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You may wonder why the CAA treats XMRV the way they do... So:

Discussion in 'XMRV Research and Replication Studies' started by omerbasket, Aug 4, 2010.

  1. gracenote

    gracenote All shall be well . . .

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    Well Sickofcfs. I think you're reading into my posts a lot of things I'm not saying. I don't advocate "sending crazy hostile emails to researchers" or "bitching at our allies" or "verbally abusing" them or "demeaning" them and their efforts.

    I'm not sure I deserved the tone of your response. And I don't think I've contributed to the negativity of PR.

    I was trying to make an entirely different point. Maybe someone else can tell me what that was?

    :ashamed:​

    Sigh . . . It's late. I'm off to bed.
  2. IamME

    IamME Too sick for an identity

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    Eh, you have to define "allies". Are you talking about WPI, Wessely or "grey areas" like the CAA (which I think anyone can agree are controversial), and what is your proof that people have been "abusive" rather than merely critical? The CAA have been promoting CBT/GET and like idiocies which counts as abuse in my book, and so were right to take them to task for it, and to continue to pressure them over it to prevent rescidivism.

    I wouldn't recommend people doing the noobish thing of writing angry emails to psychologisers but I don't get the beyond criticism thing of anyone, especially people who some way or other claim to represent. The fact is over the last twenty years an atrociously abused bunch of people (us) has been used as career carrion by somatoform medicine. There are a few good, biomedical researchers, yes, and we usually promote and praise their stuff as much as possible. Sometimes you can broadly support the application of what someone is doing but still disagree with their particular approach/study. However there are a larger number of jobsworthies and careerists around the sidelines who could have spoken out against the systematic fraud of the Wessleyists and their allies but who didn't. Not their job you see. Well if it's not their job it can't be anyybody's job because science is internally adjudicated. We rarely see critical letters or rapid responses to psychobabbles from doctors these days. I don't think us being nice is going to attract more young researchers when the landscape has been signposted with "nothing to see here" by the shrinks and frauds and rivers of funding diverted. In the UK we have huge swathes of charity (AfME, AYME) no more a mouthpiece for Wessely/ the Royal Colleges because they believe it's better to be nice than do the right thing.

    The thing about distorted landscape around ME is it brings out many people's innate prejudices. So maybe they are or were great people outside/before being co-opted but that's not relevent to our concern. McClure was arrogant and unprofessional in her media badmouthing of the WPI and overstating her findings with finality, showing if anything should it's not the "evil activists vs nice doctors" situation which the psychologisers and fellow bigots have been pushing at the research field and the media for years now ("terrorists of health" anyone?). With Wessely muttering in her ear she became a poisoned chalice and with anything spoiled you don't care its history, you get rid of it.

    If this is about Vernon i would say her comments are ambiguous and at any rate she must be aware of how her history with the CDC would make her difficult to trust from patients' point of view. She's blown hot and cold on XMRV IIRC.

    I apologise if If I've got the worng end of the stick. Not been able ot keep up of lae.
  3. parvofighter

    parvofighter Senior Member

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    That was masterful!

    Doesn't matter which end of the stick you got, IamME. That was a masterful post that beautifully captured my revulsion at the abdication by the medical profession on ME/CFS; my slack-jawed and continuing shock at the soul-less shenanigans of the psycholobby; and my trust issues in light of the the CAA's historically ambiguous stance on CBT/GET "treatments" that drive ME patients into profound relapse - or worse.

    Nicely done:
    Thank you!

    P.S. That said, I must say that Jspotila's triumvirate of articles for the CAA on PEM was a welcome reprieve. I look forward to the CAA unambiguously jettisoning the b@stardized ME/CFS definitions in favor of the CCC.
  4. Michelle

    Michelle Decennial ME/CFS patient

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    Wow. As someone who just generally just reads posts here because I'm too weak to drag my fingers across the keyboard of my laptop, I just have to ask: is there something in the air that is making everybody read every post in this thread with the worst possible interpretation?

