1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Part 2: Brain Cells Making us Sick? Messed up microglia could be driving symptoms
Simon McGrath looks at theories that microglia, the brain's immune cells, might be overactive and driving the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Article: XMRV at the Fed: Conspiracy or Confusion?

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 10, 2010.

  1. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    Thomas R. Frieden, MD, MPH - Contact CDC Director re XMRV and CFIDS

    One last comment: I am one of those people who takes the most shots at the CDC on this forum. I want it made clear that I do not want the CDC damaged, destroyed or dismantled. I want the CDC to be fixed, dead wood gotten rid of, the best and brightest brought in and allowed to do the right science/research w/o politics involved. I want the CDC to go back to being one of our most important and critical health organizations. None of the previous directors could get the CDC cleaned up and straightened out. In fact, most of them made a bigger mess of it. I pray that the current guy (Thomas R. Frieden, MD, MPH) has the strength of will and character to do what is right and best for the CDC and the American public - despite the politics right now. If Frieden were to do what was right and best for CFIDS/XMRV, I do believe that the CDC's credibility would be returned and the American public would go back to listening to what comes out of the CDC.

    Are you all aware of the number of Swine Flu vaccines that have been destroyed due to overproduction and non-use? The numbers will hit over $500 million lost to incinerated H1N1 vaccines in the US alone (See below for article). Why so much waste? The American public stopped listening and believing what came out of the CDC and then they could not give those vaccines away for free - the drug stores in my area were giving them away free and no one was in the line to get the vaccine.

    I recognize that there is no crystal ball for knowing what viruses are going to turn deadly and hit in major waves. But, the CDC has yet to call it right in the last couple of decades. This tells me something is so terribly wrong at the CDC and it must be cleaned up, the priorities re-looked at (as Frieden is doing), the budgets cleaned up and made transparent with appropriate paper trails, and politics left out of any and all research done by the CDC. And this means the CFIDS and XMRV programs and the politics that have damaged super critical research on both the disease and the retrovirus(es).

    I so hope that Frieden is strong enough and smart enough to stop the politics that go on at the CDC, once and for all. Frieden is THE guy that we need to get at and make it clear to him the damage that has been done to the CDC because of little programs like CFS. ((Small funding for CFS was deliberate in my opinion to keep it under the funding/inspection radar and reduced by Reeves each year to ensure CFS was a low priority/low funded program with no oversight so they could keep CFS a crazy/lazy disease)).

    Enough rambling. Email Frieden and ask that he personally takes a good, long look at the whole CFS program and the XMRV study. We need him to do his job for CFIDS and the rest of the public.



    ----------------------------------------------------------------------------------------
    Swine Flu Vaccine: 40 Millions Doses To Be Burned
    MIKE STOBBE | 07/ 1/10 04:17 PM |
    http://www.huffingtonpost.com/2010/07/01/swine-flu-vaccine-40-mill_n_632023.html

