Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Important more news and information from the WPI

Discussion in 'XMRV Research and Replication Studies' started by Gerwyn, Mar 30, 2010.

  1. Gerwyn

    Gerwyn Guest

    When I posted my review of the science paper last week I thought that the science paper stated that all patients fitted the Canadian criterea.I have just recieved an e mail from Dr Mikovits confirming that ALL the patients conformed to the Canadian criterea and clearly a completely different patient cohort to
    that selected by the European studies.Dr M got back to me in less than 24 hours.I am suprised that other people did not take this very simple step.

    Dear Gerwyn
    All of the patients satisfy the CCC criteria
    We are doing the trial according to location, central London fist..such a great demand we needed to break it up but everyone will be included

    Best wishes
    Judy
    - Show quoted text -


    On Tue, Mar 30, 2010 at 3:38 AM,







    -
    Judy A Mikovits, PhD
    Research Director
    Whittemore Peterson Institute
    Applied Research Facility Rm 401/MS199
    1664 North Virginia St
    University of Nevada, Reno
    Reno NV 89557
     
  2. Gerwyn

    Gerwyn Guest

    More New News From the WPI


    When I posted my review of the science paper last week I thought that the science paper stated that all patients fitted the Canadian criterea.I have just recieved an e mail from Dr Mikovits confirming that ALL the patients conformed to the Canadian criterea and clearly a completely different patient cohort to
    that selected by the European studies.Dr M got back to me in less than 24 hours.I am suprised that other people did not take this very simple step.

    Dear Gerwyn
    All of the patients satisfy the CCC criteria
    We are doing the trial according to location, central London fist..such a great demand we needed to break it up but everyone will be included

    Best wishes
    Judy
    - Show quoted text -


    On Tue, Mar 30, 2010 at 3:38 AM,







    -
    Judy A Mikovits, PhD
    Research Director
    Whittemore Peterson Institute
    Applied Research Facility Rm 401/MS199
    1664 North Virginia St
    University of Nevada, Reno
    Reno NV 89557
     
  3. Min

    Min Guest

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    Thank you

    The UK studies looked at people with vaguely defined fatigue.
     
  4. Bob

    Bob

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    Thanks Gerwyn,
    That's something that I've never been able to clarify for myself (or maybe I did, but I'm having a brain-fog day!)
    Do we have any indication of how the patients in the UK WPI study will be diagnosed?
    Bob
     
  5. ukxmrv

    ukxmrv Senior Member

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    Some of us stopped sending questions to Dr Mikovits when she became submerged with requests to join the UK XMRV study. We needed to give her time to get it all sorted out.

    I've also had communications with her and had questions answered. She's been very good at doing that.
     
  6. Gerwyn

    Gerwyn Guest

     
  7. Gerwyn

    Gerwyn Guest

    makes you wonder why others didnt ask her things does it not
     
  8. Hope123

    Hope123 Senior Member

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    Actually, Gerwyn, my take is that she selectively chooses who she answers to (and that is fine and expected given how busy she is) and you have been chosen! :Retro wink:

    I've written her before and I don't get any answers back. No offense on my part though. I suspect others have written her as well and don't get a response back so it's not as simple as just writing her.

    I think that WPI keeps tabs on this forum -- in fact, they link to this forum more and more on their Facebook page. Since you have a bit of a rep here, she might have chosen to answer your e-mail.
     
  9. ukxmrv

    ukxmrv Senior Member

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    I'm really sorry to hear that Hope.

    Took a long time to get my first questions answered and in the end I had to ring the WPI and talk to someone there. Since then she was been great.

    It seems like every day UK patients send me snippetts of things she has written to them. I think that she gets overwhelmed by mail sometimes.

    I'm glad you are not offended but it is frustrating.
     
  10. Cort

    Cort Phoenix Rising Founder

    Yes it says right here. Honestly I thought it was either CDC 'or' CCC.

    Again those are the types of patients those doctors are seeing anyway. Would Sara Myhill sent the WPI a bunch of psych cases? Neither would the doctors the WPI was associating with. They all identify CFS with post-exertional malaise and they have for years. If you have PEM then you're probably going to fit the CCC.

    I'm glad it was 'and' though :)
     
  11. Hope123

    Hope123 Senior Member

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    It's par for the course. Sometimes, I write various researchers with questions/ comments after reading their papers. I'd say I have about a 70% response rate - some are suprisingly helpful. I write with the thought there will be no response so what I get, I'm happy with. When I was working and writing people with my professional affiliations intact, it was about the same response rate so I chalk it up to individual person interest/ time.

    The general WPI folks have answered my mail occasionally though.
     
  12. Knackered

    Knackered Guest

    This is encouraging, thanks Gerwyn.

    I keep kidding myself with doubt thinking, "I can't have it, how could i have caught it?"

    But then I look though the Canadian criteria and I match it almost perfectly, I read posts like yours and it seems like everything fits. I can't wait to get tested.
     
  13. usedtobeperkytina

    usedtobeperkytina Senior Member

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    HOpe, I didn't get an answer either. But that has been par for the course for me in a lot of my attempts to communicate lately. Beginning to wonder if it is me.

    Tina
     
  14. starryeyes

    starryeyes Senior Member

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    I'm amazed Dr. Judy personally gets back to any of us actually. She seems superhuman to me.

    Thanks for posting that Gerwyn. It's very encouraging.
     
  15. Mark

    Mark Former CEO

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    The last scintillas of doubt are riding out of town...

