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Khaly's latest: CAA-XMRV: Tell Me What It Means To ME?

Discussion in 'General ME/CFS News' started by leelaplay, Mar 2, 2010.

  1. leelaplay

    leelaplay member

    CAA-XMRV: Tell Me What It Means To ME?

    My deepest apologies to Aretha Franklin. I couldnt help it.

    Im out to give you all my money, but all Im askin In return honey, is to give me my proper respect


    The first item that appeared in my Saturday morning email was the CFIDS Associations notice of Dr. Suzanne Vernons latest blurb, Playing A Weak Hand Well.

    I had no doubt in my mind that this would be some kind of response to the latest failed XMRV pseudo-replication study, and was hoping that the rapid response by the CAA was indicative of change..in light of the recent conversations with the advocacy group as a result of Whassup With the CAA, and in light of some even more recent failed response to the DSM5 circus. (Well get to that further down in this blog.)

    It was not.

    I read the article and my brain shorted out on the spot. I dont know how Mary Schweitzer pulled off such a rapid and beautifully perfect response on her blog, but I thank Goodness that she did. I went into overload.

    In the Weak Hand article, Dr. Vernon states, With the third negative study published in just 51 days, it is now harder than ever to explain the negative results based on CFS patient characteristics and methods alone. The implication is that XMRV is likely to explain a subset of CFS rather than all cases defined as CFS (using any of the seven existing definitions).
    Harder than ever to explain? Really?

    Lets break this down.

    With the third negative study published in just 51 days.

    Stop. Right there. How have these so-called replication studies been handled so far? Does the fact that THREE of them have been completed in just 51 days ring any bells? It should. It smacks of hurried, slap-dash, agenda-driven pseudoscience.the type that occurs when we hold to the concept that science is a social effort, and not that science is, er, science.

    And lets take a look at the driving forces behind these studies, Simon Wessely in particular. The first of these three biopsychosocial nonreplication replication studies came to us straight out of Imperial College, UK, patients courtesy of Simon Wessely himself. The percent of samples found to have XMRV iszero. Not even a token XMRVer in the bunch. The methodology was questionable at best, and even the CAA admitted that this should not be considered to be a valid attempt at replication.

    That being the case, why is it included as a part of Dr. Vernons argument that it is now harder than ever to explain the negative results? How can we even count this as a negative study, if we deny its validity in the first place?

    Stephen Ralph DCR(D) retired, wrote an excellent piece describing the irrelevance of the three negative studies that seem to concern Dr. Vernon, called Exposing More Anti-XMRV Spin

    In it, he says,

    So in closing, we have now had three post-Lombardi et al studies 2 in the UK, and 1 in the Netherlands.

    * None of them bothered at all to replicate Lombardi et.al.
    * None of the three studies used Fukuda and Canadian criteria to specifically select all their patients using the detailed outline of patient selection given in the Lombardi et al paper (see above).
    * None of the three null studies validated their test against samples from CFS patients already known to be XMRV positive
    * None of these three studies even conceded that there is a growing population of CFS XMRV positive patients across the world including the United Kingdom.
    * None of these three studies made any attempt to carry out the full range of testing methods specifically used by the Lombardi et al research ie:

    a)PCR on nucleic acids from un-stimulated white blood cells;

    b)XMRV protein expression from stimulated white blood cells;

    c)Virus isolation on the LNCaP cell line; and

    d)A specific antibody response to XMRV.

    (Note: It should also be emphasized that all four methods were needed for very good reasons and not just for the sake of wasting time and money. You can find out why by reading the Lombardi et al papers cited in this article.)

    The implication is that XMRV is likely to explain a subset of CFS rather than all cases defined as CFS (using any of the seven existing definitions).

    Why is there no discussion here about the seven existing definitions? Surely this is CFS history 101. What about Oxford? Do we find it reasonable in ANY scenario for XMRV replication attempts to be based on OXFORD? Why is there no reiteration of the inherent flaws in Oxford, and how it came to beas a direct response AGAINST the biology of the disease, driven by the psychologizing movement. Why, in this statement alone, is the CAA once again expediently reclassifying the very cohort that earned us the CFS brandas a subset? Why does the CAA NOT defend Holmes and instead follow the political trail to psychology by not doing so?

