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Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by charityfundraiser, Jul 2, 2010.

  1. SOC

    SOC Senior Member

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    Could it be as simple as: Wilhelmina Jenkins, as a scientist herself, understands that most research scientists are neither political nor visible and are therefore completely unused to being addressed by the general public, particularly angry members of the public? It's not exactly sympathy.... maybe more a recognition of their shock and surprise at personal attacks.... Just thinkin'
     
  2. akrasia

    akrasia Senior Member

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    Sick of CFS, do you realize that the PLOS paper was not an innocent inquiry into XMRV, but a politically motivated hatchet job, done on the quick and dirty, aimed at burying the results of the Science article. This was not disinterested science. McClure wanted to be first off the mark and immediately called a press conference to denounce the WPI's results.

    As for her remark that " "Nothing on God's Earth could persuade me to do more research on CFS," I bet if God offered her a million pound grant to study the illness, she would without a second thought. And besides, what kind of ethics leads someone to abandon research into an illness affecting upwards of 17 million people worldwide because of a handful of obnoxious letters?

    At best Wilhelmina Jenkins is dangerously naive. Her instincts are indisputably bad.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    more money and less controversy in other illnesses she can study.

    I couldn't help but laugh at this quote: "It's ghastly."

    I laughed again when I typed it.

    Some angry patients scared her. As I said before, glory does not come to the timid. (well, it isn't exactly what I said, but something similar)

    Tina
     
  4. shiso

    shiso Senior Member

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    I found "It's ghastly" funny too. Poor, poor, Dr. McClure. May she never touch "CFS" with a ten foot pole again, lest it taint her respected reputation. Besides, we patients are way too uncivilized and ghastly for her.
     
  5. taniaaust1

    taniaaust1 Senior Member

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    I agree with that statement, many who are in the know are very very peaved off and so we should be. We all deserve better than the funding and what other little we all compared to other illnesses. We've all got a lot of thinking time on our hands and we are all sick of being discriminated against.
     
  6. Mithriel

    Mithriel Senior Member

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    I was more upset and offended by this than anything Myra McClure said.

    We support those researchers who work honestly and do proper science whether they give the results we want or not.

    Have we bad mouthed Kerr on this forum? No, even though he didn't find XMRV in his patients, he tried in an honest way and did not make snide comments about the WPI or make claims beyond the facts. We discussed his methods and felt things might have been better but he was not ranked alongside McClure and the Dutch people.

    A recent study funded by ME Research UK has not upheld the elastase link. Disappointing but how much hate mail have they received?

    If scientists do proper studies they will be accepted by the vast majority of patients (there may be a few nutters out there) even if their results disappoint.

    It is the arrogance of some researchers which anger us and the way that some people abuse the scientific process to get results that bolster their own agendas instead of looking for things that will help us. They are exploiting our suffering for their own gain and anger is a proper response.

    No scientist who sets out to do a proper study need fear an angry reaction even if the results are not what we want.

    How dare a patient claim otherwise.

    Mithriel
     
  7. SOC

    SOC Senior Member

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    Whoa! Ease up a little, akrasia. I don't realize the PLOS paper was "a politically motivated hatchet job", but I do suspect it.

    Are you implying that all research scientists are politically savvy and plan their research and their lives around some political goal? Certainly some do -- Wessely comes to mind as the prime example. But the vast majority are quiet, scientific types, who work with and talk with other quiet scientific types. They don't have a political agenda and they don't talk to the media. Then there's Wessely and Reeves, but they are in a minute minority.

    If you listen to the interview on ABC Australia, you'll hear Dr McClure say that her lab got into testing ME/CFS patients for XMRV "accidently" and that "this is not a disease that we have any expertise in or that we work on". They were sent samples by the Kings College people asking that they be tested. Notice that she (or her immediate coworkers) did not select the patient cohort or take the samples themselves. They were given samples that Kings College told them were from "people who were seriously ill from chronic fatigue". We all know the importance of cohort selection including distinguishing between people with ME/CFS and those with chronic fatigue. It's quite possible that there was, indeed, no XMRV in the samples they were given. Is that their fault, or could it possibly be that they were sent a set of samples that were unlikely to have XMRV?