    Hi Tina, your analysis of how the cancer question came about went wrong was awesome, doesn't seem to be much wrong with your communication skills that I can detect. Took me back to our exploration of the Defreitas non-conspiracy. Happy days...

    So anyway: scarcely any room I can see for doubt that CCC+Fukuda+severe disability = XMRV

    What about the rest of us? Any doubt that the rest of us have XMRV too? Since the 3.7% of general population figure is likely to be roughly right too, it would seem highly likely XMRV covers most of the rest as well, but unlike the results for CCC+severe disability, that's not yet proven beyond all reasonable doubt. They did reassure that they are confident this will hold up for most CFS patients, so I guess by that they mean any of the valid criteria. I'm really curious about how much further than that it goes though. My guess remains: a very long way.

    Still waiting for the merest hint over what XMRV might mean for IBS, MS, MCS and ETC. Shame nobody took my advice to quickly send 10 properly-collected samples each from all major ideopathic conditions to the WPI. It is still the most rational next step so a real shame that still no authority has had the sense to even suggest that. Not in the least suprising to me though. My proposal is simply too logical and requires parallel reasoning rather than dull sequential plodding. It's no way to save money or lives.

    Keeps the focus on the most neglected and under-prioritised patient group in modern history though, and makes sure everyone will all remember where the breakthrough came from, so the likelihood that the paradigm-boggling nature of their condition translates into an epic shift in scientifc understanding means that when humanity realises that it has been cutting off its own nose to spite its face, that might just force us all to realise that when you leave a single one behind, you leave all behind. "Researchers are put off from specialising in CFS research because it seems so resistant to our efforts to solve it". PAH! All those billions on cancer research (and how has that been going? That's proving much easier to figure out, right?), and in the end, inevitably, the answers come from somewhere else. You couldn't make it up...
     
  16. Mark

    Mark Former CEO

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    Too right teejkay. I wonder what she does in her spare time...

    Who does not have to prioritise which emails they have time to reply to? I bet that's one monster overflowing Inbox, and it's only going to get worse...

    We're OK here though, if Gerwyn has a direct line. Looks like he too is going to be rather more in demand this year than last!
     
  17. Bob

    Bob

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    Yes Cort, that's exactly the issue that I had trouble clarifying for myself!
    I'm glad that they've cleared up the ambiguity now.
     
  18. Adam

    Adam

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    I wonder if this figure is on the high side Mark? This is not casting doubt on WPI's finding (I CLAIM TO BE NUMBER 1 FAN NUMBER 1 FAN NUMBER 1 FAN NUMBER 1 FAN) as i believe Judy M herself has said larger studies need to be done to gain a clearer picture of incidence.

    I think the sample number for healthy controls in the WPI study was around the 200 mark? Or was it 100? Anyway, the Abbott Diagnostics guy at the CROI conference back in February in San Francisco, said they had only found 1 case of XMRV in their 900 or so healthy controls. These were blood donors I believe. I think it was John Coffin who asked the Abbotts guy if they had tested a 'broader population' , which would include less healthy people, more typical perhaps of the general population. He replied that they had begun this and it was too early to say for sure but that he expected a similarly low number (certainly far less than 1%).

    And also the Japanese study have a figure well below 4% and this was from an ven smaller control group.

    I find the rate of incidence interesting because if you went with say 4% of general population with say 0.5% of people sick with XMRV it would mean only 1 in 8 people with the virus had gone on (at that point in time) to be symptomatic of CFS/ME. And many members on here have conjectured that the 1 in 8 figure suggests that a trigger is required to activate XMRV. Is there a trigger for HIV - I didn't think there was?

    All of the Macque monkeys infected with XMRV had developed XMRV and in similar tissue/organs. One might assume therefore that all of the poor little beggars would have gone on to develop CFS?

    Someone with a btter grasp please comment on my less than well thought out/expressed comments please?

    yours scientifically challenged

    Adam
     
  19. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Yes, Mark, this is another reason a movie should be made. What a fascinating drama that the "problem child" patients in the research community ends up providing solutions to so many other children. The irony is rich.

    And thanks for the comment. Except, I don't even remember what post you are referring to. {rolling eyes but I don't see where the little emoticons are}

    Now, Adam, I actually think the 3.7% figure is low. Remember, at the time of publication, they were using methods that only showed 67% positive in CFS patients. Later, they found 98% after doing other types of tests. How many in the healthy controls would show positive if they did the same tests they did after the publication? Maybe they did. But I haven't heard any release of those figures.

    I suspect 10% of healthy controls have it. Here is my reasoning....
    This virus goes dormant and is hard to find in CFS patients.
    If a person is not showing disease symptoms, then isn't it likely it would be even harder to find in them, since the virus is not as active?

    Osler's Web shows that unusual cancers increased in relatives of people with CFS. Remember the woman from South Africa who visited relatives in US, four different locations, some got CFS and some got lymphoma.

    The virus may not manifest itself in the same way in every person, especially given the fact it goes dormant at times, unlike HIV, which also can be manifested in different ways, depending on co-infections that person has.

    Here are some possibilities I am thinking of:

    MS
    Autism
    Gulf War Syndrome
    Depression (not real depression, those diagnosed with depression who actually have CFS)
    bi-polar disorder
    all sorts of cancer including prostate, breast, lymphoma, etc.

    Isn't this exciting.

    Tina
     
  20. Bob

    Bob

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    Hi Tina,
    This is exactly what I've been thinking!
    See my post here:
    http://www.forums.aboutmecfs.org/sh...o-be-undertaken.&p=62923&viewfull=1#post62923

    Bob
     

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