TWiV 151: Dear TWiVers

October 2, 2011

viral mailHosts: Vincent Racaniello, Alan Dove, and Rich Condit

Vincent, Alan, and Rich review questions and comments from TWiV listeners.

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17 comments on “TWiV 151: Dear TWiVers

  1. Sorry Professor, but patients know that the WPI and NCI discovered HGRVs.  XMRV was the wrong name, although of the human gammaretroviruses they discovered some will have a xenotropic host range.   

    As all the negative papers, including the blood group, used assays that had only been shown capable of detecting VP62, which does not exist in nature, and not theses viruses, everything is explained.  The WPI and NCI assays of course do not count in this instance as there was no Trizol used with the PBMCs and culture times that those assays do require was not given by the blood group.  After all they were trying to protect the blood supply with a fast high throughput assay, not a reliable test for positives that takes times and it seems Trizol.  The CFIDS Ass have less than 1% of patients as members in the US, so they cannot claim to represent patients on any scale and even now have claimed they are switching to research, but how can they when the definitions they use for the disease don’t require any symptoms, signs, or more importantly objective measures.   Most experienced ME scientists would also say this disease is not complicated at all.  The WPI and NCI/Ruscetii are however making incredible steps forward, as their research has been confirmed by Lo et al. and Hanson.   It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human gammaretroviruses the WPI and NCI discovered?  However, this really puts Lipkin is a new light, as if he is doing his own research he now has a conflict of interest regarding the multi lab study.  Really he should not be heading that up with this conflict and the Chronic fatigue initiative conflict of interest.  

    • Your comments should be deleted because they don’t contain a shred of truth. Your query “It is interesting that you mention Lipkin is now doing deep sequencing for XMRV, will that include the human ammaretroviruses the WPI and NCI discovered?” reveals that you don’t understand the basis of deep sequencing. However I’m leaving the comment here so that others can see the misinformation that pervades discussion of CFS.

      • Lance Oct 9, 2011

        Not to mention the statement “a reliable test for positives that takes times and it seems Trizol” implying that viral culture could be done from a TRIzol preserved sample –  clearly showing no knowledge of the  technique. Anyone who has handled TRIzol knows you’ll never isolate replicating virus from it.

        • Martin Oct 16, 2011

          You think implying, but never once stated.

          Failure to use trizol will have defeated the WPIs assays.The blood group did let everyone know that not all the labs were given the controls to screen, and none had their PBMCs screened.  So we have to now ignore the control results and focus on only the positives.  If not, the study should be retracted for failing.

          • Lance Nov 15, 2011

            All the subjects had samples sent to all the labs. The PBMC/trizol is slightly confusing – trizol is for extracting RNA and in PBMC you’re looking for integrated provirus – i.e. DNA. Given the original WPI work included viral culture they can’t possibly have used trizol which is pretty much neat phenol – it kills/inactivates everything immediately. You can only extract nucleic acid and (denatured) protein.

            It doesn’t make sense to focus only on positives and ignore the controls – that’s not scientific. Also the positive from WPI are not consistent – even when they found XMRV in the BWG study they sometimes had inconsistent results in replicate samples from the same individual taken at the same time – which means their assays don’t work, and therefore all their findings are false.

      • Martin Oct 16, 2011

        You will find that is a humorous comments on what one wishes to see rather than a scientific statement.  I’m not at all amazed that you failed to spot it.  

        Do you agree that Coffin should never have attempted to claim VP62 was XMRV?  Especially as that has never once been found in nature?  

        And how can you justify claims that Lombardi and Lo have different findings when both detected polytropic gag sequences?

        • Sueintoronto5 Nov 7, 2011

          can someone help me out? is this lipkin/hornig deep sequencing study going to include studying xmrv? or is that another lipkin study? there is a lipkin study where the results are supposed to be out by end of 2011/early 2012. is that one still on? is that xmrv?? God my brain is so swollen right now

  2. Thanks for mentioning BioCurious and GarageBio on this week’s episode. You rock!

    – Eri

  3. Justin Reilly, esq. Oct 11, 2011

    I can’t believe you have a permanent link to the ERV blog as a “useful resource” on!  You may know that she curses out and insults patients and scientists on her blog.  For example, she has called Dr. M “a gigantic f***ing c**t” (without the censoring stars) and a very disabled patient “the oh-so-fatigued” Andrea Whittemore.

  4. Justin Reilly, esq. Oct 11, 2011

    Prof. R.,
    Thank you for your efforts to help pwME!  This admirable commitment is embodied in your serving on the CFIDS Association of America’s scientific advisory committee.

    Please do be aware that from the best evidence we have, the CFIDS Association of America does not represent the vast majority of pwME.  There are numerous blogposts on this subject from advocates; also the longest thread ever on Phoenix Rising with 1700+ posts is on the failings of CAA.

    The “Association” does not have any members, only donors.  There is no accountability for all of the missteps that CAA makes since the Board of Directors is self-perpetuating (the board, and only the board, votes on who becomes a board member).

    There are two on-line polls in the two major ME patient fora: 
    -The Phoenix Rising poll has 88% of patients indicating they think CAA needs a change of direction and leadership; another 3% say CAA needs to change direction.

    – The mecfsforums poll has 44% agreeing that CAA needs to change direction and leadership; 51% think that “CAA needs to disappear from the planet (or more extreme and violent desires)” with the remaining 5% thinking that “CAA is doing great”,5817.msg66653.html#msg66653

    24 “User ratings” on average 2 out of 5 stars gives CAA 2 stars out of four for financials, partly because of the high salaries of the CEO Kim McCleary: $157K, 10% of CAA annual revenue, Suzanne Vernon and their accountant.

    One problem, of many, is that Suzanne Vernon coauthored the CDC’s patently fraudulent Reeves CFS Criteria.  (she says in a page on the CAA website that she now favors that it be dropped, but has done nothing else to counter this fake definition, which CDC uses in XMRV and other ME studies).

    Unfortunately, there aren’t a lot of great options for someone who, like yourself, generously volunteers to advise on science of ME.  CFI (other than the stupifying name) seems to be pursuing good research, certainly Montoya’s Stanford CFI efforts as well as Lipkin’s; also I of course am a fan of Judy Mikovits and WPI.  Perhaps you could advise these much better efforts instead.

    If you do stay on with CAA, pls suggest that they support Judy Mikovits, and most importantly that they use the International ME definition and Canadian Consensus Criteria for ME, instead of, or in addition to Fukuda.

    I also suggest studies that would have important impacts like a study to document the extremely strong association between ME and non-hodgkin lymphoma; also the DeFreitas retrovirus really needs to be looked at again.

    Thank you for your consideration.

    Justin Reilly

  5. mecfspatient Oct 11, 2011

    The only thing the CFIDS Association of America cares about is itself and maintaining its employees’ high salaries.

  6. Guest Oct 11, 2011

    You’re playing with semantics. You do know that it wasn’t until the samples arrived at the Cleveland Clinic for sequencing that they became contaminated, right? There is abundant evidence that patients are infected with a retrovirus. The problem is one of identity, not of existence.