    ATLANTA About a quarter of the swine flu vaccine produced for the U.S. public has expired meaning that a whopping 40 million doses worth about $260 million are being written off as trash.
    "It's a lot, by historical standards," said Jerry Weir, who oversees vaccine research and review for the U.S. Food and Drug Administration.
    The outdated vaccine, some of which expired Wednesday, will be incinerated. The amount, as much as four times the usual leftover seasonal flu vaccine, likely sets a record. And that's not even all of it.
    About 30 million more doses will expire later and may go unused, according to one government estimate. If all that vaccine expires, more than 43 percent of the supply for the U.S. public will have gone to waste.
    Federal officials defended the huge purchase as a necessary risk in the face of a never-before-seen virus. Many health experts had feared the new flu could be the deadly global epidemic they had long warned about, but it ended up killing fewer people than seasonal flu.
    "Although there were many doses of vaccine that went unused, it was much more appropriate to have been prepared for the worst case scenario than to have had too few doses," said Bill Hall, spokesman for U.S. Department of Health and Human Services.
    Most leading health experts generally agree with that.
    "We were faced with the first pandemic we'd had in 40 years. We had to ensure there would be enough vaccine for our nation," said Dr. Mark Mulligan, an Emory University researcher who was involved in testing the vaccine.
    Many average Americans also agreed earlier this year, said Robert Blendon, a Harvard University professor who conducts polls on public health. He said a Harvard poll in January found that 59 percent of Americans would prefer the flu vaccine be over-ordered to ensure enough was available, even if it meant doses went unused.
    Millions of doses of flu vaccine typically go unused every year and are marked for burning, but in recent years the leftovers amounted to closer to 10 percent of the supply, rather than the 25 percent expiring now. Government flu experts couldn't recall throwing away anything close to 40 million doses before.
    The new H1N1 swine flu emerged in April last year, hitting children and young adults particularly hard. It was difficult to predict how deadly it might be or how easily it might spread. Federal health officials pushed five vaccine manufacturers to quickly produce a vaccine. What's more, they wanted a lot of it many experts thought most people would need two doses for it to work.
    The government placed three orders last year for a combined total of nearly 200 million doses an unprecedented amount and almost double the amount of vaccine made in recent years for seasonal flu.
    About 162 million doses were meant for the general public. Another 36 million included doses for the military and other countries.
    But demand never took off, for several reasons:
    _Tests of the vaccine soon showed only one dose was enough to protect most people.
    _Much of the vaccine was not ready until late 2009, after the largest wave of swine flu illnesses passed.
    _Swine flu turned out not to be as deadly as was first feared. About 12,000 deaths have been attributed to it or roughly a third of the estimated annual deaths from seasonal flu.So while people were waiting hours for swine flu vaccinations in some cities in October and November, by January local health departments were trying gimmicks to get anyone at all to come in for a shot.Government officials have known for months that they were looking at a huge surplus. According to an Associated Press calculation based on federal purchasing information, the dollar value of the 40 million expired doses is about $261 million. The government didn't release an official figure, but Hall said the AP estimate was approximately correct.
    In Europe, where nations also found themselves with millions of unused doses, some commentators have attacked the World Health Organization, which declared swine flu a global epidemic, or pandemic. The critics have questioned the motivation of some WHO advisers who had links to the pharmaceutical industry.Some critics have simply lamented that a lot of anxiety was raised and money wasted, not just during the swine flu scare but also in government responses to bird flu and SARS, a respiratory virus that swept parts of Asia in 2003.
    "Each time the so-called experts told us that millions of people would be killed worldwide by the respective viruses. We have learned that the experts were utterly wrong," said Dr. Ulrich Keil, a professor at Germany's prestigious University of Muenster and a WHO adviser.
    "This behavior is irresponsible because the angst campaigns ... confuse the priority setting in public health," he said. The death toll from influenza epidemics is much smaller than the number killed annually by chronic illnesses like heart disease, cancer, stroke and diabetes, he added, in an e-mail.
    Unused flu vaccine is a common problem. The June 30 expiration date is set by the FDA and has less to do with the vaccine's shelf life than the desire to tweak the recipe each year to protect against the three flu strains expected to cause the most illness.
    "It's not necessarily because it's degraded or not potent," Mulligan said.
    In the past year, about 114 million doses of seasonal flu vaccine were distributed. The government thinks most of that was used demand was unusually high because of fears about swine flu.
    In the flu vaccination campaign for this coming fall, swine flu vaccine is being combined with two seasonal strains in single doses. Manufacturers have told the government they expect to make about 170 million doses.
    An influential government advisory panel this year recommended that virtually all Americans get flu shots each year. Still, that doesn't mean it will all get used.
    "No doubt there will be unused doses. This happens every time," said Dr. John Treanor, an immunology specialist at the University of Rochester Medical Center.
  2. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    198
    Likes:
    75
    Anyone here think that CDC owes DeFritas back pay to '93? Could be personally paid for by certain people at CDC, not the taxpayers.

    Just a thought.
  3. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    What does this have to do with the Fed?
  4. HowToEscape?

    HowToEscape? Senior Member

    Messages:
    198
    Likes:
    75
    He's got a perfect track record: best friend an infectious disease could ask for.
  5. Thomas_Germany

    Thomas_Germany

    Messages:
    2
    Likes:
    0
    WE SHOULD GET ALTERNATIVE MEDIA INVOLVED. The witholding of scientific information of such relevance is something unheard of. Someone more prolific in the community and more fluent in english than me should send a note to Amy Goodman's www.democracynow.org so that they are at least aware of what is going on.
  6. Thomas_Germany

    Thomas_Germany

    Messages:
    2
    Likes:
    0
    Regarding my previous comment to get alternative media / journalists involved: Can someone briefly chronicle the events since the publishing of the Lombardi Paper end of 2009.
    I have a hard time myself of figuring out who published what since then. (Haven't some of the European groups finding negative results been interconnected amongst each other?)
    A brief overview of what happened would be very helpful for any journalist willing to take on the story.
  7. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Hi Thomas, welcome to the forums.

    I agree it would be good to have such short overviews of the key information. XMRV Buzz and Phoenix Rising are a good place to find the info but it would be better if it was gathered together.

