FDA and NIH confirm WPI XMRV findings

A press release from the Netherlands indicates that the FDA and NIH have independently confirmed the association of XMRV with chronic fatigue syndrome as published last fall in Science. Apparently two journalists for the Dutch magazine ORTHO obtained a copy of a lecture by Dr. Harvey Alter in Zagreb which confirms these findings. According to Newswire.com:

The ORTHO journalists were able to obtain a pdf document of the lecture given by Harvey Alter at the IPFA/PEI 17th Workshop on ‘Surveillance and screening of Blood Borne Pathogens’ in Zagreb. The International Plasma Fractionation Association (IPFA) represents the not-for-profit organizations around the world involved in plasma fractionation. The IPFA is based in Amsterdam, the Netherlands.

The highly-experienced Dr. Harvey Alter is Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. “The data in the Lombardi, et al Science manuscript are extremely strong and likely true, despite the controversy”, was one comment on the XMRV findings reported by Alter in Zagreb. “Although blood transmission to humans has not been proved, it is probable. The association with CFS is very strong, but causality not proved. XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%‐7%. We (FDA & NIH) have independently confirmed the Lombardi group findings.”

ORTHO contacted Dr. Harvey Alter today for a reaction. He did not want to comment, but confirmed that a paper is soon to be published.

I’m not entirely sure what it means to have confirmed the Lombardi group findings. Did the FDA and NIH use the same clinical specimens, or independently collected ones? We’ll have to wait for the article to appear to find out.

Comments on this entry are closed.

  • SACInfoTech 22 June 2010, 11:52 pm

    Dr. Racaniello, Thank you for posting this.

    Here is a link to Dr. Alter's presentation at the 2010 IPFA/PEI workshop “Surveillance and screening of Blood Borne Pathogens” (a pdf of his presentation): http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/

    Comments about XMRV are on page 10. Dr. Alter also refers to XMRV and the risk to the blood supply on page 9.

  • comp1999 22 June 2010, 11:54 pm

    I really appreciate you covering this disease (CFS) and its association with XMRV. Level headed analysis and discussion like what you provide on this site is very helpful. Thanks!

  • Guest 23 June 2010, 12:00 am

    The FDA and NIH did their work entirely independently of the authors of last October's groundbreaking Science paper by Lombardi et al. Their findings will be published in a very reputable journal very soon!

  • Guest2 23 June 2010, 12:03 am

    Dr. Racaniello,

    I wonder if you can comment on wether the current vaccine in use in cats for FeLV has ever been tested against MLV or XMRV? Based on the current knowledge of how these viruses work, what are the chances that this already available vaccine could be made to work in humans for XMRV?

  • Robin 23 June 2010, 12:06 am

    Dr. Racaniello, I'd like to thank you for covering this too. I'm a patient who's been rotting away in a bedroom for 15 years. For the first time I've had hope that maybe someday there will be a treatment and that I don't have to be a burden on my family (and the American taxpayer.) We're still on the rollercoaster but maybe the ride is over soon.

  • ahimsa9999 23 June 2010, 12:08 am

    I had trouble with the link posted by SACInfoTech (spaces in the URL weren't converted correctly?). I hope this link will work:


  • SACInfoTech 23 June 2010, 12:18 am
  • SACInfoTech 23 June 2010, 12:23 am

    The problem is the spaces: http://www.sanquin.nl/ipfa/Upcoming_Events.nsf/

  • Jberns78 23 June 2010, 12:45 am

    Appreciate you covering this important topic. I see so many patients afflicted with CFS. It'd be wonderful to know a definitive cause at last.

  • Gay Lyon 23 June 2010, 4:27 am

    Thank you, Dr Racaniello. This sounds like big news. Can't wait to read the papers.

    Care to speculate/comment on his “and related MLVs are in the donor supply” remark? Would that be your everyday, garden-variety benign MLVs? I hope?

  • Max 23 June 2010, 4:47 am

    VINDICATION!!! Thank you for posting this very quickly Vincent.

  • Guest 23 June 2010, 9:39 am

    The FDA and NIH did not use the same clinical specimens as Lombardi, but used indepedently collected ones and verified by 2 independent labs.

