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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 5, 2011.

  1. Parismountain

    Parismountain Senior Member

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    Ditto. Well said citybug.
    Lily, Wayne and ukxmrv like this.
  2. currer

    currer Senior Member

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    Free speech is free speech.

    But you are right I think only a small minority of members agree with this editorial.

    Most people will be upset by it.

    And we still have not fully heard the other side of the story from Drs Mikovits and Ruscetti.
    I am sure Ruscetti will have plenty to say.

    Things could yet change dramatically.
    Lily, Wayne and ukxmrv like this.
  3. Waverunner

    Waverunner Senior Member

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    I agree with everything Cort said. Claiming that "XMRV will be worse than HIV AIDS in Africa" is not very helpful when you cannot prove your point. The fact that they weren't even able to run a correct PCR while having contamination all over is far from helpful as well. All the conspiracy people have to defend the great XMRV theory now of course but face it: The XMRV-CFS connection is dead.
    Firestormm likes this.
  4. Bob

    Bob

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    I agree that it wasn't a helpful thing to say, but it was hardly crime of the century. We all say unhelpful things sometimes.


    I wouldn't say that this is 'ridiculous', but hopefully the results of the BWG will move the science forwards, even with the failed results.


    I'm not a conspiracy theorist in this particular instance, but I would like to see the XMRV research continued, until we have a satisfactory conclusion to the various aspects of the research.


    I'm not sure what you mean here. Even Coffin has detected XMRV in human-derived tissue, and suggests that it's a man-made virus (or created in a lab).

    So the scientific consensus seems to be that XMRV is very much alive.

    There's also the various positive prostate cancer studies that haven't been explained yet.

    Also, even if there is no association between XMRV and ME, the antibody results are very interesting, and if replicated (as they have reportedly been with Hanson), then they would be worth fully investigating, and they could potentially be used as a biomarker. If they don't indicate the presence of XMRV, they could indicate activated human endogenous retro-viruses, or there are many other possibilities.
    Wayne, OverTheHills and currer like this.
  5. floydguy

    floydguy Senior Member

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    Yes, perhaps Judy is a bit crazy but in the words of Steve Jobs (RIP):

    "Because the people who are crazy enough to think they can change the world are the ones who do."

    John Coffin, Suzanne Vernon et al aren't changing anything - they can't think out of the proverbial box. ME is most likely going to be changed by someone a bit radical.
    Lily, Wayne, OverTheHills and 4 others like this.
  6. Marco

    Marco Old blackguard

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    I have no axe to grind either for or against Judy Mikowitz/WPI but would make a few observations.

    The BWG results; the (now terminated) relationship between JM and her employer and JM's personal style and public pronouncements are three seperate issues. While each may have had an impact on the other we have no way of knowing that and the concatenation of the three for the purposes of constructing a narrative of 'why she had to go' is more typical of tabloid journalism or conspiracy theorising.

    Cort states : "Dr. Mikovits aspersions against researchers resulted in so much anger in some quarters that a CFS researcher on a federal grant review reportedly refused to OK any grant that had anything to do with her."

    I've seen many 'aspersions' cast during this whole affair not least Coffin's 'Joan of Arc' quip. Scientists can be a pretty bitchy and abrasive lot. But anger or dislike of a researcher's personal style or what they said about another researcher is NOT valid grounds to veto Federal grants. If such a veto actually occured this is most likely a flagrant breach of public procurement protocols.

    Further : "Dr. Mikovits embrace of the Lo/Alter and Hanson findings was at odds with the rest of the retrovirology community which viewed them most likely to be contaminants."

    If I recall correctly Lo/Alter embraced the Lombardi et al paper by stating that their results were highly supportive. Others in the retrovirology community were at pains to distance Lo/Alter's poly sequences from XMRV on the basis of their difference while simultaneously panning the lack of variability in XMRV as evidence of contamination. Given that the sequence that appeared in the Science paper we now know was Silverman's clone its all a little moot. Finally 'most likely contaminants' does not constitute proof.

    While I can appreciate that Cort might feel the need to summarise or editorialise on behalf of 'the community' there remain too many unknown's at present to defintively state what happened; who did what to whom or whether JM's departure is good or bad for WPI or for ME/CFS patients.

    A better use of time would have been a fuller (i.e. non-twitter) summary of the recent IACFS conference.


    PS - While its easy to pick up on the 'worse than aids' or 'XMRV may be associated with autism' comments made in presentations, I don't see anything qualitatively different between these and exoratations that 'XMRV is dead - time to move on' or the numerous conclusions that XMRV was not associated with ME/CFS that appeared in print when the available evidence did not support these conclusions. Not to mention the inflammatory insinuations that ARV use was rife as were 'death threats' against researchers.

    I certainly don't support unwarranted hyperbole but the hyperbole happened on all sides and I don't hear any other calls for heads to roll.
    Jemal, Lily, SOC and 10 others like this.
  7. floydguy

    floydguy Senior Member

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    Nicely said.
  8. GaryK

    GaryK

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    I totally agree citybug! VERY POOR taste to do this to us members at this time.:rolleyes:
  9. asleep

    asleep Senior Member

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    Well, at least Cort admits this time that he is editorializing.

