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Demand a permanent halt to the multi lab Lipkin study

Discussion in 'Action Alerts and Advocacy' started by jace, Nov 9, 2011.

  1. jace

    jace Off the fence

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    As you may know, the Lipkin study is supposed to be the last word on HGRV research. There are serious concerns about this study, not least that a large amount of our miniscule research budget is to be spent on it. Now it seems that Judy M is excluded, and Frank Ruscetti is also not involved, the two scientists who actually know how to find the virus.

    Also consider that we also know, due to the accidental infection of children with X-SCID, (see page 8 and page 10 -11, section VII and VIII) that it is accepted that HGRVs cause disease in humans. And that the paper Paprotka et al. did not in any way present an argument in support of an impossible recombination event in a cell line.

    The letter below explains many of the issues as to why this study is superfluous and only a hinder to scientific progress.

    Please help in allowing science to progress without interference by sending this letter.
    ?


    Some contact details are below.

    If anyone has a better idea of who to send to please post it. It may be good to send to all of them if people can. Obviously the higher ups are more important.


    Francis Collins is director of the National Institutes of Health, Bethesda, Maryland 20892, USA. Email: francis.collins@nih.gov

    Contact NIH

    E-mail ?NIHinfo@od.nih.gov

    Phone? 301-496-4000, ?TTY 301-402-9612 (?Health Info Lines ?Media Contacts)

    Mail ?National Institutes of Health? 9000 Rockville Pike ?Bethesda, Maryland 20892
    ?Addresses for the Institutes and Centers

    kathleen.sebelius@hhs.gov
    francis.collins@nih.gov
    toni.scarpa@nih.gov
    hoshawb@csr.nih.gov
    http://www.whitehouse.gov/contact/
    President Obamas Science Advisor, John Holdren, at AskDrH@ostp.gov


    Thank you.
  2. Esther12

    Esther12 Senior Member

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    Who said that Ruscetti is not involved anymore?

    I didn't think that the cost of the study was coming from CFS budgets anyway?

    While there's already plenty of evidence against XMRV/HGRV/whatever being related to CFS, I think that we need one final (if negative) and thorough study to give those claiming XMRV/etc are related to CFS another chance to show this to be the case under blinded conditions, and Lipkin's study looks like a good attempt to do this.
    Kina and wdb like this.
  3. snowathlete

    snowathlete

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    Three things you should do to improve the letter:

    The letter starts off so negatively that no one is going to continue reading and taking it seriously. I would toning down the first sentence "I am writing this letter to demand..."
    you have the same word at the end of the letter anyway, but at least you have made your case that point so have a chance of the reader considering it seriously.

    Also, instead of just making your points, I would reccomend rephasing some of them into questions, so that you give them something to consider and respond to.

    I would also suggest that you ask them what they can do to address your concerns, with halting the study being just one option. Maybe they could ensure the right people are re-included or something like that. If you demand they halt it, then it comes across a little unreasonable and its easy for them to deny.

    I dont know alot about this situation, and i agree that it would better if those who made the original 'finding' were included. However there may be several reasons why thats no longer the case. 1. Ruscetti and/or Mits may have distanced themselves from it (perhaps they dont now expect to find anything - just a possibility) 2. Mits hasnt got a lab now that she left WPI has she? 3. Lipkin or someone else might have excluded them to ensure that the answer is taken seriously in light of how Mits is now seen my many following her sacking. 4. some other valid reason...I suggest asking WHY they arent included now, because there may be good reason.

    Personally i think the study absolutely does need to happen to put a lid on the issue for good (or not) depending on how the tests go. Lipkin is the best guy for the job and put togehter a well planned study as far as i can tell, so it will have credit to it.

    Also, from what i read on another post Lipkin and others are doing a deep search for the cause of ME/CFS no matter what that might be, so the guy appears to be on our side, and determined to find it - XMRV or not. I dont know if that is as an extension of this study, or seperate though...Id be interested to know if someone has the answer.
  4. taniaaust1

    taniaaust1 Senior Member

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    I believe Lipkin is one of the good guys and wont be doing anything insultive there. I do think he genuinely wishes to help us.

    no wonder not many scientists wish to get into studying ME/CFS. Is there any other illnesses in which scientists who wish to generally help, get so harrassed by those they wish to really help? I wish our scientists could be more encouraged. It must feel so insultive to them to be being told by patients, you are doing this or that wrong.

