1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Dr. Suzanne Vernon updated statement on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by mezombie, Dec 4, 2009.

  1. Marylib

    Marylib Senior Member

    Messages:
    428
    Likes:
    11
    New Zealand
    35,000 physicians trained? How do we make contact?

    The patient population should know who these physicians are. This is very important. Patients are always trying to find a doctor who can treat ME/CFS. It would be so helpful. Or do they need to keep this info "confidential" too?
     
  2. anne

    anne Guest

    I do wish the CAA would help with this, somehow. I understand the political reasons why they need to stay away from doctor recommendations, but there's got to be some way they can help patients find people who have some experience with this illness. It just breaks my heart how hard it is for everyone to even get diagnosed, much less treated. If they are training doctors--which would be just awesome--providing a list of doctors who have been trained would seem to be a way around some of the dangers of recommending doctors.And if they can't take this up, someone should. That co-cure list is not enough.
     
  3. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I agree, Anne,

    Maybe CAA could send a mailing (or emailing) to the doctors who took the course and ask them to voluntarily sign on to a list of trained doc.s. If the Doc.s opt in to the list, is that still a problem? I'm not familiar with your system.

    It would be great if people could see those doc.s!

    ETA And couldn't patients ask this of CAA?
     
  4. SeaShel

    SeaShel Senior Member

    Messages:
    111
    Likes:
    0
    AZ
    It seems awfully curious to me that the CAA is claiming 35000 docs have been trained, and yet so many of us can't find one that knows or cares to know about me/cfs. I don't know if that number is US only, or worldwide. If it's US only, that's 700 doctors per state!! (I know that's not statistically correct, because of course you aren't gonna have 700 from say, Rhode Island or Vermont).

    It just doesn't add up to me.

    And as has all ready been mentioned, why can't there be a list of who has taken the course? No recommendation, just a list.

    If someone has taken the course and doesn't want it to be known they have, isn't there a message in that?

    I just feel that if you're going to say you've had this incredible number of docs take a course that should be of benefit to us, it needs to be verifiable and tangible to us.
     
  5. Lily

    Lily *Believe*

    Messages:
    665
    Likes:
    4
    CFS training

    I read that they provided the education for the physicians, but can't remember reading whether they provided Continuing Medical Education units.....I would imagine they did (if they were up to jumping through all the hoops to do that). Having had some experience with this in a previous life, I know that allopathic/osteopathic physicians will take a course that offers CMEs just to get the CMEs. And taking the course doesn't necessarily mean that they will want to treat patients with CFS. I don't mean this in a derrogatory way at all. It's just is the way it is.

    I think it really is difficult for most physicians to treat patients when there are no established & accepted protocols for treatment. Insurance companies refuse to pay for treatment that is considered experimental (as we all know). There is increased legal risk (even though there shouldn't be), and sadly, the docs risk being judged by their peers if they let it be known that they believe CFS is actually a physical illness.

    Definitely, we cannot assume there are 35,000 physicians out there willing to use this knowledge.
     
  6. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    Dr Vernon's years at CDC

    I find it odd that she should be proud of having been associated with "CFS research" at the CDC for decades, when, in fact they haven't accomplished anything but obfuscation in all those years.

    And any suggestion that we should be grateful that she, or CAA, haven't promoted or funded any studies linking the illness to sexual abuse or other psychiatric causes is nauseating. Damning with faint praise, I would say.

    I am unable to feel gratitude to those who make a very good living off the suffering of me and people like me. I can understand how they wouldn't want to work themselves out of a job.

    I think Hilary Johnson is right on:

    "If you add up McCleary's and lobbyist Tom Sheridans salaries over the last twenty yearssay $100,000 each per annum, a generous underestimateyou get $4 million. Thats how these two profited off this disease, at a time when a million very sick people lost their incomes.

    What more can one say about this slick, overblown operation? It exists to keep McCleary, Sheridan and now Vernon, comfortably employed. What else it does that is actually helpful to you, I cannot say. "
     

See more popular forum discussions.

Share This Page