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No Major Research Hospitals interested in XMRV?!?!

Discussion in 'XMRV Testing, Treatment and Transmission' started by TheMoonIsBlue, Sep 24, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I guess this is a question and a statement both. In all the of the USA, with many major research hospitals, is there ANY one that is taking an active interest in XMRV or even knows what the heck is going on with XMRV and M.E./CFS? I have a major university research hospital in my state and several nationally acclaimed hospitals (for other illnesses) and what the heck............does anyone know what is going on?

    Are any infectious disease doctors/HIV doctors interested in this? If you call most of them and say you have CFS many will say "We do not treat that". Is that changing at all with XMRV? I wonder what would happen if I called a bunch of HIV doctors and said I am severely ill with CFS and need a consultation about XMRV and the recent discovery of retroviral infection in CFS? I wonder how long the pause would be on the other end of the line...............?

    Are any of them even willing to see M.E./CFS patients and help them order the test for XMRV?

    It has been almost one year since the paper was published in SCIENCE. Now we have the Lo/Alter paper.

    I'm not expecting a cure or even treatment over night. I did expect more to happen that what is happening......!

    Am I naive to think, atleast a couple research hospitals (or even one) would want to do a study on M.E./CFS patients and XMRV, retroviruses, immune dysfunction?

    Seriously............is WPI going to be our only hope for the next "X" number of years?

    ---Has anyone called, written, emailed doctors, hospitals, researchers, etc., to find out if they are even aware of XMRV?

    I know it is still early in the game, I'm not even talking about treatment for XMRV/MLV's.........but STUDIES.

    Where are the studies????? I thought there would be so many more.

    I'm just really frustrated right now. I'm sure you can tell!
     
  2. Rrrr

    Rrrr Senior Member

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    i have recently gone to two major hospitals in boston, Mass General Hospital and Brigham and Women's Hospital, and seen top doctors there in the infectious disease departments.

    they are following xmrv news, but the negative studies turned them off. they refuse to treat me with antiretrovirals.
     
  3. Rrrr

    Rrrr Senior Member

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    p.s. i think both hospitals i went to are doing a joint xmrv study. but i think the results may not be positive.
     
  4. acer2000

    acer2000 Senior Member

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    The ID doc I have seen at my local university hospital seems very interested. I think people are waiting to see if the disease association pans out.... I think its a catch 22, researchers want to know its "OK" to research (ie there is money behind it), and that won't happen until there is enough research. Doctors just do what they are told for the most part - when the research gets to a point that they know a treatment, they just implement it.
     
  5. xrayspex

    xrayspex Senior Member

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    u.s.a.
    I told my pc doc over the phone that found out am xmrv+ and the next week i received an article about FM study and success of doing CBT and exercise from him.....huh? disconnect there. he works for a major university hospital and is supposed to be one of the cfs friendly ones here......I dunno what to make of that. this univ has never been on the cutting edge of cfs thats fer sure, conservative. the one maverick helpful rheumie they had left finally cus of the political b.s.

    perhaps it was just innocent coincidence, well intentioned, but wow, talk about feeling very misread

    I also think its a bad sign, this pc guy is supposed to be cfs friendly, if he hasnt understood what i have been trying to say about oxygen hunger and pain attacks getting flared from physical stimuli and made the connection that means neuroimmune and even with the knowledge that xmrv+ thinks exercise and cbt might help......wow makes me think the news is NOT getting out, we are immersed in it at PR, but the general practitioners maybe not so much, unless its a denial back lash before acceptance sets in

    I suppose if amygdala retrain helped gupta hell maybe cbt will help me become a triathelete
    ya just never know right. Maybe I will start praying too
     
  6. Daffodil

    Daffodil Senior Member

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    we also have some major research hospitals here in toronto and as far as i know, nothing is being done. my doctor is a prominent ID doc and i always ask him if his colleagues are discussing XMRV/MLV and he says "not really"
     
  7. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    Hey thanks for the replies.

    I've been feeling really bad the last 4-5 days (CFS+Premenstrual=Nightmare!) and I'm just very frustrated and concerned that the XMRV news simply has not gotten out, or that "mainstream" medicine simply doesn't care. Is it not interesting?

    I am VERY fortunate to have a wonderful, caring PCP, who knew all about the SCIENCE study when it came out and he broached the subject before I had a chance to..... he wants to help me and I try and keep in touch about research.......but seriously if the news isn't getting out to Infectious Disease doctors, esp. ones who treat HIV and specialize in retroviruses, how long it is going to be before the majority of ME/CFS patients can get real help?

    Most ID docs don't or won't see people with CFS. If you say "EBV" you may get in. We have to jump through hoops to get Immune System testing that I think the savvy ID docs should know about and be willing to help us.

