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Article: The Best XMRV Study Underway? Dr. Singh Talks!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 11, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Wasbeer

    Wasbeer

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    "Increased levels of estrogen in women, for instance, could possibly trigger the virus as well."

    If Estrogen plays a role in XMRV-replication, we might have an answer to the sexe question: why is CFS (XMRV?) more present in women than in men?

    Possible answer: because Estrogen is!
    (just some late night speculation)

    Nice summary Cort, saves me the energy of listening and trying to make sense of it. Thanks!
  3. Cort

    Cort Phoenix Rising Founder

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    Honestly its appalling that researchers haven't looked at hormones in women more. They've hardly even tried to figure out why more women than men have this disorder.....that fact has been staring them in the face for over 20 years and there's been almost no work on it. It does make you wonder about a gender bias in Science. :eek::(
  4. urbantravels

    urbantravels disjecta membra

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    YA THINK???

    Oh, but they HAVE addressed the question of why more women than men get it. It's because we are hysterical, irrational beings who can't handle stress. Problem solved!
  5. richvank

    richvank Senior Member

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    There was a paper at the 2009 Reno IACFS/ME conference from the CDC that addressed the gender prevalence issue.

    Also, I offered a hypothesis involving estrogen metabolism to explain it at the 2007 conference, which can be found at www.cfsresearch.org

    I hadn't considered the hysterical aspect. Guess I'll have to look into that! :D

    Rich
  6. Cort

    Cort Phoenix Rising Founder

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    That's the problem Rich, one small paper (that has not yet been published I don't believe) that was not particularly impressive. There have been a few small studies - nothing significant enough to provide answers. Glad to hear that you've addressed that in your work though.

    At least the interview with Dr. Racaniello indicates we have another very talented woman looking deeply in ME/CFS.;)
  7. rescindinc

    rescindinc

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    Hey Ladies and Germs,
    Regarding the men vs. women with M.E. and or CFS. 95% of the sick gulf war veterans are men. and Garth Nicolson
    backed up my claims from CNN that GWS is VERY similar to 'CFS'. Long before any knowledge of a possible XMRV or other single virus.

    even a high ranking mole at one of the closed door meetings at Congress in 1996
    with willy wonka Reeves testifying for the CDC, called me at home and said "you won't believe what happened today", that a Congressman asked Reeves if there were any similarities
    between CFS and GWS and that Reeves paused.....and looked around behind him at the people observing his testimony....and the mole told me that the look on Reeves face was if he was looking for who might 'rat' him out to the public...and Reeves then said, "there was a Mr. Hennessy and his group that has been right early and often...GWS is not just similar to CFS....it is virtually identical..." I only claimed
    that they had many similarities. i never said identical. But Garth did a survey of some 35 or more symptoms, and that the 650 gulf war veterans that he tested had come within 5% of the same answers as typical CFS patients.

    I didn't then, nor do i now, trust government officials on virtually anything due to our track record with government bureaucrats and the truth...but, two weeks later, i saw Reeves on the CBS evening news, and he was cornered somewhere in DC. and the reporter asked him directly about links between CFS and GWS and he repeated most of what the mole told me. i have him on videotape saying "GWS is not just similar to CFS, it is virtually identical!"

    and roughly two years after that, i received word from a military official that worked with the CDC on issues involving new recruits, and this military officer told me that Reeves was doing studies on the saliva and perspiration of recruits being left in the field for 72 hours with NO outside help, and that they were looking for blood, saliva, or perspiration and BP markers for FUTURE soldiers to see if they could identify FUTURE GWS patients before they actually went into battle... (by this time, close to 25% of GWI soldiers had made some kind of complaint or request for partial or complete disability along the lines of symptoms checklists that Garth Nicolson devised.

    Eventually, i heard that there was close to 300 million dollars put aside for treatment and investigation of the cause of "Gulf war illnesses"
    (they were no longer calling it Gulf war syndrome)

    and Reeves official line,...i will never forget this....he said, and the Pentagon repeated it early and often

    "There is NO, ONE, NEW and UNIQUE Illness known as Gulf War Syndrome"

    Most of us NEVER claimed that it was NEW, OR ONE illness, or that it was UNIQUE!
    so the mother F*(*^#$S could truthfully say what they said,
    and guess what the PRESS wrote the next day in all the papers..

    "Gulf War Syndrome doesn't exist!" which was little Simon the Weasally's take for the past 19 years...
    Deliberate misinformation..the old KGB couldn't have been more proud if PRAVDA wrote something similar on the front page!