    Mary Schweitzers blog does an excellent job of addressing the Oxford Criteria question. PLEASE read it if you havent already!

    There are so many flaws, faux pas, and political red flags in this one paragraph alone that I almost didnt read the rest of the article.

    But I did.

    Lets talk about the WPI samples.

    Further in her paper, Dr. Vernon argues that the study by Lombardi, et al, published in Science showed that XMRV could be detected in samples from the WPI repository. Unlike the negative XMRV studies where results and characteristics of these CFS cohorts have been the subject of numerous earlier publications, little is known about the patient samples stored in this repository. The Science papers supplement refers to a variety of abnormalaties without defining how they were measured or how uniformly they show up among patients whose samples are stored there. The supplement makes reference to DeFrietas PNAS publication. Does this mean that WPI tested the same samples as DeFrietas, et al, or that they were obtained from the same cluster outbreaks mentioned in her paper? We do not know.

    This seems like idle speculation. In another, earlier paper written by Dr. Vernon, she states that samples from the CFS patients in the Science paper were gathered from several regional physicians practices, according to information on the Whittemore Peterson Institutes website. http://www.cfids.org/xmrv/021510study.asp.

    Other than the inferences about the sample selection, lets not forget that the original study was done in conjunction. The three major players were the WPI, AND the Cleveland Clinics, AND the NCI. This was not a fluke, nor a fly-by-night 51-day wonder.

    I stand confused.

    More on DSM5, as promised.

    Why, WHY, is the CAA so quick to jump on anything that seems to denote a negative connotation for WPI, when it comes to anything XMRV? Especially when issues that are genuinely threatening to the CFS community take a back seat?

    Two weeks ago, on Facebook, we asked the CFIDS Association what their position was regarding the DSM5 drafts, under their discussion topic, Questions for the CAA.

    (See DSM-5: Ticket Back to Reevesville for more information on DSM5)

    Several of us were asking questions. Here are the questions, and the responses we got:

    Question: What is the CAA doing to combat the DSM5 drafts?

    The CFIDS Association of Americas response: Have you inquired with the IACFS/ME? Their organization is led by a psychologist (Fred Friedberg) and has the professional expertise to navigate DSM criteria and the APA process for revising/adopting it.

    Question: The point wasnt what anybody else was doing, though., it is what are YOU doing, CAA? This is a key, critical , end-of-the-rope advocacy issue. Supporting the science and combatting the psychobabble is what our advocacy group should be doing, first and foremost. If there is a more Custers-Last Stand-type scenario that is going on at the moment, diverting our advocacy groups attention, Id like to know what it is.

    The CFIDS Association of Americas response: Understanding and influencing proposed new DSM disorders and their consequences for ICD coding and clinical care require consultation with professionals who have expertise in the processes employed by the American Psychological Association and World Health Organization. Were aware of the issues, but cant provide an immediate and definitive answer about how to effectively intervene. Validation of biomarkers for CFS would substantially reduce the impact of the CSSD proposal and validating CFS biomarkers is our top priority.

    Question: CAA, will you not hold up the Holmes 88 criteria and SHOW the authors of the DSM the part where it says psychiatric disease is excluded under the Major Exclusion portion of the criteria? http://www.cfids-me.org/holmes1988.html What possible reason is there to be anything less than adamant on insisting upon the intended meaning of this Major Exclusion?

    Question: I understand that you have Katrina Berne, Ph.D, (Psychologist) on your Board. Couldnt she take a look at the DSM5 proposals and tear apart their intent? She has been a PWC for years, so I feel she must be very interested in this continuing debacle at the CDC.

    The CFIDS Association of Americas response: The DSM changes were posted last week and the public comment period is open through April 20. Rather than act hastily, we need to undertand all the factors involved with these proposals and how to most effectively influence the final decisions. We have a tradition of being deliberate and thorough in our actions that we intend to uphold.

