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Campaign to have Mikovits speak at the XMRV conference!!!

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

  1. V99

    V99 *****

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    This has been posted on the European Society for ME website.http://www.facebook.com/pages/ESME-European-Society-for-ME/326113349124

    http://networkedblogs.com/67q6T
    This is very important, they are sidelining Mikovits and the WPI. We cannot win this battle if they are dropped now or ever. Do not let them do this. Remember this is nothing to do with Frank Ruscetti, who at the current time is presenting the talk on CFS at the conference. His acumen, honesty, integrity, loyalty is not in question. This is about have the right person doing the talk. Mikovits will be there at the conference, having her not talk is a deliberate attempt to rid themselves of the WPI.

    Thank you
  2. Esther12

    Esther12 Senior Member

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    Hi V99. I just replied to the other thread after seeing you mention this elsewhere, and though my reply would be relevent here too:

    "Ruscetti is pretty clearly linked with the WPI though, and Mikovits wasn't a CFS expert 12 months ago (as she herself said).

    If they're focusing on the virology, Ruscetti is a really respected voice to have on side. It's not like they invited Wessely.

    I think we should be pleased to have such a big dog speaking about CFS and starting to make himself more expert on it.

    I've only skimmed this thread, so could be missing something, but I don't think there's anything to be upset about here. Personally, Ruscetti would be my first choice for speaking at a conference to other virologist. What he says will be seen as important and won't let people hide behind their problems with the WPI or Mikovits. From what I've seen of the way the two talk of each other, there's no way Ruscetti is trying to screw over Mikovits."

    If it turns out that there's a strong link between CFS and XMRV I don't think they'll be able to side-line Mikovits or the WPI. I also don't think Ruscetti would be willing to help them do so. I'm not sure there's any need for a campaign about this yet.
  3. V99

    V99 *****

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    Mikovits is the only scientist capable of talking at length on the CFS XMRV association. Ruscetti is new to CFS, Mikovits has been looking at CFS for a few years now. This has nothing to do with Ruscetti, they are trying to push Mikovits and the WPI out. How can we win this war if they are sidelined now or ever? Again, I repeat, there ARE trying to push Mikovits and the WPI out of the research field.
  4. Wasbeer

    Wasbeer

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    Hello V99

    What makes you so sure about that? I read you are saying and repeating it, but can you tell me HOW you reached this conclusion? I think Esther 12 is giving some strong reasons to look at it in another way, but you remain unconvinced. My questions: Who are 'They'? Why would they want to push Mikovits and WPI out? And if so: what is your evidence that 'they' are actually doing that?

    You make it sound like some sort conspiracy, and I'm not saying that there isn't one, I would like to be able to evaluate this theory on facts and sources. I mean no harm and I hope my English is good enough to come across.

    All the best,
    Eelco
  5. V99

    V99 *****

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    'They' are scientist who do not like the attention and prestige the WPI and Mikovits are getting. There is evidence, but you will just have to take my word for it. I don't blame anyone for questioning this, but it is happening. Why else would Mikoviits be there, are not be presenting on CFS.

    You English is no problem, really good in fact.
  6. Wasbeer

    Wasbeer

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    Okay, thanks for your answers V99, I've just read the other thread and I don't think it's productive to repeat that discussion overhere. From what I've read so far I don't think it's wise or productive for our community to start campaigning for this, but that's my point of view. Everyone can judge for themselves.

    Bye!

    (and thanks for the compliment)
  7. V99

    V99 *****

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    So not having Mikovits speak is ok?
  8. V99

    V99 *****

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    Just to b clear, this is not about posting as many places as I can. I am not associated in any way with the campaign I have posted here. I do however support the effort.
  9. muffin

    muffin Senior Member

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    I too STRONLY support this issue and suggest that others fight it as well

    Dr. Mikovits should have been the key-note speaker for this conference. I just assumed she would be given that she is the true expert in XMRV. I know there are others who are well informed in XMRV, but let's face it, it is Mikovits that really knows this stuff and how to find it.

    And I do believe that someone, somehow got to these conference people and made sure that Mikovits was not on the speakers roster but instead, on some "no value" committee. This was deliberate and meant to keep XMRV, CFIDS, WPI out of the spotlight. And also, where the heck are the reps from FDA and NIH? Didn't they do studies on XMRV as well? Further, why is Switzer from the CDC, of the failed - "we did not find XMRV study" - on this speakers roster? Again, his place was to damage XMRV research. Since the CDC did not find XMRV using their assays, why then is HE speaking on this topic? Why not Mikovits, the person who developed painstakingly the current protocols to find this virus?
    Yet again, the government health organizations have gotten into this area and are trying to damage XMRV research and credibility. This is a waste of a conference and one that will damage and discredit XMRV and further Retrovirus research. And that's what they are trying to do. Pure and simple. Look at the line up.

    I ran a 800 person conference with people coming from all over the world. We made sure that we went to the very highest levels of authority, power, knowledge to get the key note speaker. From the very top, when they would come back with a no, we then moved sideways or downwards to the next person with the throw weight until we got the very best we could. The key note speaker is the authority, anyone less suggests that the organization running the conference has no real credibility OR they do not want a first class key note speaker -- odd, but for whatever reasons.

    This is not a case of over-reacting or hysteria as some have suggested. This is yet another attempt to damage XMRV and Retrovirus research and credibility. No X-files thinking here, but come on, you bring in the best not the ones that can't or didn't or won't - llike Switzer. This is some sort of placating game. Hey, we did a conference and nothing of value came of it. And another blow to XMRV/Retrovirus research is given.

