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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If money no object which clinic, which Dr in the USA and why?

Discussion in 'General ME/CFS Discussion' started by Gday, Mar 26, 2017.

  1. Gday

    Gday

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    If money where no object which Doctor , which clinic would you choose and why in the USA for adults with ME? Which clinics can you get into within a reasonable time period n the USA?

    My friend is very ill 19 years ME, I believe she has many infections and a family member has offered to pay for treatment. Big question is where does she go and why and where could she get into within a reasonable time frame?

    If you had a child with ME which clinic , which Dr would you want to go to in the USA and why?

    Thanks
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    I think this question has a different answer in light of recent research. Any of the well-known and respected ME/CFS doctors in the States will run a great number of laboratory tests--plus a usually significant appointment fee. A few years ago I felt that this was worth the investment. At the moment I don't as research is progressing very rapidly and may well point to a very different set of important tests. Also, at the moment, there are only treatments that improves symptoms to a degree--as the knowledge of what to treat and how is just not here yet.

    So, I am taking the "let's wait" before investing a lot more money in testing and treatments. Hopefully, we won't have to wait very long.
     
    leela, GodGenghis, Basilico and 11 others like this.
  3. Diwi9

    Diwi9 Senior Member

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    @Gday - Sushi makes some great points and I too believe that there is going to be a major shift in testing protocols based on recent published studies and current studies underway.

    I looked into different clinics and have an appointment with the Open Medicine Institute (CA), the only place that could schedule me. I remain wait-listed at Stanford and Bateman-Horne. Nancy Klimas (FL), I believe, has a running wait list. From what I've seen, Susan Levine (NY) is still accepting clients.

    I'm a fan of OMI because they are offering Rituxan as a treatment and I want to have my foot in the door once Phase III of the Fluge & Mella studies are published. There is a hope that Fluge & Mella will have determined a quality predictive screen for responders. Also, it is my suspicion that if Dr. Ron Davis with the Open Medicine Foundation ("OMF") finds a treatment in the next few months, OMI will be the first place to offer it.

    That's my two cents, but there are many thoughts on this forum. For example, Dr. Chia (CA) is the leading clinician with enterovirus involvement.

    How fortunate for your friend, she is lucky to have a benefactor. I hope she can find quality help.
     
    GodGenghis, ukxmrv, Basilico and 5 others like this.
  4. Dechi

    Dechi Senior Member

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    I have the same opinion. Right now I even stopped trying multiple supplements, since it's so hard to figure out if they work or not. I stick with what I know. The only thing I am willing to pay for at the moment are tests to help me get disability, not to treat. I have only been sick for 2 years though, so maybe I'm not as fed up as others. But in those 2 years, I've had dozens and dozens of doctor's appointment. Probably close to a hundred. This is getting ridiculous and getting nowhere.

    So now I am waiting for a cure.
     
    bspg, Helen, Basilico and 2 others like this.
  5. Gday

    Gday

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    Great thanks very valid points I hadn't considered.
     
    dangermouse and Diwi9 like this.
  6. fireflymd

    fireflymd

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    Thank you for posting this. I have also made an appointment with OMI (the first available was in mid-December!).

    I believe I am already doing many of the things I believe Dr. Levine would recommend (I am in NY), so I'm hopeful they have some other ideas. Thank you for pointing out the information on the Fluge & Mella studies.
     
    Diwi9 likes this.
  7. Alvin2

    Alvin2 If humans were rational...

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    If you don't know about the Open Medicine Foundation and the research they are doing then i suggest contacting them and see if they are taking patients
    I don't know how that exactly works, will they examine and treat, are they just interested in clinical trials or blood samples for disease research, i suggest asking.

    That said if the money can be put aside for future care/treatment right now with the research happening that would be my first choice. I wish i had money available to help support me instead of spent chasing a treatment thats not invented yet.
     
  8. Mesurfer

    Mesurfer

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    I'm looking right now too and I have someone who will pay for everything. Does anyone know what markers are used to determine if rituximab is an option at OMI?
     
  9. Jesse2233

    Jesse2233 Senior Member

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    personally I'd go with Dr Peterson
     
    Mesurfer and ukxmrv like this.
  10. fireflymd

    fireflymd

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    What does Dr. Peterson test for? What treatments does he use?
     
  11. Jesse2233

    Jesse2233 Senior Member

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    He tests for all the usual viruses in blood / spinal fluid plus RNase and NK cell function

    He treats with IVIG, Vistide, and Ampligen.
    Based on his testing he has a 70% response rate to Ampligen and has treated more patients with it than anyone in the world
     
    Little Bluestem and fireflymd like this.

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