    The CFIDS Association of Americas response: We were working over the weekend on this and other issues, but administrative access to our Facebook account was blocked by Facebook for site mainenance for several hours on Saturday and Sunday, preventing us from making any posts.

    Question: If the mission statement is to promote awareness, wouldnt that include issues of great concern to CFS patients. While acting with deliberation and without undue haste is laudable, shouldnt the CAA at least be making CFSers aware that the DSM revision process is occurring, and that CFSers would do well to scrutinize it?

    Question: Secondary to that, how about a statement of concern regarding Sharpe and company being on the panel?

    The CFIDS Association of Americas response:

    No further response.

    (It needs to be pointed out that the CAA never bothered to actually visit the questions thread long enough to post answers. These questions had to be asked again and again on different threads, and then when answers were received elsewhere, posted by us into the q&a.)


    So in answer to the very appropriate Holmes 88 criteria questions, and all other criteria questions, it appears that we will get no answer from the CAA. It does not appear that they will hold up the original Holmes in our defense, whether it be against psychobabble, or in response to improper replication testing of a potential biomarker.

    Im reminded of my last visit to Kentucky Fried Chicken, over 10 years ago. I asked for all white meat. They said it couldnt be done, as theyd haveta COOK that!

    I eat at Popeyes now.
  2. oerganix

    oerganix Senior Member

    Thank you, islandfinn. That about sums up my reaction to Vernon's response. Sounds like a Reeves sidekick talking, all over again. I understand the CYA-type of response, as they are historically very conservative and cautious about getting into any controversy, but why come off so antipathetic to WPI without being equally hard on the 3 previous "studies"? This, from our supposed advocate, really just helps muddy the waters according to the Wessely-ites' script. Many well informed writers have not found it at all hard to explain these 3 quick and dirty studies and to grasp just why they were so quick and so dirty. Why has she found it so hard? Where's the advocacy?
  3. Esther12

    Esther12 Senior Member

    I don't know much about the CFIDS, but I've been impressed with the way they've responded to all the XMRV stuff. I don't think anyone knows for sure what's going on with XMRV and CFS, but I think it's good the CFIDS is pushing the WPI as well as other researchers. I think it's difficult for an advocacy group to take part in an ongoing scientific matter in this way, but given that, I think they've done well.
  4. Gerwyn

    Gerwyn Guest

    I am worried about vernon too.I pointed out the same flaws in the three studies why is she not pointing them out.They are pretty obvious to someone even with a half untrained eye like me.I feel that there is a case of double standards here How do I access the blog
  5. cfs since 1998

    cfs since 1998

    Am I the only one who thinks these two sentences by Dr. Vernon are incongruous with each other? She says the results can't be explained by patient characteristics or methods, then said they could be explained by subsets, but subsets are just groupings of patient characteristics. It is a contradiction; a logical fallacy.
  6. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
  7. starryeyes

    starryeyes Senior Member

    Bay Area, California
    The more I learn about the CAA and where it stands the more disillusioned I become with them. I thought that they were really going to try to help us at this critical juncture but now I think that they are actually either clueless or not acting on our behalf because they actually want CFS to be given a more psychiatric illness diagnosis by the DSM. I don't trust them.
  8. hensue

    hensue Senior Member

    I do not ask this question to be Rude but why does Cort constantly defend the CAA and especially Dr Vernon?? Is there some reason? I dont trust CAA at all! Even to my untrained eye.
  9. bakercape

    bakercape Senior Member

    Cape Cod. Mass
    I think

    Once again we are seeing a researchers previously assumed concept of CFS create there opinion on XMRV.

    From what I have read Dr. Vernon strongly believes CFS is a heterogeneous illness. Before XMRV she believed this and now it is hard for her to see past her previous beliefs. Its is much easier to go back to her preconceived notions than remain open minded to the possibility that many cases of CFS are cause by one virus.

    As for the CAA they continue to show why there membership has steadily declined over the years.
  10. Hope123

    Hope123 Senior Member

    Look, I give to the CAA but their actions or inactions leave me quite by the wayside.