    Unfortunately involving Mits (another who I see as geniunely wanting to help us) would probably cause many disputes and not an accepted outcome, whatever that is.

    To all the good scientists out there trying to help us (rather then just trying to protect their reputations), I'd like to say a big Thank You. Some of us really appreciate you . (To Mits, Lipkin and others seeking to find real causes of our illness).....
  5. alex3619

    alex3619 Senior Member

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    On funding my best guess is if we stop the Lipkin study, we lose the money. It wont be reallocated, or at least I doubt it will. Secondly, Lombardi is still involved. He should be just as lab competent as Mikovits or Ruscetti by now with respect to HGRVs, and other staff might be up to speed also, I don't have profiles of all their lab people. He has had a good number of years to learn. If the Lipkin study is stopped, the message will be received by most that HGRVs do not exist, even though the evidence is not there to confirm that. We need the Lipkin study, and it should not be forgotten that it looks like Mikovits and Ruscetti both approved of it. In any case has anyone confirmed that Ruscetti will not be involved?

    So if the Lipkin study could have found something, we will miss out on that follow-up research. If they cannot find HGRVs reliably then research will slow down or halt - but that is what we will get if Lipkin does not do this in my opinion. Case closed, XMRV gone, no funding. So this is a necessary study from that aspect as well.

    About the only downside is some resources of WPI are being tied up. However if you think that the WPI cant find it, why worry about that? They will spend more money on HGRVs anyway, I doubt it will affect budgets on other research at WPI, although only the WPI can say that for certain.

    The BWG was not designed to confirm or refute HGRVs, just the practicality of mass testing for them in blood. We need the Lipkin study unless there is a compelling reason otherwise. The reasons given so far are not compelling. If WPI can find HGRVs reliably and the other labs can't then we will have evidence that the other labs indeed cannot find the virus. In fact I think one of the reasons that WPI might have had trouble in the BWG is that they were using optimization protocols to HGRVs that had not been calibrated on the new methods, but the other labs were optimized differently. It remains to be seen if the WPI can indeed find HGRVs in patients and controls at all - the claim is out there, it needs to be tested. The Lipkin study will give us data to estimate the probability that WPI is right or wrong, not the guesstimations we have now. This is the only study to date that will give us that kind of data.

    Finally, I doubt any letter or petition will sway anyone, unless it is used to confirm that patients dont want the study and all of the HGRV research should be shut down. That is how I see it will be spun, or at least some will attempt to do that.

    Bye, Alex
    Tony, Lily, Battery Muncher and 4 others like this.
  6. taniaaust1

    taniaaust1 Senior Member

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    Thanks alex.. you put a lot of my fears in your post which I couldnt express at all. I believe we would loose the study and the money and it wont look good.. it may discourage future funding of studies for us. Could have a ton of negative impacts stopping this study instead of supporting it.
  7. Marg

    Marg Senior Member

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    Thanks Alex for yor post. You are right on as usual!
  8. ixchelkali

    ixchelkali Senior Member

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    I hadn't heard this. Can you tell us the source of this information (preferably with a link)? Thank you.
    Tristen likes this.
  9. Kina

    Kina Moderation Team Lead

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    Who wrote this letter?
    Tristen, justy and anne_likes_red like this.
  10. dannybex

    dannybex Senior Member

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    I'd be curious about that as well. IMHO this is a disasterous idea, will turn off more researchers/scientists than ever -- if that's possible after what's been done. Seriously, why not write a letter saying 'we demand all research into ME be stopped unless Judy Mikovits is in charge of everything'?

    Sheesh.
  11. dannybex

    dannybex Senior Member

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    I agree...didn't see this until I posted, but very well said.
    Tristen and Battery Muncher like this.
  12. markmc20001

    markmc20001 Guest

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    Thanks Jace. I think there are many good points in the letter and somebody should officially go on record with those points to whoever might listen.

    I will give it a couple days to see if the letter gets revised, and will send it off.