    All they were asked to do was test samples sent to them using their "very sensitive assay", which they did and found no XMRV. So, is their test flawed? Maybe, but they are finding XMRV in prostate cancer patients, so that theory needs further justification. Did they get a bum sample set from Kings College? Interesting question. There's a group that has something invested, politically, in not finding XMRV in ME/CFS patients. How representative of ME/CFS patients was this sample set of "people seriously ill with chronic fatigue?"

    If you listen to the interview, you will also hear Dr McClure say, "It was not our mainstream interest....the reason that we rushed into print with this..... was that we had some evidence .... that people were being offered this test .... and much, much worse than that that patients were being offered antiretroviral therapy, the kind of therapy that you would give HIV patients...so we wanted to put a stop to that because we felt it wasn't ethical."

    Doesn't it sound to you like some naive scientists were fed a load of bull droppings? They knew nothing about ME/CFS when they tested the samples, they didn't even know the provenence of the samples if they were "blinded".

    I suspect we may find a similar situation with the labs that did some of the testing for the most recent CDC paper. Labs were sent samples and they tested them using methods they are either good at, or were asked to use, or both. They could easily have done an excellent job of what they were asked to do.

    Some perfectly innocent, if naive, scientists may soon end up with egg on their faces (and damage to their reputations) because they accepted their colleagues (Kings College and the CDC) at face value.

    And I do feel sorry for them. Dr McClure is losing my respect as she continues to backpedal while not being willing to say outright that Kings College dumped her in a load of s&!t. Her ego is probably not going to let her admit that she participated in the publication of a bogus paper. That doesn't mean she had any idea of a nefarious purpose when she got involved.

    I'm not defending Dr McClure, nor is Wilhelmina Jenkins, I believe. But I concur with Ms Jenkins' pity for the scientists, who, unused to the politics and deception being practiced, find themselves suddenly in the midst of a fight they know nothing about.

    I dispute your "indisputably bad", and raise you a "too politically/media innocent to look for the ugly connotations people can put on her innocent words"
     
  8. julius

    julius Watchoo lookin' at?

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    Sickofcfs,

    The way you describe McClure's involvement is exactly the way I understand it as well.

    As far as she knew, Simon Wessely is a "well respected scientist" (hang on a sec, I'm gonna be sick) and he came to her with this tale of some people in the States were offering bogus tests and dangerous treatments.....so she believed him and got on board.

    If I didn't have personal experience with CFS, I might have believed him as well.


    There are many, many horrible things going on in the world right now. At the moment I am 'abandoning' millions of people...so are you. People suffering from drought and famine, genocide, poverty, countless diseases....theres just no way to take on every cause that presents itself.

    I don't hold Myra Mclure responsible for my suffering. Wessely and Reeves perhaps....but not Mclure.
     
  9. ixchelkali

    ixchelkali Senior Member

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    Wilhelmina Jenkins' instincts aren't "indisputably" bad, because I (and apparently others) do dispute it. I don't know the specific context in which she said this; none of us do. We are an angry community, and justifiably, rightfully so. We're so angry that we even turn on each other if it appears that one of us isn't angry enough.

    But some people can be angry and at the same time have compassion for some of the targets of our collective anger. Call it "idiot compassion" if you will, or "hopeless naivet." I don't agree, but that may be because of a basic philosophical difference: I believe that compassion is seldom misguided. Perhaps Wilhelmina Jenkins thinks like that, or perhaps as sickofcfs suggested, she sees things from a research scientist's point of view, or perhaps she's just by nature a moderate person. Whatever, I think Wilhelmina Jenkins has paid her dues. She has suffered with this disease, she has watched her daughter suffer, and she has used her precious supply of energy to fight on behalf of patients for years. I think she deserves better than personal attacks.