    At this juncture in time, if the CAA has nothing positive or definitive to say about XMRV, why couldn't they take just a "wait and see" attitude rather than commenting negatively on the studies? I like that they are adding XMRV to their current studies and this perhaps was the best response to any patient pressure. But they should not buckle into patient or external pressure by issuing a statement like this.

    The more I learn about CFS research, the more I am disillusioned by the CAA's poor efforts at emphasizing the chronic nature of this disease, the poor recovery rate, the numbers of young folks affected by this illness, the fact that many people come down with this after a flu-like illness, etc. As well as the ignorance of the multitude of past findings by other researchers: for example, why doesn't the CAA advocate for more funding towards natural killer cell function reearch, one of the few markers consistently showing up in several studies to be a problem in CFS for the last 20-25 years?

    On the advocacy front, the reason why CFSAC was broadcasted online finally and had more than 800+ viewers inspiring all these online videocasts we've seen in recent months was largely due to the effort of MAME (Mothers against ME), PANDORA, and Wanda Jones. You think it would have been obvious to the CAA that people couldn't attend meetings due to physical/ financial reasons and to exploit the technology we have.

    I have written to the CAA numerous times and don't expect a response most times as they are busy but I have never received a single response to any suggestion.
  11. leelaplay

    leelaplay member

    Hi Gerwyn,

    I know you've said you're not that great on the computer (although you do amazing things with what you do have) so I'll give a rather full explanation in case you're interested.

    The link to the blog is in the title - that's what the blue colour indicates. You should be able to see the link at the bottom of your page when you place your cursor over the blue linked text.

    It took me months to figure out how to to this (using the globe with a link symbol above this box). It's so the page doesn't look messy showing the link.


    CAA-XMRV: Tell Me What It Means To ME? + http://cfsuntied.com/blog1/2010/03/02/caa-xmrv-tell-me-what-it-means-to-me-3/ using the hyperlink symbol (copy the link from the page, highlight the text you want to attach it to, then click the globe, and paste the link in)

    = CAA-XMRV: Tell Me What It Means To ME?
  12. Gerwyn

    Gerwyn Guest

    To me Dr Vernon is not askingthe questions a scientist should three studies in 51 days come on!
  13. Cort

    Cort Phoenix Rising Founder

    The problem for me is that while Gerwyn's explanations are very convincing, except for that other patient group no one has voiced the same criticisms. Racienilli or whatever his name is, has not. Neither did the ME Association. Neither did the CFIDS Association. Nor has MERUK said anything. All these people are in touch with retrovirologists. None of them are concerned about those issues. That's why, even though they seem convincing, I'm gonna wait and see what happens.

    Khaly's blog is not convincing at all to me. The issue about the Oxford definition is overdone. Nothing in that definition says anything about excluding patients with organic diseases other than those that cause severe fatigue. My apologies but it is standard procedure in medical studies to exclude diseases that can cause similar problems in research studies. The Oxford does not exclude all organic conditions.

    Nor does the definition say that people with central symptoms are excluded. This is retrovisionist, wishful thinking on the part of overheated activists. The main problem with the definition as I see is that it doesn't require specific symptoms and it allows more mood disorders in. But it DOES NOT exclude CFS patients. I posted the definition on the Forums - just read it.

    It would be great of if that much maligned definition could be the cause of XMRV's problems but I don't see how it can. Its a false reed.

    Khaly's and Mary's blogs may read well and be full of sound and fury but when I take a close look at them I don't find much there.
  14. Cort

    Cort Phoenix Rising Founder

    We've gone over all of this before.

