good case for retroviruses as potential causative agents, and I think his statement "once they figure it out this is going to really shake the foundations of medicine...there's something going on here that has...
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    XMRV abstracts from 15th International Conference on Human Retroviruses

    The program for the conference is available here: http://htlv2011.regaweb.med.kuleuven.be/sites/default/files/program-20110526.pdf It looks like many XMRV presentations will be on the afternoon of June 6, with Switzer starting off, then Silverman, and Ruscetti is a few names further down...
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    Article: What Science Giveth Science Try to Taketh Away: Science Journal Asks WPI To Retract XMRV CF

    Oops, I did not handle the quotation function correctly - in the above post I'm responding to a quote by Cort, not by me! Sorry. A bad brain day.
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    Article: What Science Giveth Science Try to Taketh Away: Science Journal Asks WPI To Retract XMRV CF

    Actually, Switzer said at the time that they'd found simian retroviruses in the workers, NOT XMRV. He was going to look closer. I took another look at the video from CROI. It is accurately transcribed by the post I referenced. So no, the CDC had not been able (at least at the time of the...
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    Science asks authors to retract XMRV/CFS paper

    I am wondering if there's any significance to the fact that these two new papers and the request for retraction came out just before the International Conference on Human Retroviruses (June 5-8). I would think that this would certainly affect discussion of XMRV at the conference, to put it...
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    The HORRORS of Klonopin addiction

    I've been taking Klonopin since 1989, and it works very well for me, with no side effects. I take a low dose, .5 mg. Usually I just take one tablet a day, but on very sick days I take two. I have no trouble dropping back to one tablet after I feel better, and I've never increased the dosage...
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    HAVE YOU NO SENSE OF DECENCY? at CFS Central

    Thanks Mindy for your superb testimony!! It was fantastic. I especially liked (and agreed with) your use of the famous quote ("have you no sense of decency....") from the Army-McCarthy hearings. It's very appropriate, considering the shameful history of CDC/NIH treatment of ME/CFS. And it's...
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    Article: State of the Knowledge Workshop at the NIH: Pathogens II - Epstein Barr virus and the Enter

    Thanks Cort for this article!!! I'd like to add one more study to your list of Straus publications - namely the infamous 1989 study published in the Journal of Clinical Psychiatry (Kruesi M, Dale J, Straus SE, Psychiatric diagnoses in patients who have Chronic Fatigue Syndrome). The abstract...
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    No XMRV found in spinal fluid

    That "sense of weariness" bothered me as well, in fact that's got to be one of the worst descriptions I've seen yet (not counting the psych stuff). Weariness is what I USED to feel decades ago when I mowed our lawn in 90 degree Texas heat and then came inside and made dinner and cleaned the...
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    Lapp Reports XMRV is Found in CFS Using Genome Detection Technology/Ampligen News

    I just checked my fingernails and I'm missing lunulas too - I only have them on my thumbs and one finger on my right hand. This is very interesting! My fingerprints had mostly disappeared by 1989, especially on the smaller fingers, and they've been like that ever since. I hope Chronix...
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    I'm in an article in the Globe and Mail

    I personally think that the article was better than average for one thing, early on it described CFS as a complex disease rather than a fatiguing condition, which is how its often characterized in articles. And although it did focus on lack of energy rather than neurological symptoms, it did...
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    CFSAC Day 3 10/14/10

    I slept thru the morning session and am just now experiencing all that "Jazz" now that the committee is on break. With or without coffee, it's darned annoying! I did get out of bed in time to catch all the patient testimony - thank you to everyone; it was moving, educational, and very...
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    Cfsac day two

    My screen now says "broadcast concluded" - what? The old NIH webcasts always kept on going till the meeting ACTUALLY ended; this one seems to have simply cut off at 5PM Eastern time. I hope the archived footage will have everything included - that was a great testimony that got cut off...
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    Watch US CFSAC meeting NOW!