    A few things come to mind as I've read this:

    The WPI and the CAA are two different organizations with two different objectives. The CAA is an advocacy organization that also funds research done by people outside of the organization. The WPI is a research and (starting soon) a medical treatment facility. Comparing the two is a bit like comparing the proverbial apples and oranges. Please note that does not mean I'm a "CAA apologist" or a "WPI fanatic." Both have their strengths and weaknesses, and one of which, having been around a lot longer, has had a lot more time to fuck things up.

    The WPI's connecting ME/CFS with XMRV was indeed a stroke of brilliant research but it was also the result of stunning luck. A number of serendipitous events occurred to bring about the Lombardi et. al paper. WPI did not go looking for Judy Mikovits and Judy Mikovits did not go looking for CFS or retroviruses. Judy Mikovits was, of all things, working as a bartender (after the biotech firm she was working for went tits up) when Frank Ruscetti suggested she check out the HHV-6 Foundation's conference on viruses given that her field was viruses and cancer. Dan Peterson just happened to also be at that conference because he just happened to be trying to figure out why the hell so many of his patients were developing a rare lymphoma. Judy Mikovits just happened to hear the paper that Dan Peterson was giving at that conference, rushed up to him afterward to give him her card. Yes, it was brilliant thinking and years of working with viruses and cancer that made Mikovits think "hey, that might be a virus or retrovirus." But at the end of the day, it was not at all ordained that she or Dr. Peterson would just happen to both be at that HHV-6 conference. Prior to this point in the story, Dr. Judy may well have ended up working in a number of other places, including a biotech firm that I think we ME/CFS patients can all be glad went tits up.

    As Cort has mentioned, Judy Mikovits et. al. was not coming up with much in the viral or retroviral department. It was Robert Silverman, as I understand it, who suggested to Dr. Judy that she look at XMRV because of the RNase L issue. I'm not exactly sure why they happened to be together talking about RNase L issues in ME/CFS, but again, we are all very glad they did.

    Add in to that all the money Annette Whittemore had to beg and plead for from a number of sources that could just have easily gone the other way, and you have one remarkably lucky alignment of the planets for the XMRV-ME/CFS discovery to have occurred. At the end of the day, we can blame the CAA for being incompetent, and/or making some poor decisions and/or tough decisions that we may wish they had done differently, and/or being too focused on their institutional and/or personal interests. But we cannot blame them for being unlucky.

    At the end of the day, I fail to see the point of playing "gotcha" with some speech Suzanne Vernon made over a year ago where she would have done well to have used a better choice of wording. So what? Off with her head? Get a rope? Be angry, be very very angry? I do find myself much more sensitive to how they respond to XMRV or skeptical about Vernon given her tenure with CDC (though I was pleased with her response to their joke of an XMRV study), and I appreciate the need to vent our collective and individual frustrations with them. But at some point looking for every tiny possible thing they may possibly maybe have misspoke about just doesn't seem helpful. I mean, does this comment she made in that paper a year ago explain why she just accused the CDC of doing a study where they deliberately tried NOT to find XMRV? Does everything have to have a hidden meaning?

    Yes, I do think examining the direction the CAA is going (great analysis, Dr. Yes!) is vital -- as is examining the direction the WPI is going, for that matter. And I understand that the enormous dearth of information can make us so hungry for any morsel of news that we will parse through the tea leaves, regardless of how irrelevant they are to the big picture. But at the end of the day we've got to focus on the big picture rather than the tea leaves and the big picture is far less binary (good vs evil; us vs The Evildoers; friends vs enemies) and much more complicated.

    And if anything, this thread has reminded me of how difficult it is for people to admit they are wrong. They will cling to their position regardless of how much evidence to the contrary and small the stakes. And when the stakes are big, well, it's no wonder ME/CFS research is where it is.

    Okay, that's my post for the next month or so. ;-)

    P.S. and utterly off topic: Judderwocky - In your comments if you replace "CFS" for "diabetes" and "spends too much time laying in bed" with "eating too much sugar" you get this situation we're in with our Damn Disease. The point Angela was trying to make is that conventional medical wisdom - including among the nurses at the clinic you worked at -- can be wrong and blame the victim, regardless of the science. There is even growing evidence that people who cannot stop eating (sugar or otherwise) have different neurochemistry that makes it more difficult than those without that neurochemisty to "discipline" themselves. And, of course, there's the problem of people like my dad who will eat a half gallon of ice cream every night but remains woefully underweight while I (adopted), who is careful to keep my calories between 1300-1500/day remains morbidly obese. Just because the conventional medical wisdom says it's the sugar, doesn't mean it is, just as the conventional medical wisdom that says we all just need to get the hell out of bed is false.

