1. Patients launch a $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!
9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
Discuss the article on the Forums.

ESME are making an announcement next week? No idea what it is.

Discussion in 'General ME/CFS News' started by V99, Mar 23, 2010.

  1. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
  2. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    interesting...
  3. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Pure speculation: Maybe something to do with this statement, within their statement of praise and cooperation with WPI? "We would like to invite a representative of the WPI to be a guest speaker at future European conferences to help us inform and train European MD’s and therapists better."

    From the website: June 13 meeting of Think Tank for ME
    Experts Launch Think Tank for Mystery Disease

    Ten leading scientists in Europe have formed a Think Tank for ME and will hold their first meeting on the 13th of June. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.
  4. michal

    michal

    Messages:
    23
    Likes:
    0
    I now comunicated for some days with ESME - we were just talking that we could try to do a petition to support their activities. They wrote me a bit about their plans:
    "ESME wants to do the XMRV test in a respected lab with blood samples from 5 or more different countries in Europe.
    We are planning to write a professional project proposal very soon."
  5. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    4
    Great! Let's test this XMRV hypothesis and then run with it or get on to the next possibility!

    I love it that ESME has stated upfront that more biomedical research is needed.

    Welcome to the Forums, Michal, and best of luck to you with your petition to support ESME.
  6. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Fingers crossed

    I've definitely got my fingers crossed on this one. On the bright side, ESME has been explicit in congratulating
    "the Whittemore Peterson Institute on the groundbreaking work they are performing in the area of neuro-immune diseases and especially their work with the XMRV virus. We applaud the thoroughness of your research and the openness with which you are sharing this research information with the world. We believe that by sharing scientific knowledge with this openness, you are starting a new era of scientific cooperation."
    http://esme-eu.com/home/esme-news-xmrv-breakthrough-information-flow-in-europe-article173-6.html
    Hopefully however, ESME will be more rigorous and forthcoming than Dr Kerr, one of their honorary members, was in the failed Groome study. Specifically more rigorous in two areas:

    1. Cohort selection. PUHLEEZ - will they use Canadian/Fukuda criteria patients with reproducible immune abnormalities, cognitive deficits, deficiencies in V02, etc. etc.
    2. Lab methodology. We've been over this over and over again - when will someone GET it right?!
    If Kerr couldn't get it right, and he's now an honorary member @ ESME- will this help the cause of XMRV research or hinder it? It has to be said. After all, Kerr DOES know the difference between Canadian and non-Canadian criteria, reproducible immune abnormalities etc - doesn't he? Kerr is something of a sacred cow, but his recent track record has got my spidey senses activated.

    SO... cheers to ESME, with a conditional, "I hope they get it right". Give us rigorous enough science, following the Singh's, Silvermans, Mikovits' etc. of the XMRV research world. USE the reagents etc. offered by Silverman, WPI etc - so whether you do or don't find XMRV, we know you know what you're doing. Both in selecting patients, and in the lab - and that you really did your best.

    So much depends on cutting through the smoke and mirrors of the UK and EU research so far, so I'm hopeful that ESME will "get it". Go ESME, GO!
  7. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Seems claims WPI is not sharing is not true. They are evidently sharing with the ones they want to share with.

    Tina
  8. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    :Retro wink:Right on, Tina! Or they're sharing with the guys who ask for the reagents etc. That's the scoop I'd heard about one of these so-called failure studies. They didn't even ASK for guidance or reagents?
  9. Koan

    Koan Be the change.

    Messages:
    2,597
    Likes:
    53
    Thanks you so much for this V99!

    I detect a sea change.
  10. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,847
    Sofa, UK
    Hi Tina. I keep having the same recurring thought about this issue, so time now to post on that thought.

    There clearly are some key issues of methodological detail, and enough has been said about those discrepancies between what the Science paper said and the subsequent 'clarifications' (?) on the need for multiple samples drawn at different times, and the need to culture the samples. The bottom line of all this seems to be that the Science paper is somewhat economical in revealing what detailed steps are necessary to find XMRV in CFS patients.

    How to explain this apparent lack of key detailed information? Options I can see:

    1. The Science editorial team made them remove a load of detail they wanted to include (there was a comment early on to this effect).

    2. As a relatively small player, and as a new institute with limited funds, they have occasionally been a bit patchy with publicly-released info, and their media work has been a bit weak.