    I lived through the Vietnam War in Japan. the distrust of the average wounded soldier and their doctors in Vietnam, the Phillipines,
    and Japan was SOOO damn high. that many soldiers who had the front of their foot blown off by a cheap $3 home made north vietnamese land mine, had doctors make special plaster casts on the front of their foot, with heroin inside, with instructions on
    where the soldier could drop off their "package" back in certain cities stateside for 40k to 50k so that they could get a start on getting a house or bankroll, because they knew how long it would take to get any help through the VA. and then with Agent Orange, it took
    literally 24 years for them to get anything..and then they got about $4400 a piece! less than 6 months salary back then for an entry level job.
    Now, we have something like 285,000 sick soldiers from GW1. and many of them who are getting disability are getting it with CFS or FMS
    and a few with MCSS diagnoses. it is criminal!

    Not to pour any water on the XMRV crowd. i realize how desparate so many people are. But, i have gone through more than 20,000 letters, phone calls, emails, and at least 1100 personal meetings with so called M.E. or CFS and FMS patients, and i have a hard time believing that this nasty, and from what i hear, fast growing, retrovirus could have destroyed soo many lives in sooo many countries,
    and have modern science still having such a hard time isolating it. Not, that i have a hard time finding the CDC utterly incompetent
    and stunningly dishonest.

    I believe in Rich Vank's work more than most of the so called work product out of NIH or CDC over the past 2 decades, and this Dr. Singh
    looks pretty sharp (in more ways than one!)
    But, please don't get so revved up about XMRV. It will be worth it for nothing else than it scared the pants off all the middle aged men at CDC and NIH to get off their behinds and do some serious work.
    But, if XMRV is found out to be mostly a passenger, or not as ubiquitous as WPI studies originally thought, then all is not lost.
    I remember 20 years ago, the pictures of Dr. Bell, Dr. Cheney and Dr. Defreitas on the cover of the CAA chronicle, they acted as if Columbus had just discovered a new continent...and when other mucky mucks couldn't duplicate her work....we were labeled as the biggest hypochondriacs since the first MS. patients. One MS patient mailed me a photo of a special MS wheelchair that had TWO leather straps across the front...one across the waist...and one across the chest...so that the Devil would half to work harder to get the hysterical woman with MS to slither out of her wheelchair...

    Remember they locked up Galileo,
    and Pasteur was a nutcase for saying "the antigen is nothing, the terrain is everything".

    and Samelweiss was proven correct.
    and lastly,
    "All truth goes through at least three steps"
    First, it is ridiculed,
    Second, it is vehemently denied

    Third, it is accepted as being self evident..."

    ciao for now.
  8. Cort

    Cort Phoenix Rising Founder

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    Tom Hennessey is back! Taking no prisoners as usual. How much we have missed by Tom's being so sick all these years! Breaks my heart. :(:(:(

    Whether or not Tom is right about XMRV (I sincerely hope he isn't) its very good to hear his oh so distinctive voice again :Retro smile:
  9. Krizani

    Krizani

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    I've been working my way through the CD set of the latest Invest in ME conference in London that was this last spring. During the roundtable discussion both Dr. Klimas and Dr. Cheney said that they have had a bunch of young men (adolescent to early 30's I'm guessing) with CFS show up in their practices since the XMRV study.

    One of the problems that they are facing is untangling the CFS from some of these young men that have been medicated for years with psychiatric drugs (presumably in response to assumed ADD/ADHD, etc). What a nightmare for all concerned!

    So I guess the women are hysterics (after all, MS was called Hysterical Paralysis and many MS patients weren't released from mental hospitals until MRI imaging came along, not so long ago), and the boys are behavior problems in school. Cripes.

    Where is Osler when you need him most?
  10. Sean

    Sean Senior Member

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    Not sure what your point is here.

    That quote is usually reported as a dramatic deathbed conversion, but there is no good evidence that Pasteur actually said that, at least not on his deathbed. His main biographer, Ren Vallery-Radot, (his son-in-law, and the only biographer who both knew him well personally, and was actually with him during his last days), does not report him saying it.

    The description in Vallery-Radot's biography of Pasteur's last days on his deathbed is two short paragraphs long, it reports nothing remotely like the above quote. (The biography is available online for free, just Google 'The Life of Pasteur'.)