    As for the XMRV will be worse than HIV AIDS in Africa "quote," the full quote is from here (emphasis mine):

    When the controversial part of this quote is not removed from context as Cort has done, it's clear that she was referring to the epidemic threat of HGRVs. If indeed there is a possible background infection rate of ~2-4%, then this quote is, in my opinion, not particularly outlandish. Currently, HIV infects ~5% of Sub-Saharan Africa. Left unacknowledged, unresearched and untreated, HGRVs certainly could become worse from an epidemic standpoint.

    All that said, this point probably didn't need to be made at the time.
    Lily and Wayne like this.
  10. Dreambirdie

    Dreambirdie work in progress

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    Cort, I add my voice to the chorus. This was a bad idea, and not considerate of the many people who are still dealing with the shock and upset of recent events.

    That Science paper was a game changer for all of us. In spite of, and maybe also because of, the HUGE controversy it created, it was really the best thing that has happened for the ME/CFS community in 30 years. I am grateful to Judy Mikovitz for taking on that challenge and sticking to it, for all our sake. Though it's true that she can be feisty and outspoken and a bit overreactive at times, it sure looks like she's not the ONLY one in the scientific community who is guilty of that.

    The story of HGRV's is not over yet. The ongoing search for answers is a marathon, and not a sprint.
    Lily, Wildcat and Bob like this.
  11. Cort

    Cort Phoenix Rising Founder

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    I recognize that many people still believe that HRGV's have at last a 50% chance of working out and that many people admired and do admire Mikovits and they may be (or will be) upset by this editorial. All I can say is that for me it was a long time coming. Many of the statements that thrilled the patients left me wincing and frustrated.

    While Dr. Mikovits made a great contribution by bringing the XMRV discovery to the fore (whether it works out or not) it was clear, to me that her tenure left the WPI with burdened with alot of problems and I think as a community we've been dancing around that issue for far too long.

    Perhaps this was not the time to discuss that - I don't know. I did feel that Annette made the right if perhaps unpopular decision and I wanted to support her. That was in part why I did the blog.

    I believe Dr. Mikovits actions made it more difficult for XMRV to get the research it needed. Remember that CFS researcher who swore she would never approve a grant for Dr. Mikovits? That's the problem and that's one reason why the WPI, for the most part, was left out of the hunt or XMRV after the Science paper came out.

    I want to point out that with Dr. Mikovits termination we have exactly the same problem occurring again. If you were convinced that you and only you held the key to CFS wouldn't you find a way to get along with the employer that was giving you a place to do that research? I would make sure that I got along with my employer because my work was more important than any personal disagreements I had. People who have jobs and must support their family do this all the time because they must feed their families. But once again, Dr. Mikovits put her anger or frustration or whatever ahead the CFS community needs - I feel that very strongly - and she's gone again....and we'll see if this work can be resurrected again. It's very possible that it won't be.

    Think about that. I don't know but my guess is that she will have trouble, given the controversy swirling around her, landing a job at another institution. (She has after all been called a Joan of Arc figure by a very highly respected retrovirologist). If she can't then the chance for more HGRV research may very well have evaporated because Dr. Mikovits couldn't find a way to work with Annette Whittemore.

    I obviously hold the ability to do that in much higher regard than others but this is what has been agonizingly frustrating to me almost since the begining - but obviously not to some others; the fact that she again and again hurt the cause because of her unwillingness or inability to act and talk in a way that supported the WPI.
    ahimsa, Wayne, sandralee and 3 others like this.
  12. Firestormm

    Firestormm Guest

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    Thank you for posting the link. I have wondered at the source for some of these quotes one sees around the various forums etc. The full article is not particularly supportive of Mikovits though is it? She is seen to be inciting people into action with scare stories. Reminds me of that bill-board thing in Times Square was it? Sent a shiver through me - not for the reasons intended I am sure.
  13. Cort

    Cort Phoenix Rising Founder

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    Of course it's not valid grounds but people are human - they will react negatively when confronted with situations that really upset them. Dr. Mikovits said something so inflammatory that a CFS researcher, of all things, refused to have anything to do with a grant for the WPI. So they both made mistakes; the point is that Dr. Mikovits created a situation which made if more difficult for the WPI to get the grant they needed to investigate XMRV.

    If you think XMRV is it for CFS that was a big mistake and it meant that Dr. Mikovits took her eye off the ball; instead of acting in a way that helped the WPI get funds she reacted in a way that made it more dififcult for the WPI to be successful; that's why, despite all her efforts and all her work, I believe she ultimately hurt the cause she was workng for.

    The summary is coming :)
    busybee likes this.
  14. leela

    leela Slow But Hopeful

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    I havent read the article in full yet, but wow...the title seems a bit premature, or misleading, I dunno...
    "Mikovits Era Ends"--do you just mean for the WPI? It makes it sound like Judy M is now completely unplugged.