    3. They had no real reason to believe or assume that certain details of their methodology were essential to successful detection: they just implemented what they considered to be the best practice with best hope of finding XMRV, but had no way to know which measures they took were necessary and which weren't.

    4. They are playing an absolute blinder and they think the way I do.

    I think the overwhelming probability is for elements of all of the first 3 to be true, although point 3 does have a weakness as a theory: they must have done other unpublished testing as well so they are fairly likely to know full well that XMRV is hard to find, so it's my pet theory number 4 that I keep coming back to...

    Think back to Wessely's immediate statement on the Science publication. He came straight out in the press and said he didn't think the finding would be replicated in the UK. More should have been made of that quote when the IC study was published btw, we should have pointed out more clearly that SW at least had made his mind up before the IC study began, and we should perhaps have played closer attention to his suggestively careful choice of words along the lines "I don't think this finding will be replicated in the UK" - a safe prediction to make if you know you are able to make it come true...

    And note also that it is entirely predictable that he would take this line. Also entirely predictable that he would jump in with a debunking replication study as quick as possible, and entirely predictable that his study wouldn't exactly turn over every rock he could find in an enthusiastic attempt to find the virus...

    So: entirely predictable that the first response to the WPI research would be exactly what DeFreitas got: a series of studies from experts in failing to find things, followed by a bullish set of public comments from all our enemies (remember, the WPI team have been in the business, and on our side, long enough to see these people as enemies) stating that the whole thing was a mistake, there's no XMRV in CFS.

    Now: If it turns out that other labs do confirm the correlation, and that XMRV is the key root cause of CFS, what do our enemies look like now? What kind of a corner have they just painted themselves into? What light would that cast on their previous studies that have failed to find anything?

    Against this background, if you were Judy Mikovits and you picked up the phone and there was Simon Wessely asking for some tips on how best to detect XMRV, what would you do? Would you invite him over for a cup of tea and a chat? (If so, what sort of tea would you offer? :D). If you were anything like me, you might just want to pause for a moment and consider how much you wanted to help this guy. If you were anything like me, you would have already thought very carefully about who you were going to share with, because you are in a once-in-a-lifetime opportunity to call the shots, and there are more than enough scores to be settled here, and this is your one big chance to determine the script. And your Wesselys are now utterly predictable, because you know exactly what they will think and how they will react, their prejudices will determine their behaviour, and you have the opportunity to expose them for what they are.

    So: that's how I'd do it, anyway, but perhaps that's just the way I think. Whether my twisted conspiracy theory is right or not, if XMRV does turn out to be the cause of most CFS, this is the way it will have played out.

    The WPI warned us from an early stage to expect a rollercoaster ride and some negative studies before the positive ones. So they did tell us that was all coming, they knew it was coming. I'd just love to believe that they way things are playing out is just the way they thought it would. They've been pushing on with XMRV research while the world struggles to catch up, and personally I don't begrudge them that extra year or so's head start: they have thoroughly earned it, and I'd gladly stick it out for another year if that bought me Wessely's head on a stick.
  11. parvofighter

    parvofighter Senior Member

    Messages:
    436
    Likes:
    99
    Canada
    Hi Mark,

    Good precis of the replication info in Science
    I really like the way you laid out especially items 1-2 in discussing whether the Science paper should have revealed more.
    What was the purpose of the Science paper?
    There's also the issue of what type of paper the Science paper was. As I understood it, Science was interested in this paper simply because WPI et al proved the existence of an infectious retrovirus. Prior scientists in prostate cancer had found fragments of XMRV- but never the whole virus - much less proof of infectiousness, or electron micrographs of budding virus. What underscores this focus on XMRV, not XMRV-in-CFS is that the Science editors tried to get WPI to remove mention of ME/CFS. And the WPI refused. If Science had gotten its way, there might have been ZERO mention of the methodology that WPI fought for. In my eyes, it is entirely consistent that Science would just require the information to prove the case they were after in the first place: the existence of a new infectious retrovirus. In other words, maybe the Wesseleyites should be thanking the WPI for the info in the Science paper - not whining about the information which they chose to ignore.