  • Justin Reilly,esq. 23 June 2010, 6:26 pm

    Prof. Racaniello,

    We ME/XAND/CFIDS patients have been so abused by NIH, CDC, a few UK psychiatrists and the UK govt. Please speak out as a respected scientist that this is a very important finding that the above have tried through defamation and distortion (their usual MO) to derail. This is exactly what happened to the DeFreitas RV in 1991. We need immediate research into not only ME and XMRV but also the DeFreitas RV!

    And of course we only get $3M per year while eskimo and native american health gets $177M. This is a 25 year pandemic of a devastating neuro-immune disease. Please speak out on our behalf! We are so disabled and abused that we can not. People are being infected every day with these retroviruses. Thank you!

  • michael 23 June 2010, 11:58 pm

    I ditto Justin's request. We have been seriously ill, often disabled, sometimes home bound for years and years and the medical establishment has scoffed at our plight. In 1992, early in my illness, I saw an HIV researcher in NYC as a CFS patient. He told me he'd call his research friends around the country to see what they thought, were doing re: CFS. A week later, he told me that they'd all said the government was actively suppressing research into CFS. I asked Why? Easy answer, he replied. Money. They don't want another expensive disease. They're only dealing with AIDS because people are dying horrifically in public. CFS is easy to dismiss: 2/3's or more patients are women; symptoms are invisible; no diagnostic marker; people don't seem to be dying.

    I've never forgotten that conversation in all these often harrowing years of illness. I'm a trained clinical psychologist so I know a disease from an emotional disorder. My antibody titres have long been sky high for EBV, CMV, HHV6 . . . it was obvious this was a viral disease of some kind. This was probably never necessary, an epidemic that might have been stopped in the 1980s or 1990s. And, still, nothing in the media!! We need every responsible physician to start howling about this.

    michael allen, ph.d.

  • Kelly 24 June 2010, 3:45 pm

    Although the focus has been on Dr. Alter's remarks, United States Red Cross VP, R&D Roger Dodd also presented on XMRV and CFS.

    Among his slides were:

    Why look for XMRV in CFS?

    •CFS onset often temporally associated with apparent acute infection
    •Apparent outbreaks of CFS
    •Cohort studies of acute infections suggest that a proportion will develop CFS
    •Alterations of RNAse-L pathway seen in both CaP and CFS

    On another slide he noted other viruses presumptively associated with CFS:

    •Epstein-Barr virus
    •HHV-6 and 7
    •B19 parvovirus
    •Hepatitis C virus
    •Chlamydia pneumoniae
    •Coxiella burnetii
    •Brucella sp.
    •Toxoplasma gondii

    He also presented a table of putative associations of human diseases with many different retroviruses – some proven, some not, some controversial, some no longer controversial.

    Full pdf at: http://www.ipfa.nl/ipfa/Upcoming_Events.nsf/0/c

  • jillba 24 June 2010, 5:23 pm

    My thought exactly. What is meant by related MLV's? I am very interested in this.

  • profvrr 24 June 2010, 5:52 pm

    I don't know what Dr. Alter means by 'related MLVs' as I haven't seen the data. Therefore take the following as speculation. My guess is that there are likely to be distinct strains of XMRV, and would all be considered related to MLV, hence his statement.

  • linda 25 June 2010, 7:58 am

    i agree…non biased, objective coverage of this disasterous epidemic. 18 yr sufferer here, bedbound.

  • Laura10 28 June 2010, 9:56 pm
  • Andreyam 28 June 2010, 11:27 pm

    Is there a ball park time for when it will be published?

  • Justin Reilly,esq. 29 June 2010, 10:42 pm

    I used to go to an internist who was head of a major state's AIDS response in the 80s. Years ago he said to me that “CDC did the exact same thing with AIDS as they're doing with “CFS”- they put their absolute worst people on it, didn't fund it and ignored it as long as they could. Then people started dying and they were forced to do something. You aren't dying so they can still ignore you.”

  • Andreyam 30 June 2010, 5:06 am

    Alter's paper with the above findings is being held from publication because the CDC couldn't find XMRV http://online.wsj.com/article/SB100014240527487

  • Jean Harrison 8 July 2010, 2:03 am

    Please help us in getting the PNAS study by the NIH & FDA published! It's an outrage that it's being held up. If this is the way the government runs health care now, how will it be when they have more control?

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