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If You Could See Any Clinician In the World Today, Who Would You Pick?

Discussion in 'ME/CFS Doctors' started by Sing, Sep 28, 2010.

  1. Sing

    Sing Senior Member

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    If money and travel were not objects, or in your way, which doctor would you most want to see and work with? Boule de feu suggested this as a thread and I think it is a great idea. Please explain why you would pick whomever you pick.

    I'd pick Dr. Cheney, I think. He has been dedicated for so long, is so smart and willing to change his mind and try new approaches when the evidence is pointing that way. I love that he was a physicist, not just that it implies that he is smart but also that it shows he can think and approach things systemically instead of just linearly. We have a systemic disorder whether or not it was caused by one agent, probably a Human Gamma Retrovirus, though it may have been more likely caused by at least that one agent plus a predisposition. (I don't know, but this seems like an educated guess.) The results however are a multi-systemic illness, from top to bottom. He is a brainy intellectual and an old fashioned patient-oriented doctor, tailoring his treatment recommendations to his individual patients, isn't that so? Am I romanticising or on track?

    Any others want to respond, either about my thoughts on Cheney or above all, your pick for a doctor?

    Sing
     
  2. Min

    Min Senior Member

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    Dr Peterson please - could someone kindly post him to me? I'll send them a UK weasel or two in return.
     
  3. Enid

    Enid Senior Member

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    Komaroff because he knows the extent of possible organ damage involved.
     
  4. garcia

    garcia Aristocrat Extraordinaire

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    I think that is more than a fair deal.
    p.s. does anyone want to buy London Bridge off me? ;)
     
  5. paddygirl

    paddygirl Senior Member

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    Klimas is a brilliant communicator, I was watching her on the free 'expert' videos on cfsknowledgecenter and she is a natural media person, pretty sure she is an excellent doctor too. I went to my rheum recently with the PNAS and WPI announcements and he said 'don't believe everything you read in womans magazines' . I wish Dr Klimas was sitting next to me, she could have given him her 'santa claus' talk. Hey its REAL, not Santa Claus.

    What i would really really like is a little gadget I saw on Star Trek. The doctor (the Scottish one?) put this little probe in the patients ear, and bingo a correct diagnosis, just like that. Meanwhile I'm stuck with the attitudes and beliefs in this country, not as bad as the UK, but doctors here think the BMJ is the Holy Grail of medicine.

    Paddy
     
  6. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    I would pick my CFS doctor and the other doctor that works with her to both help me in different ways, Dr. Dzugan. They are my doctors and I couldn't pick anyone better!
     
  7. Sing

    Sing Senior Member

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    Hey, that is nice to hear that you like your own doctors best, Sally (is it okay to shorten your name to Sally?).

    You guys are all very interesting. No two people want the same doctor. As for the denying doctors who say things like 'don't believe everything you read in womans magazines', one day we will go on a shooting party for these dinosaurs.
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Of course, Sally is fine! Yes, dinosaurs indeed. They really need to join most of the rest of the world and understand what CFS (and POTS) is, good grief.
     
  9. CBS

    CBS Senior Member

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    Maybe one of us could see Dr. House and then we would all have an answer by the end of this upcoming season.

    Seriously, I think I'd base my choice on what ever symptoms/issues were the most prominent for me and perhaps the course my disease had taken.

    Cardiovascular issues - Dr. Lerner,
    Infectious issues/onset - Dr. Montoya
    Fibro pain and/or gradual onset - Dr. Bateman
    Overall immune response - Dr. Klimas
    Someone who could see you this year - Kogelnik or anyone in the Miami Clinic.
     
  10. Sing

    Sing Senior Member

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    That is really helpful, CBS. I am spacing out on Dr. Lerner for cardiovascular issues. Why him and not Cheney? What does Dr. Lerner do?
     
  11. CBS

    CBS Senior Member

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    Here's a link to a page on Dr. Lerner's CFS Foundation site: http://www.treatmentcenterforcfs.com/personal_statement/index.html.