    These links may be helpful...

    Neuroskeptic has a decent list of all the XMRV studies to date; the description sometimes lacks a bit of depth and understanding of ME/CFS itself, but the list of studies is clearly presented.
    However they seem to be missing the German study that found XMRV in respiratory tracts of immune-compromised patients - it would be worthwhile pointing out these issues to the author as it's a well-balanced and clearly laid-out resource other than these points:
    http://neuroskeptic.blogspot.com/2010/02/case-of-missing-retrovirus.html

    Virology blog also has lots of info:
    http://www.virology.ws/2010/06/30/publication-of-xmrv-papers-should-not-be-blocked

    and Slightly Alive is one well-written patient/advocate perspective giving a glimpse into the large backplot to this story:
    http://slightlyalive.blogspot.com/2010_01_17_archive.html

    The key distinction, which should not really need pointing out but apparently is the elephant in the room that journalists and sceptic bloggers alike tend to avoid mentioning...is that several studies have all found broadly similar 3-7% percentages of XMRV in the background population, and more in their studiy groups, while others have found nothing - no XMRV at all, anywhere - using different detection techniques. These discrepancies apply to the prostate cancer studies as much as they do to the CFS studies, so there is clearly some novel complexity to be explained as to why XMRV can be hard to detect, or conceivably it is geographically restricted, but the studies that have failed to find any XMRV at all - using different techniques and cohorts - can't really be said to refute the CFS/XMRV connection...and yet it tends to be suggested in reports that they do refute it (often quite dishonestly actually) because the headline concept is "negative study" rather than "failed study", which would perhaps be more appropriate...

    The best place for details is in the discussion threads about each of the individual studies - for example if you want to find out more about the Groom or Erlwein study, a search for threads with those names in the titles will probably find the thread where the community discussed their reactions to each one. Some of them are monster-long actually...enjoy... :)

    PS: This is another good overview:
    http://www.reddit.com/r/science/comments/cn0mj/us_health_officials_obstructing_scientific_process/
  8. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    266
    Long Beach, CA
    William Reeves did not blow the whistle on him, Walter Gunn did. Only after Congressman Jerrold Nadler had gotten a GAO investigation (something like 2 years after Walter Gunn had stepped forward with the information) did William Reeves claim whistleblower status. He "announced" the information that funds were being misappropriated after it had already come out in Hillary Johnson's book Osler's Web, and had been picked up by major news outlets. But by claiming whistleblower status for something that had already come out, Reeves ensured that he couldn't be fired. It was a sleazy move, IMO, not a heroic one.

    Walter Gunn was the one with a conscience. He was the one who thought it was wrong that the CDC officials were lying to Congress, misappropriating funds earmarked for CFS research, refusing to do basic research on the disease, ridiculing patients. He recognized that it was corruption and tried first to correct it from within the organization and when that didn't work, ultimately spoke to a journalist. He ended up being edged out of his job, and Reeves took his place.

    We shouldn't ever forget Walter Gunn and what he did for us.
  9. CBS

    CBS Senior Member

    Messages:
    1,364
    Likes:
    246
    Western US
    Ixchelkali,

    Thanks for the reminder! There have been a few (far too few) who have stood up for CFS patients at significant cost to themselves.

    CBS
  10. Sean

    Sean Senior Member

    Messages:
    1,222
    Likes:
    1,985
    I didn't know this. Not exactly a good look for Reeves, is it.
  11. Cloud

    Cloud Guest




    I certainly agree with your first lines and if I may, add my view to the latter........

    "Common human behavior" may be true in general, but in medical health care this particular kind of behavior would be considered negligence. Doctors are (successfully) sued all the time for missing an obvious diagnosis. Worse (as in our situation), if they deliberately looked the other way, in the face of overwhelming evidence of a disease process, and it causes harm, that can become criminal.

    In medical health care, we are held to the strictest of standards, professionalism, and accountability, as we should be. So why would we accept less from our leading national health institutions? Even a "conspiracy to not investigate" (for whatever reason) is negligent behavior in medical health care. I see no valid reason to allow our major health institutions grace for actions that I would be professionally and legally chastised for as a Nurse.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Yes - never forget Dr. Gunn - a staunch, staunch ally in the CDC early on. He later worked on validating Dr. DeFreitas test with the CFIDS Association. When the last test didn't work out he wondered if he'd thrown away at least the very end of his career over a mirage, unfortunately. I don't believe that he was kicked out - he basically left in fury.