    Based on discussions here and elsewhere its clear to me that

    • that replication studies are not required to validate a study.
    • There are numerous ways to find a pathogen; usually ALL of them work - none of them have worked in this case unfortunately; researchers could not have been expected to know that their tests would fail
    • The studies did not test against CFS samples but they did test against their ability to find XMRV and all were able to; theoretically they should have been able to find it.
    • The studies don't have to and shouldn't have to duplicate an entire study; they're simply trying to validate that the pathogen is there; once they do that then they can go on to validate other parts of the study.
  15. Cort

    Cort Phoenix Rising Founder

    With regard to the DSM issues the CAA basically said they're working on it and are trying to come up with a careful, well considered response; what is the matter with that?
  16. anne

    anne Guest

    I think the CAA wants to do right by us, and does not want to do anything to suggest this illness isn't organic. I believe a few years ago they really strove to work within the system that they had--deeply flawed, but I think they decided that was the best strategy--and that explains some of the compromises they had to make. I think they've made a huge philosophical change in the last couple of years after trying to get water from a stone too many times.

    That said, I'm bewildered by this press release. Forget XMRV and the WPI, what is Dr. Vernon doing saying the Oxford criteria are "accepted" and that its reasonable to use them because they were legitimate at the time the blood was collected? Why is she validating the work of Simon Wessley and this van der Meer guy? Why is she feeding the myth that the number of quick and dirty studies is significant? She could easily respond to the paper in the same way without doing any of this. It seems so politically careless.

    I thought her last couple of releases were good. And its her right to have questions on the sample--though I do wish they'd sort that out in private. But backhandedly affirming the very stuff the CAA fights against? She's got a point she's trying to make about the science, but I wish she wouldn't do it in a way that validates guys like this. It simply makes everything harder in the long run.
  17. anne

    anne Guest

    Cort, sorry, you posted while I was putting the babe to bed. The issue is not that Oxford is the cause of the study. I agree that SOME of the people in some of these studies probably have CFS. Probably. The issue is simply that it's no long an accepted, widely-used criteria. Her statement treats all criteria equally, really. The statement that we're not going to find XMRV in patients across all seven criteria is very weird (and I know that's not exactly a quote, but I'm tired) because of course we're not. Some of these criteria don't actually work and shouldn't be considered valid research. I just thought it was badly worded.

    Retrovisionist-- revisionist retroviruses? :Retro wink:
  18. cfs since 1998

    cfs since 1998

    I was going to quote you but your changed your post--something about false activism. Which is funny because that's exactly what I see in the CAA. And I don't see much there except that Dr. Vernon seems to be stuck in bureaucrat-like modus operandi.
  19. Cort

    Cort Phoenix Rising Founder

    I see Dr. Vernon stuck in objective scientist mode.

    I didn't get that she says that the CAA accepts the Oxford Definition, the CAA does not accept the Oxford definition and never has. I don't how her statement suggests that she's validating the work of Simon Wessely. She's simply saying that the Oxford definition cannot be the reason that they came up blank on XMRV; and I think she's right; if you look at the definition it only differs in degree from the standard CFS definition (Fukuda definition).

    She's looking at things in a very clinical way; she's assuming the scientists are honest players - she's not determining the studies are wrong simply because of the names involved. Thats what we do :))), I don't think researchers do that. The ME Association stated the Dutch effort was headed by an internationally known retrovirologist.

    I'm afraid these studies ARE significant at least right now. These researchers did, after all, put XMRV into their samples at very low levels - and were able to find it. Given that they should have been able to find it in low levels in the CFS patients samples. The fact that none of the three studies have is puzzling alot of people, no replication study or not.

    Not Gerwyn, I know and I hope he's right!; if he is then Dr. Vernon has missed something very important - something she should not have missed.
  20. usedtobeperkytina

    usedtobeperkytina Senior Member

    Clay, Alabama
    I'm tired of discussing these issues, whose right, whose wrong, whose good whose bad, what criteria, what methods, etc. Maybe it's because I have not felt good for last three days, but I am spent.

    This will all soon be solved when studies are finished and published from all those who are working with WPI. When that occurs, careers and reputations will fall and money will go in one direction. If these studied find it, then issue is resolved. If not, then it is DeFreitas all over again and we can look to other things. Either way, all this is still just debate and opinions. But we will know for sure when these other study results come out. I think I will just wait until then. I don't have it in me any more to care about all the rest of this.


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