    The last week in September he was no longer strong enough to leave his bed, his weakness was extreme. On September 27, as he was offered a cup of milk : " I cannot," he murmured ; his eyes looked around him with an unspeakable expression of resignation, love and farewell. His head fell back on the pillows, and he slept; but, after this delusive rest, suddenly came the gaspings of agony. For twenty-four hours he remained motionless, his eyes closed, his body almost entirely paralyzed ; one of his hands rested in that of Mme. Pasteur, the other held a crucifix.

    Thus, surrounded by his family and disciples, in this room of almost monastic simplicity, on Saturday, September 28, 1895, at 4.40 in the afternoon, very peacefully, he passed away.


    EDIT: I recall it was Claude Bernard, who said "The terrain is everything; the germ is nothing".
  11. dannybex

    dannybex Senior Member

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    I think Tom makes many excellent points, esp regarding how so many other factors may be involved besides XMRV, as these could be very important, even if someone tests as XMRV positive, and especially if they test negative.

    With the exception of Lisa, there is almost no discussion of environmental factors, chemical exposures, etc., on this (or any) CFS/ME message board. The last I read, Tom had partially recovered (?) after being bedbound/housebound for years. I hope he'll tell his story...give us all an update on how he's doing, and what helped him improve.

    The 'terrain' can be damaged by many other things besides viruses or bacteria.
  12. Impish

    Impish Senior Member

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    I doubt that they are being medicated for ADD/ADHD. Maybe depression or something else. The symptoms for ADD/ADHD are pretty much EXACTLY the opposite of CFS.
  13. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I wonder then what the time-frame is? Perhaps some who thought they contracted xmrv through the blood supply may not have. Particularly if it takes years to make someone sick
  14. Sasha

    Sasha Fine, thank you

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    How interesting! Dr Singh sounds great. Thanks for the summary, Cort.

    Are these 75 corpses random, so to speak? Really the first 75 she can get her hands on? That is, not CFS people or people who have died of one disease in particular that might lead one to suspect that they would have been XMRV+? Given that the background population level of XMRV appears to be about 5% (based on the WPI/Alter studies), it seems a bit of a strange thing to go looking among random bodies.

    On the other hand, the 5% estimate may be lower than the real population level, given that current tests are probably insensitive; and even at 5% you'd expect to find three or four XMRV+ people among those 75. Maybe the point is to see if those few XMRV+ are consistent in where the XMRV reservoir is?

    I agree, Cort, that it sounds an expensive study and I'm curious about the rationale.
  15. Cort

    Cort Phoenix Rising Founder

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    Good points. My understanding was the first autopsies that come in the door. It does sound expensive and it does make one wonder if she has some information we don't know about. She is looking very carefully and the tests are improving all the time. Could it be that she has found more XMRV than expected in the controls???
  16. Sasha

    Sasha Fine, thank you

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    I suppose that, short of doing an autopsy on those extremely rare cases of people who have died with (not necessarily of) CFS and left their bodies to science, Dr Singh's approach must be about the only feasible way currently of finding XMRV tissue reservoirs. I suppose even if there are only three or four XMRV+ bodies in her sample, if the same tissues are showing up as being the reservoirs, that would be very informative. And maybe there is all sorts of stuff that she could find out from a single XMRV+ body that she couldn't from a live patient, so even a single case among her 75 could be very valuable.

    Maybe she is cheaply sharing them somehow! It just seems like a very expensive thing to do but maybe each body can be used in several studies. Or maybe they are ten a penny!

    When the CFS biobanks go live, we must all be sure to sign up for donating ourselves so that others can benefit. It's a bummer not to be able to donate blood or organs in the usual way in case we infect people but we can at least be useful once we've kicked the bucket.
  17. Enid

    Enid Senior Member

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    It's a good start, didn't they find here in the UK "inflammation of the basal root ganglia" in a well known autopsy - keep it coming !. with encouragement. But as who said "end on organ collapse may result too". Offered my old bod ten years ago.
  18. Enid

    Enid Senior Member

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    Anyone with such a smile prepared to "tackle" something confounding most of the Scientists still has to be admired. Hope she succeeds.
  19. ukxmrv

    ukxmrv Senior Member

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    We seem to have had a lot of patient deaths in the UK in the last year- particuarly suicides but other tragic deaths as well. People seem very supportive of the tissue bank idea mooted for the UK. I don't think that deaths with donation will be that rare.
  20. Enid

    Enid Senior Member

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    Rereading - another great researcher on our list.

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