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!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Article: XMRV In the Balance- A Tale of Two Conferences

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 22, 2010.

  1. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC

    I think that could explain alot of skepticism about it in some quarters from the beginning; if it works out (and no huge tissue reservoir is found) how it works may open some eyes. (It's tough being on the cutting edge!)
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    I just saw this - this paper suggests that laboratory mice can be infected with XMRV. Interestingly it also states that endogenous retroviruses can produce virus in them as well

  3. SA2

    SA2

    Messages:
    20
    Likes:
    0
    I would add several more points about contamination:

    For contamination:

    • They need to identify the contaminant reservoir that is contaminating so many different labs with the same virus. This virus has not been found in ANY mouse yet. If its not coming from humans, where does it come from?
      They need to explain why no mouse mitochondrial DNA is found.
      They need to explain how it is that only the CFS samples get mostly contaminated and not the healthy controls, even for BLIND tests.
      They need to explain why contamination happens consistently in so many different independent labs by a number of different researchers.
      They need to explain why this "contaminant" infects macaque monkeys (a primate closely related to humans) the way it does, but somehow is not infecting humans.

    Personally, I would like the researchers move beyond blood tests and start identifying the reservoirs for the virus in humans. The macaque monkeys research demonstrated the problems with using blood tests for XMRV. I think too many researchers are treating this virus like HIV and that is why they are have difficulty with it. Blood happens to be a reservoir for HIV and so its relatively easy to detect with a blood test. Blood is not a reservoir for XMRV and any set of blood tests are likely to prove false negative. In the case of the macaque monkeys even antibodies to XMRV were cleared from the blood within a few months even though the monkeys later showed signs of viral resurgence and continued infection. XMRV gets cleared from the blood fairly quickly and resides in some other tissues in the body. Research needs to quickly identify those infected tissues and develop some alternative tests that can be used to ensure there are no false negatives in identifying individuals infected with XMRV.
  4. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Great points. It'll be very interesting to see what Dr. Singh's autopsy study turns up.
  5. guest

    guest Guest

    Messages:
    320
    Likes:
    5
    Excellent article, Cort. Thank you.
  6. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    The UK appears to be pushing his agenda quite hard but the motives for it are unclear. It could be ignorance, arrogance, disingenuity or deflection. Take your pick. I read somewhere that he was McClure's mentor at one time but I have no evidence myself to support this.

    Dr Kerr has lost/will lose his job at Georges because of cut-backs, I believe. It is not a popular viewpoint but I don't rate Kerr's work that highly and was quite surprised to see him working with the WPI. In particular, his cohort selection was highly criticised as were certain collaborations with Wessely and the psychiatric contingent.

    Missed word..??
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,270
    Likes:
    5,483
    It would be sad to see him lose his job. The sort of speculative CFS research he was involved in was always high-risk and likely to lead to nothing - but it's also the sort of work that hold the best chance of dramatically developing our understanding of the illness. Having Kerr lose his job will mean even more researchers will see CFS as a career dead end.
  8. Klmrav

    Klmrav

    Messages:
    36
    Likes:
    2
    NC
    I was told by a doctor friend of mine who is friendly with Dr. Kerr, that his contract was not renewed!!!! He is going to be out of a job!!!! What a waste of talent. Hi ME/CFS gene expression work was amazing! Can anyone say blacklisted?

    The ME/CFS community will sorely miss his research and support:(
  9. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Kerr didn't lose his job because he researched ME. He lost his job because of cut backs across the board. And I am not so sure that his work was high risk. The gene expression research he was doing is fairly common in other fields (for instance, in obesity and diabetes) and, indeed, Dr Esther Crawley (prinicipal investigator of the Lightning Process trial on children) is one of a group of researchers which has submitted an application to the Medical Research Council (MRC) for a 2.5 million genome wide association study on 'chronic fatigue'. Personally, I feel that this money would be better spent on XMRV research and that this would yield faster, more cost-effetive results for understanding and treating ME but then the MRC doesn't believe that XMRV (a) exists in the UK or (b) is linked with ME.
  10. anciendaze

    anciendaze Senior Member

    Messages:
    871
    Likes:
    937
    Was it chance that losing that job meant it would be impossible for him to collaborate with Dr. Mikovits on work for which there was already an NIH grant? The grant is only useful to someone with a position and a laboratory. It looks very much as if there is an unsubtle effort in progress to isolate WPI and Mikovits, cut off funding, and even make it impossible for them to complete previously-funded research.
  11. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    I honestly believe that people are reading too much into Kerr losing his job. He was not a high profile researcher at Georges and so would have struggled to justify his position given the cuts that many have felt the brunt of, not just his department.

    I also don't see why not being at Georges would prevent Kerr working with the WPI. If he was that committed, then he could have worked with them in the US.