    I don't think our cause or our community is served by viewing anyone who says something we disagree with as having gone over to the dark side. We can and will disagree about a lot of things. We will be at different points along the anger spectrum. But we can disagree without attacking each other. We don't have to have such an angrier-than-thou attitude that we cast anyone who speaks moderately into the same bin with the Simon Wesselys and William Reeves of this world.

    We have a great deal to be angry about. We've been lied to and lied about by people in power, and it has cost us our lives, our livelihoods, and our reputations. I guess what I'm saying is let's try to focus our collective anger on that, and not turn it against ourselves. As we go forward, I think we will need both angry and moderate voices. I don't want to see our moderate voices silenced because they're afraid that when they speak they'll be attacked by fellow patients. And I don't want our angry voices to dissipate their angry energy that way; we need it to remind us that what has been done, and continues to be done, to us is a breach of our most basic human right, the right to live.
     
  10. akrasia

    akrasia Senior Member

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    --------------------------------------------------------------------------------------------------------------------------
    Wilhemina Jenkins was/is? a long serving CAA board member. Is she naive? I don't know. If she is, she wasn't competent to hold that position. But this goes to the larger differences I have with the CAA and its "don't make trouble"approach to advocacy.

    And by the way, SickofCFS, I knew you were kidding about the blood donation.;)
     
  11. akrasia

    akrasia Senior Member

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    posted by akrasia
    what kind of ethics leads someone to abandon research into an illness affecting upwards of 17 million people worldwide

    Julius wrote:
    There are many, many horrible things going on in the world right now. At the moment I am 'abandoning' millions of people...so are you. People suffering from drought and famine, genocide, poverty, countless diseases....theres just no way to take on every cause that presents itself.

    I don't hold Myra Mclure responsible for my suffering. Wessely and Reeves perhaps....but not Mclure.


    Julius,

    We are all implicated in each other's suffering but when you come in for the close-up some of us have more responsibility than others. I disagree with your assessment of the situation and her intention as I outlined in the 2nd post addressed to SickofCFS. Would she say that she wasn't going to study HIV because she didn't like homosexuals, or found AIDS activists obnoxious? Using the fact that someone said she didn't know her ass from her elbow to excuse herself from studying a serious illness shows very little character. We all have our moments of ethical challenge. This was one of hers, and at least in the short term, she blew it.
     
  12. julius

    julius Watchoo lookin' at?

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    She was never studying CFS. Her lab was contracted to run samples.

    Right from the beginning her intention wasn't to become a CFS researcher. The rude letters (which I don't think could have been productive under any circumstances anyways) were more or less after the fact.
     
  13. akrasia

    akrasia Senior Member

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    Yes, but she said that she no longer wanted anything to do with CFS and XMRV BECAUSE of those letters. And this isn't about her becoming a "CFS" researcher. It's about studying XMRV in the context of CFS. She is a retrovirologist. They study retroviruses. M.E. is very likely caused by this virus.
     
  14. akrasia

    akrasia Senior Member

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    Have you all forgotten that she said that the Science paper should never have been published, that it was premature? That it was lab contamination? She's a piece of work.
     
  15. julius

    julius Watchoo lookin' at?

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    No, haven't forgotten. Just don't think it's worth worrying about.

    And not worth sending hate mail that sets us all back in the long run. And certainly not cause for comments like;
     
  16. SOC

    SOC Senior Member

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    Thanks, luv. So kind of you to mention it.

    As for the rest, I'm not going there. I'm sticking with ixchelcali and julius and saving my anger for the major players. You are certainly free to take the path you outlined, but you'll never take me with you, so I don't think we need to continue this conversation. I don't, anyway.

    Best of luck to you.
     
  17. shiso

    shiso Senior Member

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    I agree with this, ixchelkali. I think that regardless of how one has chosen to deal with this disease (quietly or noisily), we all feel a sense of injustice about the way ME/CFS patients have been treated (or more accurately, not treated), and that MORE angry voices are needed, both aggressive ones and moderate ones.