    I once had an ID doctor say to me "Other than fatigue, what would you like to fix most?"!!!!!!!!!! Um, HELLO. He was primarily an HIV doctor. Most of his patients are probably in better shape than me.

    The major university research hospital close to me to my knowledge isn't atleast ME/CFS "Un-Friendly" based on what's on the website......but I've never seen a specialist there for CFS.

    Based on what the past attitutes of prestigious hospitals such as the Mayo Clinic and the Cleveland Clinic.......Antidepressants, exercise, and therapy and no immune testing.......what will it take for them, and everyone, to accept that CFS is an immune system disorder atleast?

    I'm sorry for ranting!

    P.S. Should I print out the Science and PNAS study and just start mailing it to hospitals and doctors? Is this a stupid idea?
     
  8. eric_s

    eric_s Senior Member

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    More positive published papers, i guess. We have more positive studies now, since the XMRV workshop (most of them are not published yet, though) and hopefully more will come. If Dr. Lipkin will confirm the XMRV/CFS connection, i think that might help a lot.
    And the cessation of negative papers.
     
  9. aiden424

    aiden424

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    I am really frustrated too how long everything takes. I am so tired of being so sick for so long!! I want at least part of my life back before I'm to old to enjoy it.

    Kathy
     
  10. eric_s

    eric_s Senior Member

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    I think there should be a lot of new information out in the next couple of months (4 months or so).

    Lipkin, the blood working group, Alter, Bateman/Singh and we don't know what the WPI is up to (at least i haven't heard anything about what their next goal is).

    I don't worry about that, i just hope it will be results that benefit us as much as possible. Meaning that it will move things forward.
     
  11. jimbob

    jimbob ME/CFS84-XMRV+

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    myrtle beach, s.c.
    P.S. Should I print out the Science and PNAS study and just start mailing it to hospitals and doctors? Is this a stupid idea? No such thing as a stupid idea, Im posting warnings on craigslist for god's sake! Any effort to get the word out is appreciated, Thanks moon
     
  12. Timaca

    Timaca Senior Member

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    Dr. Montoya, an Infectious Diseases doctor at Stanford is interested in infection associated CFS and is doing research in this area. XMRV is one of the pathogens being studied.

    Best, Timaca
     
  13. Jemal

    Jemal Senior Member

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    The hospital doctors I have met so far haven't heard of XMRV. They seem interested when I tell them about the virus and I even gave one the Science paper. Unfortunately it looks like we need more studies, before doctors will try and treat us. There's still too much discussion if the virus actually exists and then we have to go through the discussion if the virus causes disease. And then they can start researching treatments. It's taking too long :(
     
  14. Rrrr

    Rrrr Senior Member

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    i would not print out the science and alter/lo papers. i'd find the names and emails of ID docs all over the country, hospital by hospital, and email it to them with links to the articles.

    i think this is a brilliant idea and very very good advocacy.

    they say it takes someone hearing something 3 times before it sticks in their minds.

    so if you can introduce them to this info first, and then they hear it 2 more times elsewhere, we win!
     
  15. illsince1977

    illsince1977 A shadow of my former self

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    It is one of the pathogens Montoya is studying? Where did you read that?
     
  16. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I've been looking into emailing ID doctors but most of them do not have an email address listed. I found only found one so far. I did email them the links to both papers. Who knows if they will even open an email from an unknown person. Still I will email more docs if I can locate email addresses. They have their office addresses listed which is why I thought maybe mailing a few copies wouldn't be a bad idea. Or mail it to the Infectious Disease department in general.
    Maybe it'll get thrown in the trash, maybe not. A wasted stamp is nothing to me.
     
  17. Daffodil

    Daffodil Senior Member

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    i also had the idea of mailing the article to every doctor i could find...but i want to be sure about things first. i was adamant yrs ago that HHV6a and Valcyte was "it" and told a bunch of doctors that. they probably think i am crazy now.

    a doctor told me they usually read only publications from health authorities such as Health Canada, which they have to read.
     
  18. Timaca

    Timaca Senior Member

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    Susan~ It was in the information distributed to participants in the research study.
    Best, Timaca
     
  19. glenp

    glenp "and this too shall pass"

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    I found that i got more response emailing the researchers at the university. Many ID doctors in practise are not interested in research, their practises are established and they have a full plate. There are ones at the university that are interested and I have kept in touch. It does help!!! Go for it!!! Get them interested!!

    glen
     
  20. illsince1977

    illsince1977 A shadow of my former self

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    Timaca, were you in Montoya study?

    Daffodil- Personally, I'm going to wait on recruiting docs via email until there is more published research that explains away the negative papers indisputably.
     

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