    Thanks!
  13. Kina

    Kina Moderation Team Lead

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    Well I have my answer who wrote this post and copied/pasted her by Jace. No shock at who originated this. I think if people have questions regarding a study it would be more appropriate to ask questions rather than demand the study be halted. Anybody could write a letter demanding a study be halted for whatever reasons they see fit but that doesn't mean a study will be stopped. I believe that Lipkin is going to be looking for a whole array of pathogens. What if he finds something very important, if his study is halted, then answers could well be missed. I really believe from the bottom of my heart that the letter is not the right approach to take. Maybe Lipkin would be open to answering some of the concerns.

    Demanding a study be stopped stops the scientific process.

    Maybe I haven't been paying attention but where has Lipkin published what assays he will be using. Could somebody point me to a statement by Lipkin that details this. Has he stated that he will only be using certain assays over others. Kina.
    Lily and Jenny like this.
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Kina, Lipkin has two studies. One is on HGRV and is funded by NIH. The other is on all possible pathogens. I think the second one involves CFI.

    Tina
    justinreilly likes this.
  15. Tony Mach

    Tony Mach Show me the evidence.

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    Yes, full ack.

    And we need to stop wasting energy on things that are not the cause of our illness, and focus on research into other possible causes gamma retro-viruses are not the only viruses. We have some "old" immunologist that need out support (Nancy Klimas comes to my mind), over the last decade some "new" researchers came into ME/CFS (The Norwegains, The Lights, John Chia) who brought new ideas they all need our support.

    XMRV made our illness "interesting" and brought some people (Lipkin wouldn't be doing research into CFS, without the Science paper), we need to get more people with different views into our field and support those with expertise of our illness already working for us.

    But running after XMRV is a lost cause, I'm afraid. Trying to stop studies that you think are stupid is only going to drain your energy.
    Battery Muncher and Jenny like this.
  16. jace

    jace Off the fence

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    Obviously, no one is forcing anyone to do anything. We all have freedom of action here. If you do think this is a worthwhile shot across the bows, as I do, then rewording or using your own letter is a better thing to do than just copying and pasting. We all have our own opinions on this, and just about any other matter.

    I did not just cut and paste, but added some of my own stuff. Every advocacy initiative comes from an original source, and then is spread by others.

    Lipkin was touted as being famously a de-discoverer. While I have no arguments with other lines of research, this Lipkin study has been characterised as the "last word" on HGRV's in ME, despite that they will be looking for (it seems from what we know) only the artificial VP-62, using assays aligned to that clone, as has been the case by the participating labs so far.

    The concept of a Last Word study, only two years in to this latest round of research into retroviruses in ME, should be examined carefully. Some will say it should be rejected and I am one. I don't see how any single study, at this point, can have the power to say yea or nay when most hypotheses take a range of different tests, including clinical trials and several more years, to prove or disprove.

    I am not so gullible to believe we can 'demand' anything, and actually get it. We are not in a position to make the decisions about research being done or not, or to lay down the law as to how it is carried out. But our concerns might alter things a little, and just letting them know that we are concerned, and why, is worthwhile IMHO.

    I'm no Moses. These things are not written in stone.
  17. Kina

    Kina Moderation Team Lead

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    I had a very short conversation via email with Dr Lipkin last night. He now has read the letter posted by Jace who will not divulge the source of this letter even though it was easy to guess. Dr Lipkin made some extremely good and logical points about the study, who is participating, the assays etc.. I will not post the emails here as I don't have permission to repost and often the words of researchers like Lipkin get so massively twisted that the meaning gets lost.

    I asked my questions, they were answered.
  18. jace

    jace Off the fence

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    Gosh Kina, how lucky you are to have a direct line. Your post is not very helpful to anyone here, though.

    Nobody asked me to. I got it from mecfsforums, a member called Pumpkin. Don't know where s/he got it from.

    I find if you cut a short section of text from a document and paste it into Google, your quarry comes up near the top. This works for scientific papers too, it's quicker generally than going via PubMed.

    Why can we not have transparency and clarity over this study design? Why can we not voice our concerns? Why should that be a problem to anyone?
    Angela Kennedy likes this.
  19. Daffodil

    Daffodil Senior Member

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    I share Jace's concerns. I no longer trust anyone to have our best interests at heart, unless they are patients themselves.
    Angela Kennedy likes this.
  20. markmc20001

    markmc20001 Guest

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    OK


    :balloons:

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