    Moderate does not equal wimpy, and moderate does not equal incompetent. Moderate (most of the time) got me pretty far in my career (before it was cut short by this disease) where overt aggressiveness was more often rewarded than not; but moderate made me credible and well-respected. Others achieved results by being much more aggressive--my point being that both can be effective is in certain situations.

    But that's where the comparison ends. When I was healthy, I was lucky enough to seldom have the need to be non-moderate. But I learned the hard way very soon after I got sick that especially with a disease like this, there are times where moderate simply won't cut it. Moderate didn't work when I faced some adversarial financial situations after I became unable to work. I was forced to stand up for myself (non-moderately) in ways I didn't know I was capable of - simply to avoid getting totally screwed over.

    Getting back to the point, I do think moderateness has its place, i.e. in communicating with the Powers That Be, i.e. gatekeepers of "evidenced-based medicine" who need convincing that this disease needs serious investigating in a language the PTBs can digest. But I am also very convinced that ONLY being moderate - has gotten and will get us absolutely nowhere, and that anger must be expressed when anger is due, albeit against worthwhile adversaries (i.e. not fellow patients. . .as for Dr. McClure, she gets no love from me, but neither have I sent her any hate mail).
     
  18. cfs since 1998

    cfs since 1998 *****

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    Wilhelmina Jenkins is Kim McCleary's mother in law.
     
  19. Mithriel

    Mithriel Senior Member

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    The notion that we are an angry aggressive community is a myth put about by the ones whose career is based upon us having a mental illness, unpleasantly neurotic. They roll it out when it suits them. I have no doubt that McClure got the letter she says, but how bad was it? She put herself in the public eye and anyone there takes the risk of a response from the odd unbalanced person. As I said, scientists who simply publish their results have not complained of attacks.

    Where we are conspicuously angry and assertive is in deconstructing the rubbish they publish as "peer reviewed science". They don't like being faced by a knowledgeable patient population and that is when they trot out how aggressive we are.

    If Wilhelmena Jenkins has been part of the CAA she should have known better. It is another instance of advocates agreeing with the negative views the psyches pour out about us. She couldn't have defended us?

    McClure may have done a good piece of work using a good test but even so, all she showed was that her specimens did not contain XMRV. German scientists in the same position went back and tried to find out why they had got that result.

    McClure instead bad mouthed the WPI in the media she spoke about contamination, but in the comments after her paper she agreed that their precautions were good so contamination was unlikely. Then she did that editorial in the BMJ where in a totally unprofessional manner she did not say that she was author of one of the papers and the WPI was not given a right of reply.

    She has not acted as a scientist, she has moved far beyond the scientific method into the world of scientific politics and she is being attacked as a politician.

    Scientists are safe from us. Saying publicly that they are not is indeed dangerous to me and to everyone here because only research gives me the chance to have some relief of the suffering I endure constantly. How many more will die if a single scientist is deterred by Ms Jenkins' statement.

    If she has been part of an advocacy group she should have known better. I would be more forgiving of a quote from a naive patient.

    At the very least we should all be careful that we do not give quotes that can be used against us. Surely we can agree on that.

    Mithriel

    Mithriel
     
  20. jspotila

    jspotila Senior Member

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    McClure is not the only scientist to receive emails from patients. I saw a video excerpt in which a researcher comments that there are an estimated 17 million people in the world with CFS, and "almost every one has contacted my office" (or words to that effect). Researchers, in my experience, do not interact very much with populations affected by their work, so I think some may be experiencing a level of public interest in their work that they have not previously experienced. In fact, the leak of Dr. Alter's presentation at a closed conference is a perfect example.

    I would be very interested to learn more about how researchers in other contexts have dealt with intense interest from a patient community. There must be parallels in the HIV/AIDS movement and other illnesses.
     

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