    I understand the socio-political pressures on Annette and the WPI, and an outspoken firebrand personality just does not go over well
    in that world, I get that. But writing off Judy and her work is more than a little like throwing the baby out with the bathwater.

    Especially because nobody really does know what went down.

    My grandfather was scapegoated as a journalist and unjustly "made an example of" over a misrepresented piece of minutia; the tribunals and legal proceedings just ground on and on for years until he just gave up. He was left with little money and a ruined (formerly celebrated) career, despite having received a medal of honor for outstanding courage in journalism. I'm not comparing the players here, I'm pointing out the dynamics and the systems that play out in the underlying context.

    The scientific/medical/social/financial system if rigged in favor of the 1%. The problems we are focusing on are not fixable until we respond
    collectively and provide an alternative to the patenting of organisms, for-profit health care, criminally organized drug research, development and distribution etc.
    The giant elephant in the room becomes invisible when we focus so exclusively on the smaller details of the picture.
    currer and Lily like this.
  15. Dreambirdie

    Dreambirdie work in progress

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    Yes, the TRUTH Is that nobody does really know what went down. Only Judy and Annette know ALL the reasons for the end of their professional relationship.

    As I have posted on another thread... I am grateful for the work the WPI and Judy Mikovitz have done on our behalf, though I am still a bit shocked at Annette Whittemore for firing Judy. I can understand that they have had some serious differences, but why couldn't those be worked out in mediation or even in a few therapy sessions with a really good facilitator?

    It's clear that being involved in "controversial" research is very stressful and that can reek havoc on people's emotions. Every one of us is just human after all, and humans tend to be a rather egotistical and self-righteous species. When things get heated, it's easy to overreact and resort to extremes measures, and firing the most devoted ME/CFS researcher we've ever had qualifies as such in my mind.

    My wish is that both Annette and Judy chill out, take some time to assess the situation from a calmer place, go back to the drawing board and figure out how to make things work. It probably won't happen, of course, but wouldn't it be great if people in the scientific community actually learned how to listen to each other and work out their issues from a broader perspective. Especially considering the consequences for all of us.
  16. OverTheHills

    OverTheHills

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    (my bolds)

    Cort, ever so politely, I think you are missing Citybugs point.
    It is not about whether you are right or wrong in your opinion about whether Dr Mikovits has been a constructive or destructive force. It is about whether your editorial is kind and helpful to many members of the forum who are feeling fragile and upset about recent developments, and who feel under attack from many directions.

    OTH
    mezombie and Lily like this.
  17. Cort

    Cort Phoenix Rising Founder

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    Got It OvertheHills...

    I have been thinking about these issues for a long time and its always been difficult and touchy to bring them to the fore. I strongly felt some things needed to be said- to be put out there to be considered; I understand, though, that it may feel like loading on after the bad news of the past few weeks.

    In the end I hope the editorial is helpful but I understand how you and others feel that now was not the time. (I guess you never know until you try :))

    I strongly feel that Dr. Mikovits departure is good news for the WPI because, as I said in the article that, I didn't see how they could move forward with such a controversial figure at the helm. In the long run I think it puts them in better shape and that's a good thing.
  18. leela

    leela Slow But Hopeful

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    Perhaps you could change the title of the editorial to something less inflammatory, that still reflects your support and confidence in the WPI.
    mezombie, currer, SOC and 4 others like this.
  19. liquid sky

    liquid sky Senior Member

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    I get it Cort. You do not like Judy and never have. We know very little about what has happened and we may never know the real truth. Only what the mainstream press and the powers that be decide to put out.

    I want my votes back from the WPI. That money was meant to fund Judy's work in the lab. That will not happen now.

    I will not throw WPI under the bus because I do not have the full story. I do not know what forces were brought to bear on Annette. I do know that the last video on miraculous cures from Annette alarmed me. There is no magic cure where you go from bed/wheelchair in 6 weeks. To me, that is a false hope bordering on fraud.

    This is a fight about power and money. For once, it would be nice to see the good guys win and by that I mean those who truly have the patients' welfare at heart. Why someone would make money off of poor, sick people is beyond me. All those that are using people with ME to make their living with no benefit to the patients need to stop and go get a real job. We can't support you any more.
    mezombie, Lily, currer and 1 other person like this.
  20. Tristen

    Tristen Senior Member

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    I've supported WPI in every way possible. I voted, got family and friends to vote in contests that awarded them money. I donated my own money. I promoted them with several local doctors and media. I still believe that Dr Judy and Annette have our best interests at heart, and I will continue to support them in any way possible. I have no ill will feelings towards any of them. It's just sad that it has come to this.

    But I'm not surprised at the undoing (for lack of a better word) of the organization. There have been plenty of signs that something was going very wrong at the WPI for over a year now. I'm a bit surprised by the magnitude of the changes, but not at all surprised that it has finally come down. Therefore, this article is not insensitive from my perspective. But I do understand that for those being caught completely off guard, it would be quite disillusioning and cause them to view the article as untimely.
    Wayne likes this.

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