    There is a tendency in the ME community to assume that every action taken by the authorities is in some way meant to scupper us. Whilst this may on occasions be true, I just don't see it with Kerr. He lost his job because of cost cuts and may even have been relieved to be out of the ME spotlight. He seems like a pretty inoffensive kind of chap but not made of the stuff of Mikovits, and her mettle is the kind that is required to ride the storms we're now going through.
  12. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    I appreciate your take Fred...all is not due to trying to marginalize CFS (even if it does!). I think we all have to remember that ALL the efforts on CFS are small and really quite marginal. The NIH and CDC programs are about as small as you can get; the research arm of the WPI consists apparently of Dr. Mikovits and a few assistants...because CFS has been so marginalized all these programs are so small that they are all susceptible to cutbacks when economic circumstances change.......

    I looked at a bunch of the other disorders that get little funding at the NIH - its like they just cannot get going. Well established disorders get good increases in funding from time to time but the little marginalized disorders - they just stay stuck at the bottom or decline. Its like they have no good footing.

    Love the avatar My Holmes :cool: - Brett was my favorite Holmes- he even beat out Basil Rathbone - not an easy thing to do.
  13. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    Still losing Dr. Kerr is a blow when we have so few good researchers. The one thing he did manage to do which no one else was able to do was duplicate his gene expression results - this was the first time that any gene expression results were validated - a big deal in a field that was awash in inconsistency.

    I don't know if Dr. Mikovits will work with Kerr again even if they use the WPI's laboratory. Its a shame - the WPI has not been getting its grant proposals funded; whether its because of jealousy, payback to her for her outspokenness, prejudice or whatever, Dr. Kerr appears to know how to write good grants and get them funded. Its a shame they don't appear, at this point, to be not working together - but we shall see.
  14. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    He didn't exactly duplicate his results. The second round of tests showed slightly different sub-types to the first and, to my knowledge, there has never been a published explanation of the reasons why.

    I spent some time recutting the public domain data from Kerr's second study and did not find anything that was startlingly new or overwhelmingly conclusive in terms of a breakthrough finding. Indeed, the results from the cross regional cohorts showed dubious inconsistencies, possibly because of the widely differing sample sizes, possibly because of potential differences in cohort selection, or both.

    You could also argue that Kerr's research is downstream of aetiology. For example, if you look at the phenotypes which Dr Esther Crawley is studying in children (musculoskeletal; migraine; sore throat) you could argue that these are simply symptoms of the same aetiology and, whilst they may be useful for researching symptom treatments, they may never shine a light on the underlying cause of these symptoms and why they present so differently across patients.

    Bear in mind that none of Kerr's grants have come from the UK Medical Research Council, even though he sits on their CFS/ME Expert Group, and so his grant applications to the country's main funding institution have never been successful (if, indeed, he has ever submitted any to them). Most of his funding has come from the CFS Foundation (whose website has been unavailable for months) and ME Research UK (who, it has been suggested, struggles to get researchers to take on ME work).
  15. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    440
    Raleigh, NC
    That was very educational!

    Did he have the same genes show up? My understanding that of all the gene expression maybe only one gene or two had showed up in any two of them. I thought he had the same genes show up - which I think was a first - in that very uneven field. Even if the subtypes were slightly different that is fine with me - I was neverwhelmed with the subtyping honestly and gene expression, in general, has been disappointing, for sure.
  16. lancelot

    lancelot Senior Member

    Messages:
    324
    Likes:
    2
    southern california

    That's just sad. He was one of the best the british had in ME/CFS.
  17. LJS

    LJS Insert Witty Comment Here

    Messages:
    207
    Likes:
    7
    East Coast, USA
    Well I feel this is in part Dr. Mikovitz fault for not closely watching what she says in public. For example take this statement from the Learning to Live with CFS blog
    This could easily be true but she should never say this in public, it is just stupid. If she wants to respected in the research community, get papers published, and get grants she needs to stop spreading rumors. Don't bite the hand that feeds you, if she is right about XMRV we will all know with time, there are far to many highly respected researchers hard at work in the labs to not get to the bottom of this. Getting funding and researchers interested in CFS is in large part a image problem the illness has, discussing conspiracy theories and rumors in at a large venue is no way to help that image problem.
    like this for example:
  18. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
    I'm looking forward to next years Invest in ME conference with zero British researchers (as opposed to last years 1 - Dr Kerr). What a complete and utter embarrassment.
  19. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
    Presumably you mean LeGrice's presentation Cort?

    Fred's comments about Weiss are spot on. Very slippery character, who has almost single-handedly kept XMRV off the news agenda in the UK by nefariously linking it to the MMR vaccine & autism. The guy clearly has an agenda. One which we need to examine further and expose.

    I'm pretty sure Robin Weiss was Myra McClure's supervisor (remember reading/hearing this). Also her first publication (back in '87) has his name on (as you would expect from a supervisor).

    IMHO right now we need to worry less about Wessely & chums and more about the McClure-Weiss axis of misinformation.
  20. Sean

    Sean Senior Member

    Messages:
    1,226
    Likes:
    1,988
    While in no way downplaying or being ungrateful for what Mikovits has achieved so far (quite the contrary), I still have to agree with LJS that Mikovits could have played a smarter political game.

See more popular forum discussions.

Share This Page