    NOW I'm done. ;-)
  5. jonc

    jonc

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    Nice post Michelle, thanks for spending the energy to write it.
  6. V99

    V99 *****

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    Sickofcfs, I think you are lashing out, Gracenote in no way said any of the things that you added to her comments.

    As for people verbally abusing our allies. Well, who are our allies? Peter White claims to be, but he most certainly is anything but, same goes for AFME. We have to be able to ask serious questions of these groups. This needs to be stated clearly, we do not work for them.

    As for the CAA, well who are they. How close are their ties to the Government? Are they close enough to always get accurate and up to date information? Are they too close, that they are unable to provide certain information? Taking a step away from the CAA, what other large charities are there for patients in the USA? Does the Government have to work with the charities? These are all fair questions.

    As for Vernon, her comments cannot be ignored, they mean something, I would like to know more. I have ask one particular question several times, and no one has attempted to answer it. If XMRV research went away tomorrow, will the CAA continue to fund research into retroviruses? It's a simple enough question, but a very important one.

    The other issue that is circulating is the disgraceful idea that somehow patients have anything to do with the science or scientists involved in researching their disease. This is propaganda spread by those who get please in seeing sick people bullied. There have always been plenty of brilliant minds working in ME research, but they are unable to get funding. This being the very reason why some of them end up leaving the field. People like the Ruscetti's, Singh, the Light's, have still be drawn to the disease. Those who leave the field do so for one of two reasons. One they cannot get funding and are driven out, and two they never had anything to contribute anyway. A recent casualty was Kerr, but again he was given no choice. They wanted him out because he dared to look at the disease properly. McClure, it seems, was another. For her the disease was too hard to understand, and she quit in a huff. The letter she received may have been out of order, but it if I remember correctly, the person said she should be fired, I can't remember if they made any threat. As for attracting young researchers, well there are quiet a few at the WPI and elsewhere. It's clearly not true that somehow we are persuading them to go elsewhere. Most will choose an easy path, with promises of a career and money. It is also very easy to avoid criticism in this field. Simply work hard, produce solid science, don't fall for the CBT/GET crowd, keep looking, and don't blame the disease. It's really not that difficult. Any worthy scientist would simply be drawn to this disease out of intellectual stimulation. It's not for those who want to slowly tick by in life.
  7. Sam Carter

    Sam Carter Guest

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    I agree it's a very important question and the answer is yes research into pathogens will continue because pan-viral / pan-bacterial microarrays (and the computing resources required to mine the data) get cheaper and more powerful each year. Joe DeRisi chose not to patent his virochip making it possible for skilled "amateurs" to build their own - it's worth googling "open source biology".

    We are in a fantastically strong position compared to when Dr. DeFreitas was conducting experiments, and, as a patient community, if we are not happy with institutional research we can fund and organise our own.
  8. jspotila

    jspotila Senior Member

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    This is not a simple question, and not because it involves retroviruses. Someone asking if the Association will continue to fund viral pathogen research or orthostatic intolerance research would also not be posing a simple question. It reminds me of the multi-layered hypotheticals we had to answer in law school.

    Even if you waved your magic wand and XMRV disappeared tomorrow - completely disappeared - there is no way to say that the Association would or would not fund research into retroviruses. Here are some of the other layers: are there any other human retroviruses (infectious and/or endogenous) to look at? any researchers who want to look at them? technology that would enable researchers to find them? are there promising targets for biomarkers and therapeutic interventions that do not involve retroviruses? what are the Association's resources? what should be the next strategic priority for the Association's investment of resources? does the Association receive grant applications for retrovirus research?