    So, I have made it a point to email DHHS, NIH, the conference people as well as the media on this one. I hate it but the fact is that we have to fight on every single front on every single issue no matter how "small" some of us may think it is. In this case, I do NOT think this is a small issue. Rather, another nail in the coffin for more research and so I have been aggressive (not nasty, but forthcoming) in my emails.

    The problem with CFIDS is that we did not have the media interest and public viewing of the disease or the retrovirus(es) that were/have been discovered. Part of this was our own fault for not fighting and instead being too timid and intimidated. That can NOT continue. We can not go another 30 years with the CDC and other health orgs (here, in the UK, Canada, etc) covering up CFIDS/XMRV/Retroviruses. The numbers of carriers and sick are just too large now. What will happen in the next 30 years to all those carriers and sick? The numbers will be astonomical. More young children will be sick and their lives lost to a virus that should have been dealt with back in the mid 1980s.

    I have no intentions of just laying here and letting this cover-up continue. I will be damned before I watch my own niece and nephew walk the same road that both my father and I have walked. With my family there is a strong "genetic" component to CFIDS and FM - and Connective Tissue Disorder (and POTS). So for these little guys I fight. And I will keep fighting every time "they" play games with us. No more. It's war on every level and on every front. It is that serious now. And NOW more than ever.
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    First off, do you know she wants to speak here. Has anyone asked her? Secondly, she is involved. Thirdly, this conference is for researchers, not the patients. If a stand is to be taken to push for a speaker, it is them (other researchers) that must make a stand. We won't be there to listen, so it shouldn't matter who we want to speak. Also, it is common in conferences, from what I understand, for researchers to give their opinions in their speech, even if others disagree. I learned this from reading Osler's Web. So, they may have some with one theory and have others with opposite theories.

    If I was one of the researchers in attendance, I would just not attend Switzer's presentation. (maybe a good case of "fatigue") Otherwise, I see no problem with the conference. It seems those who are honestly researching XMRV are fairly represented.

    Tina
  11. V99

    V99 *****

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    XMRV, not CFS

    I can guarantee Mikovits wants to speak, and is not being allowed to. Ruscetti is doing the presentation because of this.

    Please contact the WPI and ask.
  12. SOC

    SOC Moderator and Senior Member

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    I think Dr M is wonderful; she's at the top of my Hero of the Year list. But Dr FR has, at this time greater influence and credibility in the scientific world. This is a conference about XMRV, not ME/CFS. It's for scientific researchers. ME/CFS will gain more credibility in research circles if the information is presented by an long-time researcher they all know and respect. Dr M, by reason of her connection to an organization specifically created to find answers to questions about neuro-immune diseases, could be perceived as biased.

    No, it's not fair. But it happens all the time. If the conference wants to make the most of the Lombardi et al research among research scientists, Dr FR is not a surprising choice.

    Young researchers are PO'd about this every day. They do all the work and the person with the most street cred in the field gets to present it. It sucks. It's unfair. It's life.
  13. V99

    V99 *****

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    Mikovits is not a young or inexperienced researcher. The presentation in question is about CFS, not just XMRV.

    Read again what you just posted, you are very close to the truth. And please contact the WPI.
  14. floydguy

    floydguy Senior Member

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    It's important to pick your battles. I am not sure this is a battle that can be won. Or if it is won it could be a Pyhrric Victory - isolating CFS from the serious/big name researchers.
  15. V99

    V99 *****

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    If the WPI are removed from the XMRV question, where will that put us?
  16. Cort

    Cort Phoenix Rising Founder

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    (I popped this in from another thread). I think we should ask Judy first. One would think she would be asked to speak, that's for sure. Some snubbing may be going on.

    On the other hand if they're going to have someone speak on CFS much better to have Dr. Ruscetti, with his 240 publications and renown in the field, to do it than Judy Mikovits with her 40 or 50 or so; they will listen much more closely to him. It's not as easy to dismiss something coming from him as from Judy or most other researchers. I would think he is probably the most distinguished researcher to ever speak for us. Glad to see him on the agenda. ​
  17. SOC

    SOC Moderator and Senior Member

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    Yes, I know what I posted. It's unfair. It's also the way things work. It's not a slap to ME/CFS research.

    Dr M is not young and inexperienced, but Dr FR is older and more experienced in the field in general. I"m not saying it's fair, I'm just saying this is not a question of personally fair to Dr M. It's a question of presenting the material to that particular audience in a way that makes it best received by that audience.

    I still prefer to take the position that Dr FR presenting will open more doors for us in the retrovirology community in general, which can only be good for us.

    I don't see this as potentially destructive to ME/CFS research, or our credibility as a patient population.

    Yes, it sucks. Yes, it's unfair to Dr M, who has done so much for us. It's also the way this kind of information exchange works and there are good (if unfair) reasons that it works that way.
  18. V99

    V99 *****

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    So if they push the WPI out of XMRV research, you will be ok with that?
  19. SOC

    SOC Moderator and Senior Member

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    I'm not expecting it to happen.
  20. Esther12

    Esther12 Senior Member

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    If the WPI and Mikovits are now so unpopular that scientific conferences are trying to stop them speaking, maybe it would be a good idea to have Ruscetti step up and speak for them for a bit.

    If the CFS/XMRV link gets confirmed the WPI and Mikovits are going to be pretty totally vindicated, and no-one will be able to dismiss their role in findgin the link. While things are more tenuous, maybe it would be better to have a more cautious spokes-person? Mikovits and the WPI can communicate in a way some scientists find off-putting, so maybe it's best to have Ruscetti give the talk instead?

    I'm not at all sure about any of this. Maybe Mikovits would be much better? Maybe Ruscetti will say what Mikovits would like to, but because of his reputation it will be that much more persuasive to the other researchers at the conference?

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