Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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question re OMI, Kogelnik, Kaufman and PEM

Discussion in 'General ME/CFS Discussion' started by Denise, Jun 22, 2017.

  1. Denise

    Denise Senior Member

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    Do Drs. Kogelnik, others at OMI, and/or Dr. Kaufman require PEM to diagnose ME/cfs?
     
  2. Kati

    Kati Patient in training

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    i am not speaking for any of them, however I will make the following remark: they will diagnose and see any patient who comes through the door, through clinical findings and blood work. They will be honest about what they think, whether they feel the diagnosis is ME/CFS or it's something else.

    However in research, I am very sure they pick subjects at meet the Canadian Consensus criteria or more.

    I am curious about why you are asking?
     
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  3. Denise

    Denise Senior Member

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    @Kati - I am asking on behalf of patients who need to be evaluated but want to be certain they are being appropriately diagnosed.
     
  4. Gingergrrl

    Gingergrrl Senior Member

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    I just looked at OMI's website which currently lists only Dr. Kogelnik and Katie Reid (PhD and nutrition counselor) as the two clinicians. Dr. Kaufman and Dr. Chheda's names are removed. So, as far as I can tell, this is how OMI is describing their current services. I had a phone consult on Mon w/Dr. Kaufman and he is working on getting legal permission to release the name of his new clinic (I have no idea what it will be as they cannot disclose it yet) but I imagine that it will have a website and detailed description in the future, too.

    My personal experience with Dr. Kaufman is that he follows where the evidence leads as the illness changes. He will initially test you for everything that could possibly be relevant based on your personal history and symptoms and to rule things out that could be possibilities. So if one patient came to him and had Lyme & tick borne illnesses plus SIBO they would be treated for that vs. if another had a million autoantibodies and POTS they'd address that. Many of his patients have mast cell disease so he is very familiar with treating this now.

    Many of course have ME/CFS (I do not know what percentage and I assume the majority) but many also do not. I have several close friends who see him (most are from Phoenix Rising but a few from my FB groups or by sheer coincidence) and many of us have different diagnoses and treatment. I feel like some doctors have a "one size fits all" protocol but he does not. In my case, one of my autoantibodies links to small cell lung cancer (which I do not have) but he was very diligent about ordering lung cat scan for me or other things that pertain to my specific case.

    I probably typed too much (as usual!) but hoping this helps to answer the original question.

    Edit: I realized I did not include the link that I quoted above and it is here: http://www.openmedicineinstitute.org/the-clinic.html
     
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  5. ebethc

    ebethc Senior Member

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    @Gingergrrl

    Thanks for the info on dr Kaufman! I'm too broke to see him now, but he's the doctor I want to see when I can... please keep us updated where he can be found in the future! He has such a common name that it would be easy to lose track of him
     
  6. CedarHome

    CedarHome

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    Do you have current contact info for Dr. Kaufman?
     
  7. Gingergrrl

    Gingergrrl Senior Member

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  8. CedarHome

    CedarHome

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    Thanks!
     
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