    Because there are so many layered questions, dependencies, complexities and unknowns inherent in your question, the only answer is that the Association will continue to pursue its strategy "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment."
  9. V99

    V99 *****

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    I would agree, and it is great to be able to support such research"
  10. V99

    V99 *****

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    Yes, I agree there are lots of other points that would effect that particular question. However, the question of retroviral research is one that should be a focus of any body that has a large research budget. Biomarkers and interventions are important, but you will never be able to mount truly effective interventions or even a cure, if you do not understand how the disease operates, i.e. what is the starting point. Since the first moment that this disease was recorded it has always been assumed that a virus was at play, so research should continue to examine this possibility. It has never been a wild guess, but a carefully constructed hypothesis based on symptoms and signs presented by the patients. Many researchers would tell you that biomarkers already exist, but they are being ignored. In the UK the attitude is that currently there are no therapeutic interventions except CBT/GET and antidepressants. The science that supports this POV is virtually non-existent, but they continue to lie. Only research that goes beyond these will provide true interventions, so far nothing has come through to patients here. Even if there has been exhaustive study of known viruses, dependant on the technology available, as more virus's and retrovirus are discovered, they too should be examined for a possible link to the disease. It would be awful if patients were left to suffer at the hands of ignorant and prejudiced doctors when the cause is a know virus, that has not been studied for an association to this disease.
  11. SOC

    SOC Moderator and Senior Member

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    I entirely agree that the psychologisers are in no way our allies. What they have done to ME/CFS patients is abusive and unforgiveable. And yes, we have every reason to be angry at them --and to provide well-earned, accurate, and constructive criticism of their work wherever we can.

    No doubt in my mind about that. It didn't help -- at all -- that some noob(s) wrote her hatemail, which only confirmed the information Wessely was muttering in her ear about ME/CFS patients. If there was any hope of turning her from the dark side ;), it went out the window with that hatefulness.

    Yes, this is largely about Dr Vernon -- at least the thread several pages prior to this post has been either about Dr Vernon or the CAA.

    I don't agree with everything the CAA has done. So what? I don't expect them to be everybody's ideal patient organization -- there's no way they can be. They've done a lot of helpful things, as Cort has pointed out, and I'm grateful for them. They are not my enemies.

    A good patient organization needs to keep their view broad. I wish that weren't so, and I'll bet the CAA wishes it weren't so. If there was a single, clear answer to what is causing ME/CFS and how to treat it, I imagine they'd be happy to dedicate everything to it. I doubt that we will every find a time when there isn't some controversy in the field, whether it's in definition, treatment, or something else.

    Scientifically, XMRV is still in question as the be-all and end-all of ME/CFS. It's getting clearer, but we're not nearly 100% certain there's nothing else to investigate. We'd all be PO'd if the CAA dropped all other investigations to focus on XMRV if XMRV had turned out to be a dud. I don't think it will, but it's certainly not guaranteed and the CAA don't have magical futuresight.

    Some of us, maybe 20% or so, appear to be XMRV negative. Do we want the CAA to abandon those people, who may have some of the dysfunctions or pathogens or whatever that so many people are criticizing the CAA for checking into? I don't. The XMRV negative segment is going to be in great need of non-XMRV research.

    I know the landscape of ME/CFS in the UK is very, very ugly. I have a great deal of sympathy for those who are suffering through it. But this is not playing out in the UK, as it happens; it is playing out in the US where the landscape is different. Not pretty, certainly, but not nearly as bad as it is in the UK. Our charities are not all mouthpieces for Wessely et al. There are doctors and researchers genuinely trying to help us. There's still plenty of bias, without doubt, but there's also some reason for optimism.

    Constant negativity -- "this will never happen", "of course that will be quashed", "everybody is against us" -- may be appropriate in the UK ME landscape, I don't know. What I do know is that it isn't helpful. We have a chance at this point in time to see genuine acceptance of ME/CFS. I think our best move, by far, is to nurture that chance (and those who are giving it to us) as much as we possibly can -- to feed that tiny little flame, not pour water on it.
  12. SOC

    SOC Moderator and Senior Member

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    Wow, if that isn't a prime case of the pot calling the kettle black, I don't know what is.
  13. V99

    V99 *****

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    If XMRV explains only 10% of patients, then that is a good thing for everyone else, because it will remove a significant group from the muddy biological investigations. It's a positive for everybody. If there is any lesson that should be taken away from the history of ME, it is that no disease should be ignored. I intend to make sure that no one is left behind.