    Where the WPI was explicit
    However item 3 misses the mark somewhat inasmuch as the WPI were VERY explicit about exactly which types of patients to select - and the replication "attempts" didn't even use the available information. Is that the behavior of scientists who really WANT to replicate the study? The cohort issue is even more damning in my eyes. In retrospect, and considering the BMJ paper, we know now that several of the authors knew full well that the cohort had been screened for patients with "delayed convalescence of a viral infection". After all, they wrote the source study from whence their 20-year old blood samples came.
    That the Brits and Dutch didn't bother to use the available critical information on cohorts is a big honking red flag for their intentions. And it does rather seem to render complaint about the WPI "not sharing" seem trite.

    That said, when the WPI revealed that they had to look several times, in multiple samples, my head certainly came up, and researchers had every right to be asking questions. As I commented in earlier threads, I took umbrage with Dr Vernon not because she demanded more information from WPI, but because she didn't do so evenly across the other (much more deserving) failed studies.

    More stuff on WPI's motivations
    I think, however, that we can dispense with the final point you made - and the speculation around it:
    It might be helpful to check back at whether in fact these replication attempts ASKED for reagents etc.:
    From: http://www.facebook.com/notes/whitt...-wpi-response-to-second-uk-study/311221958025
    The authors of the two UK studies did not attempt to replicate the WPI study. Replication requires that the same technologies be employed. The WPI sent reagents and information to several groups of researchers in an effort to support their replication studies. Neither UK study requested positive control blood,
    plasma or nucleic acids from the WPI.

    Consider the context Mark: 3 failed replication studies - none of which even bothered to use the freely-available information on cohort and lab methodology from the Science paper and its Supplements. They didn't use the information they had. But they're complaining that they didn't have more. So which is a more reasonable likelihood: That Wesseley et al were turned away, as you suggest, by the WPI (remember, the Wesseleyites didn't have to go to the WPI. Instead, they could have approached Dr Silverman at the Cleveland Clinic - he was sending the virus and reagents all over too). Or that they went their own merry way and did their own thing... but encouraged others to insinuate that the WPI had been unprofessional and spurned them.

    Honestly, salacious conjecture about the WPI is getting tiresome. Let's put it to bed, and get on with ESME's forthcoming announcement. Any inside scoop?:Retro smile:
  12. Mark

    Mark Acting CEO

    Messages:
    4,465
    Likes:
    1,847
    Sofa, UK
    Sorry Parvofighter, you're absolutely right of course that the key points as far as the failed studies are concerned are that they didn't ask for guidance from the WPI or Cleveland Clinic, and that they didn't even follow those aspects of the methodology or patient selection that were clearly laid out. It's also a crucial point that against that background any questions about further methodological details that the WPI supposedly should have revealed become pretty irrelevant. And I also agree that the extra details that have recently become controversial are almost certainly details that the Science team weren't interested in publishing, and likely removed from the paper themselves during the review process.

    Your analysis is superb, and I stand corrected, although I still feel there is something in my point 3: it seems totally unfair to expect the WPI to not only specify how they found what they found but also to know every specific detail of what they did that is necessary for successful XMRV detection. Maybe something they did in the blood collection process was significant for reasons even they didn't know, could they therefore be criticised for failing to mention an apparently trivial detail that turned out to be crucial? I think it's a fair point in their defence, it's just that, as you point out, in the context of the recent controversy that point doesn't even need to come into play.

    I suppose I should have taken a bit more time over that last post of mine. I should have made it clearer that I don't think there's any evidence that the WPI really are being economical with the truth, or that they are failing to collaborate with other researchers. I think it's clear that's not the case, and I'm feeling a little guilty now that my nastier thoughts in point 4 are unworthy of the WPI. I might personally like them to play the game that way, but I don't really believe they did. I wasn't aware there had been any suggestion that the WPI had been unhelpful to the Wesselyites; if I'd realised that was an issue I don't think I'd have gone there.

    What I really intended to point towards in my speculation was that, even though this bear-trap for the Wesselyites wasn't a deliberate plan, that may be the way it's working out in practice, and I enjoy thinking of it that way.

    I'm also sorry for wandering off-topic as far as ESME's impending announcement is concerned. No I don't have any scoop on this, other than to say what Michal posted sounds like an indication that they're about to announce a European XMRV study.
  13. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    49
    I think the news about Prof Martin Pall's European Tour may be the news. I posted it as a separate link so people will see it.

See more popular forum discussions.

Share This Page