    It sounds like Dr. Gunn started getting the information out - which doesn't surprise me at all - they had alot of trouble keeping him quiet (they certainly tried). He, however, was long gone by the time the GAO investigation occurred. My understanding is that Dr. Reeves was the CDC official who stepped forward and provided proof that the Director Mahy was lying and that the CDC had spent millions of dollars intended for CFS on other disorders.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Also go to the XMRV tab on the left hand side of the Front Page and start reading..there's alot there. :eek:
  14. biophile

    biophile Places I'd rather be.

    Messages:
    1,387
    Likes:
    4,584
    I agree, that's how it should be. I totally support the patient community seeking action, and they may be able to hook some prize catches, but I just have this gut feeling that medical curmudegeons will generally be getting away with whatever has happened over the last 25+ years, largely due to the confusion and apathy and poor standards towards ME/CFS. It may be difficult to prove past negligence. Even caring doctors usually cannot help their patients much beyond diagnosis even if they wanted to. Some other doctors refused to provide even the most basic palliative care and even insulted or humiliated their patients, but I would be surprised if any of these doctors were actually reprimanded for past actions. However, if XMRV pans out and they don't respond adequately due to past habits/attitudes (which I'm guessing will happen), then they will obviously be more culpable.
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,297
    Likes:
    6,283
    USA
    When I was a young female engineer in the '80s, we spent a lot of energy teaching male engineers who had been in the field a few years that despite their history as an all-male profession, we were just as good as engineers as our male counterparts. Part of the game in those days. Many came around, some easily, some resisting, but they came around. But there were always those crumudegeons.... We used to say,

    "You just have to wait 'til some of them die"

    There will be a 10-15 year period while our medical old curmudegeons wield some power. Most will come around, though. We'll just have to wait while the rest of them die off. ;)
  16. biophile

    biophile Places I'd rather be.

    Messages:
    1,387
    Likes:
    4,584
    Perhaps there will be a few "death bed" conversions and confessions!
  17. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,456
    Likes:
    1,968
    London
    This is where my "Truth and Reconciliation" fantasy comes to play. Something along the lines of a court holding hearings and being able to call witnesses.
  18. Cloud

    Cloud Guest

    Sometimes it takes a huge threat to security for awareness to change.....like with a fish not understanding it's in water, until it's removed. HIV wasn't taken seriously until it was widespread understood as a lethal threat, easily transmitted, and in the blood supply......Then the medical community and society at large did a dramatic shift in perception. I find it surprising this hasn't happened yet with xmrv.

    Lol, the fish out of water analogy reminds me of an old story of a little fish who was caught by a fisherman. The fisherman threw the little fish back in the water. Little fish returned to it's family and friends and told a story of being pulled into a world where everything was different and had a giant that sent him back home. The little fish's buddies killed him because they were frightened by such grandiose illusions that threatened their perception of reality.
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    5,297
    Likes:
    6,283
    USA
    Cloud points out the one area where I'm willing (so far) to see a conspiracy of any magnitude -- and it's a pathetic one. I suspect the DHHS completely missed the clues for XMRV, thanks primarily on its reliance on the CDC as a watchdog for serious infectious diseases. Now the cat's out of the bag and the DHHS is scrambling to get their institutional and personal brains around XMRV. They see, suddenly, a massive problem of control, information-gathering, public information, research, etc that should have been done over the course of several years about 20 years ago.

    I imagine the DHHS standing on the railroad tracks, back to the oncoming train. The CDC is facing them (and the train) saying, "There is no train. There is no train." [thanks Mark]

    Now, at the last minute DHHS turns around and.... THERE'S A TRAIN! What they want, more than anything at this moment, is to slow things down, give them a moment to think, to gather their resources, to act. Well, it's probably too late, but who'd be surprised if they weren't trying to slow things down, "just a little", to give them time to... to... well.... do anything but just stand there.

    Ta-da! Sick's Conspiracy Theory of the Moment (subject to change at any time)
  20. Sean

    Sean Senior Member

    Messages:
    1,222
    Likes:
    1,985
    Agree with Sickofcfs.

    It is not that the DHHS are trying to cover it up, it is that they have been caught with their pants down, thanks to the CDC, and are trying to hit the temporary pause button until they can figure out what the hell to do about it.

    I will bet that the DHHS are not very happy with the CDC right now, and harsh words are being said behind the scenes. They have already removed the CFS team leader (Reeves), a standard preliminary step to a major overhaul and change of direction.

    I think all of this indicates just how seriously they are taking it. These are not just superficial face saving pr tactics.

See more popular forum discussions.

Share This Page