    Thank you for the transcript of this morning's session, Parvofighter! I slept until noon Eastern time and missed the entire morning. I'm looking forward to reading about the earlier session when my brain wakes up around midnight. I agree with George's assessment - the part that I saw...
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    Subscription to Dr. Cheney's Newsletter

    I checked Dr. Cheney's research website at http://www.cheneyresearch.com/sign-up and the price of an annual subscription is $499.50. You can also choose to get a one-year monthly subscription, which is $49.95 a month, and a 3-month subscription is $79.95 a month. Those are pretty steep...
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    Subscription to Dr. Cheney's Newsletter

    I'm interested too, this is a great idea! I hope Dr. Cheney OKs it - I don't understand why he feels the need to charge so much for an online newsletter; I'd like to think he's using the profits for CFS research.
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    NIH Video of XMRV Conference

    The UK quote from J. Stoye is in the video, but it's easy to miss since he's mostly blustering about the CDC. It appears around the 47:11 minute mark, and he says, "I'm not going to go into questions about the CDC or policy in Britain". Thank you for posting this link VillageLife!
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    Fact Checking for CFSAC Testimony

    You can find a master list of CDC-CFS publications going back to around 1993 at http://www.cdc.gov/cfs/publications/index.html They are grouped by category - in some cases you can read the entire article, other times it's just the abstract (summary). I didn't see any clinical antiviral...
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    Telebriefing is up and available to listen NOW: 5 pm EST

    I just finished reading (or trying to read - most of it is WAY over my head) the actual FDA/NIH PNAS article - interesting that on page 6, the authors say that "In sum, none of the four studies that have failed to confirm the PCR evidence reported by Lombardi et al., nor our own study, has...
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    NIH/FDA XMRV Paper by Dr. Alter Out!

    I had trouble getting on the forums too! Now that I'm on the site, I'm not closing this page till I go to bed tonight! I was wondering....does anybody think that perhaps the FDA/NIH only mentions MLV's rather than XMRV in the press release so that the paper doesn't seem to conflict with the...
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    Major Public Media Campaign Launched - This WILL Get the Attention of MILLIONS!

    I agree that this is a good cause! But could you double check the link to paypal in Post #1? When I click on it, I get the dreaded "404 page not found". Thanks!
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    Q & A with CDC's STEVE MONROE, by Mindy Kitei

    Gaaaagh. Dr. Monroe is indeed more bureaucrat than scientist. It's too bad there's no way to revoke a PhD. degree for unscientific behavior - as far as I am concerned, he's just MR. Monroe, and he can take MR. Switzer and.....well, whatever. I would love to get this guy under oath in front of...
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    Suspense. Any news on WHEN the NIH/FDA study might come out?

    I sent an email to Dr. Francis Collins (head of NIH) several weeks ago, and got a reply (this week) from the Office of Research on Women's Health. The main paragraph reads, "You expressed concern with the delay in publication of the paper written by Dr. Shyh-Ching Lo of the Food and Drug...
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    New CFS Patient Advocate Blog

    Thanks for posting this link!!! I like the optimistic tone of the blog entry. And I agree that it's important for patients in Nevada to support Harry Reid regardless of their political beliefs. He's really been one of our best friends in government, for as long as I can remember.
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    Is XMRV Causing finger print problems in CFS?

    I had noticeably disappearing fingerprints by early 1989, after having been sick for a few years, but before starting on medication. To tell the truth, though, I'd never looked that closely at my fingers, so I don't know when the fingerprints actually started to disappear. Dr. Cheney took a...
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    XMRV POSTER - Spread the word!

    I think the bearded fellow next to Dr. Mikovits is Dr. Louis Katz of the Mississippi River Valley Regional Blood Center, who is also an exec VP of AABB. He's the guy who gave a teleconference on June 11 concerning XRMV and the blood supply. There's a photo of him (with somewhat shorter hair)...
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    FDA/NIH PAPER IN LIMBO; PATIENTS UNITE, by Mindy Kitei

    Thank you for this new article Mindy!!! Keep those sources talking! It's not surprising that CDC made the initial request to pull the NIH paper, but it's dismaying to realize that they have enough clout to not only get DHHS to go along with their wishes, but also allow them to publish their...