    I would totally disagree that this is being played out solely in the USA, it is a world wide issue, with research taking place throughout the world. The UK WPI study will be very significant, as will the Swedish ME Research UK study, the negative Spanish study, etc. When you say that there is 'constant negativity' I have no idea what you are referring to. We are all hopeful that XMRV will pay off, and that the a positive replication study will soon be out, but we are also mindful of our history. If you are not prepared for all eventualities, then you are likely to miss opportunities to change the situation for patients. Those who are trying to damage XMRV are a different matter. As for what is appropriate in the UK, I see no difference between how patients feel whether in the UK, USA, or anywhere else.
  14. V99

    V99 *****

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    So you feel it was appropriate to critique gracenote's comments the way you did?
  15. Cort

    Cort Phoenix Rising Founder

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    Dr. Vernon's writings were not 'comments' they were part of a scientific paper. If you can't handle a researcher accurately reflecting the state of the research at the time and you hold that researchers statements against them as if they were written today than you lack credibility in my opinion. You're taking things out of context.

    Whether the CAA would fund retroviral work if XMRV does not pan is a question none of us can answer so please stop asking us that question and ask the CAA it.

    Verbally abusing our allies versus verbally abusing our non-allies? I don't think it's good or helpful to verbally abuse anybody. Anybody who goes around verbally abusing researchers or groups or whoever to get their rocks off ( because that is what they're doing) is not my ally.

    CFIDS Association being too close to the federal government? The CAA having too many contacts in the federal government! What in the world are you talking about? I hope they have as many contacts in the federal government as they can. I want them to have contacts all over the place. I want them to be speaking to as many people they can. Do you not want them to have contacts in the federal government.

    What are their ties to the federal government? Are they beholden to them? The answer to that is absolutely not - they don't receive any funding from them -l which has been mentioned many times before - they are beholden to the patients.

    You keep talking about a conspiracy to stop XMRV. That is a very loaded word. We really try to stay away from the 'conspiracy theory' scenario's in order to promote a serious discussion of the issues. If you have evidence of some underhanded conspiracy against XMRV then please present it or talk about something else. What I see are competing camps of researchers with different opinions on an unresolved issue each battling for their own opinion. Yes its not pretty, yes we'd rather have one side win but a conspiracy is an entirely different thing; it suggests manipulating evidence, stopping evidence from being presented, etc.
  16. V99

    V99 *****

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    Her comments, even if part of a scientific paper, were still incorrect. The science does not support her conclusion.

    Not sure who you are referring to when you are talking about people verbally abusing allies? McClure?

    That is interesting to know. As I have said before I am trying to find out who the CAA are, and all the point's you mention were questions. Does the CAA have any obligations to the Government?
  17. Cort

    Cort Phoenix Rising Founder

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    Gracenote it sounds like you are in favor of hitting back - if you're hitting the right person. It doesn't matter who I pick - the fact is Dr. McClure in a public interview said she had gotten crazy e-mails in CFS patients and that she would never work in this field again. That gets around. She is a retrovirologist not a CBT practitioner! We already have enough problems attracting researchers - now, we have to worry about professors telling graduate students both that there are no opportunities in that field and they'll just bring you grief anyway.

    Who is saying play nicely! Just don't play crazily. Don't be stupid.
  18. jace

    jace Off the fence

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    Sadly, is this not what we have, with the CDC retrovirology paper clearly manipulating evidence (poor cohort, wrong methods, ignoring help and information) and the NIH/FDA Alter paper still awaiting publication? There are countless other examples throughout the history of ME/CFS research and treatment.
  19. Cort

    Cort Phoenix Rising Founder

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    This forum is not about repeating again and again and again your strongly held opinions as if they were fact. You have repeatedly said Dr. Vernon was wrong about her statementl. If that it is true then either post your evidence for your assertion or stopping making the statement. This is a "forum' - not a platform for someone to state their beliefs without evidence.

    Honestly I feel like I am paying my head up against the wall again and again. Jennie has stated the CAA has no contracts with the government! Can we get off this now?
  20. V99

    V99 *****

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    There is no one here that I know of that is being crazy or stupid. McClure is manipulating those around her and spreading misinformation, because her research was not good enough. It's best to ignore her.

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