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!
August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
Discuss the article on the Forums.

Article: WPI Says No to Retraction Request/ Levy Study Dashes Hopes /NCI Shuts the Door on XMRV

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 1, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    649
    Likes:
    995
  2. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Hmmm...despite all this they still can't even agree on how to define CFS - as Lipkin himself recently said. The more things change the more they stay the same....
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    432
    Raleigh, NC
    :D That actually gave me a laugh....some things are just too hard for Science. I think XMRV has shown us the kind of effort the federal govt and the research establishment can put into something when they want to...... Pubmed brings up 120 papers on XMRV or associated with it since the WPI paper in Oct of 2009......
  4. liquid sky

    liquid sky Senior Member

    Messages:
    349
    Likes:
    155
    If they drop retroviral research in ME, I don't think there will be any silver linings. It will be back to GET and CBT, basically no real treatment. It is too bad that some folks are quite willing to allow others to suffer as long as it does not affect them and theirs.

    True ME is obviously caused by infection and there are only 2 possible reasons for the blackballing of WPI. Either they discovered something that others wish to remain hidden or others want to steal their discovery for their own profit.

    Time will tell. I am not sure I will be here to see it, but I do believe in justice/karma.
  5. WillowJ

    WillowJ Senior Member

    Messages:
    2,896
    Likes:
    2,304
    WA, USA
    http://www.bloomberg.com/news/2011-...-ban-may-have-been-flawed.html?forumid=331851

    pressure on the government? good grief, Levy, do you not know the government has thrown us in the dungeon for the past three decades? This is money that should have been spent on ME/CFS in any case, XMRV or no XMRV... and similar money should be spent on this disease every month.
  6. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    WPI needs to concentrate on enterovirus infections as the cause of ME, history clearly shows that they are implicated in all outbreaks.

    This is common sense.
  7. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi Willow

    Thanks for posting a link to that article.

    Levy was suspicious? Of what?

    Yes, given the history of HIV, who would have thought it warranted consideration or should have even been entertained? Completely shocking and surprising.:rolleyes:


    He hasn't been around anything quite so dramatic, misleading or misunderstood?


    No I suppose not. He has had little or nothing to do with ME CFS where such is common place sadly.


    There are financial ramifications, and medical and health ramifications, I hear you say Mr Levy?


    Health implications. ..Oh yes - indeed there are Mr Levy and they have enormous ramificaitons


    Financial you say Mr Levy? As in, less money for your scientific areas of choice? :rolleyes:

    Common sense is not so common, unfortunately.

    With the aggressive stance against WPI and XMRV, I fear that a similar campaign would be mounted against research disproving this connection too Tulip.

    It is conveniently overlooked by Levy et al, that the lombardi study was done in association with the NCI and Cleeveland Clinic. Further, what about Lo Alters work? Was Levy surprised and sucispicious about that too? Pfff!

    Lets face it, the reason there are over reaching statements coming from some quaters on the science associated with XMRV is because they believe CFS is a psycho somatic illness, with no real underlying biological cause and or they want it to remain known as such. ie XMRV is only found in real illnesses like prostate cancer! And sadly, ME is burried in there.

    Further study on enteroviruses would be welcome, but I dont think it is going to 'save the day''. There is sufficient literature on enteroviruses as the cause of ME, yet it is being ignored.

    Based on watching developments unfold with regard to XMRV and the misleading statements being thrown out by scientists in this area, I dont think research is the answer anymore.
  8. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks for the "current" situation in a nutshell Cort - hopefully time will tell. Never doubted ME/CFS viral anyway. KdeM seems to be finding and treating viruses. (MLVs ? same family) so far. On a lighter note much enjoyed the elusive "beastie" in your heading !. Also one has to ask why it is there are so many XRMV positives (? KdeM tests).
  9. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    When that paper came out I was totally surprised and suspicious, Levy said today in a telephone interview. Who knew there would be pressure on the government to do these expensive studies? Ive never been around anything quite so dramatic and misleading and misunderstood for so long. There are financial ramifications, and medical and health ramifications.

    What a peculiar statement! I can't make hide nor hair of what it means.
  10. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    770
    Check out the Invest in ME 2011 conference report page. http://www.investinme/ Look under...Mikovits findings of MLVs in CFS/ME patients.
  11. beaker

    beaker CFS/ME 1986

    Messages:
    388
    Likes:
    567
    USA
    Back in the late 80's levy worked w/ carol jessop. He conducted and published some immune studies on this plague. He also collaborated with Kilmas . Here's one I dug up :

    http://www.thelancet.com/journals/lancet/article/PII0140-6736(91)91440-6/abstract

    This part is fuzzy memory-- maybe someone else can remember and fill in the pieces -- I seem to remember for awhile there was a clinic at UCSF he supported. Loss of funding shut it down.

    Kinda surprised at his comments. He knows this illness. Maybe it was somehow taken out of context....
    "...Ive never been around anything quite so dramatic and misleading and misunderstood for so long. There are financial ramifications, and medical and health ramifications.
    maybe he is referring to cfs/me and not xmrv specifically?
    or maybe that is wishful thinking on my part....

    I'm with Francelle, all so strange and peculiar.
  12. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    840
    UK
    Thanks currer for the Iime link - XMRV not out of the frame by a long chalk - still very much part of the picture.
  13. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Thanks Currer for bringing this to our attention
  14. JPV

    JPV Senior Member

    Messages:
    270
    Likes:
    48
    You seemed to have left out a 3rd and probably the most likely reason... maybe WPI is just plain wrong.

    And it's not "obviously" caused by infection. Many people believe it may be caused by environmental toxins such as heavy metals.
  15. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    If WPI are just plain wrong, then how do you explain the Bieger study?

  16. Camilla

    Camilla

    Messages:
    30
    Likes:
    16
    The question is: Did the help from WPI involve any laboratory materials at all? Because in that case, it could be that contaminated material was then transmitted to the German lab, explaining the posivites in the second try.
  17. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    That is the obvious question to ask Camilla. I wish we knew! Exciting if no laboratory materials were exchanged though. I have wanted to ask this same question about the KDM testing in Belgium. Have they used reagents or lab materials from the WPI?

    The other question I want to ask is how can it be that one lab (WPI) has some select methodology to find this retrovirus that other labs & retrovirologists haven't got or worked out? It's outside of my field of expertise so not really sure how it works. Is it EVEN possible?
  18. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,311
    Likes:
    1,715
    London
    I had a talk to someone at the IiME conference (can't say who). Patient select was supposedly very important in the Beiger study. That and a change in their techniques made the difference.

    Yes, obviously if a contaminated sample of some sort was sent or taken to Germany it could cause problems. Dr Beiger is well aware of what they obvious problems are and his is testing for contamination.

    Francelle, deciding the methodology is very important, hence the Blood Working Group. If you read the reports from that you will see that even the day the blood samples are processed on made a big difference in results.
  19. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    112
    Good piece, Cort, as usual :D
  20. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    432
    Raleigh, NC
    I agree...It's such strange wording that I wonder if the reporter got the jist of it right and the wording wrong. I think he was always suspicious the retroviral connection perhaps given that CFS has never seemed to be contagious - and he's clearly upset about the Lipkin study being done....but he';s way out of the loop about putting pressure on the govt...of course pressure would be put on the govt....to do this in a conclusive fashion and thanks goodness for that....we deserve to have a definitive answer and its certainly the money to get one.

See more popular forum discussions.

Share This Page