Saturday, November 13, 2010

Search for an I.D. doctor

Recently, the Patient Advocate has begun an effort to find an Infectious Disease doctor in the Twin Cities - someone who will take an interest in his daughter’s case. The Patient Advocate has systematically and slowly searched out and emailed 50 I.D. doctors in the Twin Cities. Each doctor gets a letter explaining the particulars of the PA's daughter's illness and a request for help and suggestions. The PA has received ten responses, some with very general advice that indicates that the recipient did not read the email very carefully. None of the responses made a specific suggestion. The Patient Advocate has no illusions here. This is not going to be easy. This might take some time. 

In the meantime the PA is going to learn the names of every I.D. doctor in the Twin Cities. Each one of these doctors is going to get the report of the HHS XMRV blood working group as soon as it is published, along with every other significant piece of information that emerges in this unfolding drama. It might take a few more years in order to get a doctor for my daughter.

This effort to find a compliant I.D. doctor conforms to the aspirations of the Whittemore Peterson Institute. The WPI is looking for or searching out I.D. doctors with whom to work. The WPI already has reached out to make a connection to Dr. Brewer, an infectious disease doctor in Kansas City, Dr. Montoya at Stanford, Dr. Burrascano in NY and Dr. Conant - all who have expressed interest or partial interest in collaborations.

Patients all over the country are looking for doctors who might be open-minded about the ME/CFS- XMRV connection. Patients and advocates ask what can they do to help? One specific thing that they can do is to try to find doctors who are willing to take on XMRV-related patients. In the Patient Advocate opinion HIV doctors are the best bet.


5 comments:

  1. Well said! I wish you were my father. I have to do my own advocacy and it costs a lot of energy. I explicetly asked for the heads of two physicians in Holland and Belgium... heads on a chopping block of course.
    Being in a lull at the moment makes it harder to find the right physician. I should probably also take Conant's advice, but I refuse to be treated like some mental retard. I actually think I could be your daughter if I read this ;-). In two years from now it wil be chop chop!!!

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  2. I love love Dr. Brewer he's awesome!

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  3. Thanks for all you do.
    I have no advocate,
    so in my mind you are my advocate, too.

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  4. I've found two XMRV-awares "near" me: a private Lyme doc who fleeced me, and a regular ID who'd attended a national conference, but opined, until we know more... and being in a hospital setting, really couldn't say/do much more.

    Last I checked Burrascano's retired - largely because he stood up for his patients in front of 'late Sen. Kennedy and Steere; and we know who won. As you know, his heart's still in the right place. Unfortunately some in ILADS and Lyme groups who associate themselves with his patient literature, product endorsements, or image are real doozies. I'd welcome his collaboration, but he wouldn't be my first pick for WPI medical director. Just MHO.

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  5. I'm told Dr. Richard Bryant, OHSU infectious diseases clinic, knows about ME(/CFS). I'm also told the Providence St. Vincent's infectious disease clinic knows about it. Both in Portland, Oregon. I have not yet fully verified this, but I do think the info is worth passing along to your contacts.
    Not ID, but they also say Dr. Kip Kemple (rheumatologist) and the Providence Portland Arthritis Clinic rheumatologists also know about it. Kemple gets good reviews from the local ME community, and he is the one who recommended Byrant.

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