    He's published on using valacyclovir to treat EBV in CFS patients and the accompanying cardiovascular anomalies: http://www.ncbi.nlm.nih.gov/pubmed/18019402

    My larger point is that we aren't a very homogeneous patient community (at least not in terms of course or expression) and that until we have a unifying etiology we may find that the question of the best doctor might begin with asking "for which patient?"
     
  12. bakercape

    bakercape Senior Member

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    I'd pick

    Dr. Klimas
    Her Immune system knowledge is so impressive and she has so much experience with immune modulators and antiviral drugs. Plus I just think she would be cool to talk to.
     
  13. CBS

    CBS Senior Member

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    I know this has been posted before but I think it is worth a second mention - the Expert Assistance series of videos with Dr. Klimas is fantastic: http://cfsknowledgecenter.com/expert-assistance.php
     
  14. Cloud

    Cloud Guest

    I spent some time researching who I thought would be best for me....I chose Dr Peterson for these reasons: He has been involved since the start of CFS, he has followed the most PWC's over the most years, he is not afraid to try new things, he is an amazing diagnostician and yet has a great bedside manner and, he has a lot of integrity which is evidenced by how he has stood up to tremendous opposition, to help our community for over 2 decades. He is also the closest to where I live (except for maybe Jay Levy), but that wouldn't have tilted my decision...it's just a plus.
     
  15. leela

    leela Slow But Hopeful

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    CBS,
    Thanks for my one, hearty, out-loud laff-fest of the day!! (Still laughing!)
     
  16. sensing progress

    sensing progress Senior Member

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    CBS, can you elaborate a bit on Dr. Bateman? You mention gradual onset specifically. Does she treat more people with gradual onset than acute onset?
     
  17. sensing progress

    sensing progress Senior Member

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    I agree with CBS and would consider what my most prominent symptoms(s) were and disease course and go with the ME/CFS doc with the most experience in that area. For example, if I knew my problem was primarily autonomic/OI issues (POTS, NMH, etc), I might choose Dr. Peter Rowe at Johns Hopkins. If it was to see someone with a vast experience trying a lot of different treatments, I might pick Dr. Lapp at Hunter-Hopkins Center in NC. If I had a relatively recent acute viral onset, perhaps Dr. Montoya, etc. As it was I chose Dr. Klimas via her new clinic as it had the shortest wait time (~1 month) and I felt like I needed to see a specialist ASAP. I don't regret that decision at all.
     
    hensue likes this.
  18. SOC

    SOC Senior Member

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    FWIW, Dr Lerner is not at all hard to get an appt with. My daughter was in within a month of our first call, and I was in 2 weeks later.
     
  19. SOC

    SOC Senior Member

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    My difficulty is that my symptoms change over the years, so picking a specialist based on prominent symptoms is tough. I worked with Dr Lapp for a couple of years, then switched to Dr Lerner when my daughter and I became too ill to travel long distances. Both are superb doctors, but it seems like everything is different, including the test results. Some of that may be that my illness has changed over time, of course. :Retro smile:

    I'm thinking of sending my daughter to Dr Klimas, now that she's better able to travel. She's doing very well with Dr Lerner -- that's not the issue. It seems to me, though, that Dr Klimas is looking at a bigger picture, particularly in immune issues. In 6 or 7 years with this illness, and a couple of really good specialists, no one has given either me or my daughter any immune system tests. As I watch the XMRV research develop, I think more and more about the implications of immune issues with this illness.

    Anyone else have thoughts on this?
     
  20. CBS

    CBS Senior Member

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    Hi Sensing Progress,

    My comment about Dr. Bateman and gradual onset and fibro was because compared to many CFS doctors, her's is a practice that is probably somewhat more diverse than many other CFS specialists.

    Not too many of the other CFS specialists that I am aware of (and I could easily be leaving someone out) sees as broad a range of patients as she does. She sees CFS patients (as in ME/CFS), fibro patients, and patients that she classifies as chronically fatigued ("little c, little f").

    Personally, I would be quite comfortable seeing her (or recommending her to anyone else).
     

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