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Is there a list of research findings or articles for medical specialists?

Discussion in 'Latest ME/CFS Research' started by November Girl, Aug 20, 2011.

  1. November Girl

    November Girl Senior Member

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    Last year, I had to see a couple of specialists for the first time in many years. Neither the cardiologist nor the neurologist wanted to hear anything I had to say re ME/CFS. They obviously had no clue that there are plenty of findings in these areas that are somewhat unique in PWME. Is there any online source that tracks studies as they pertain to specific areas of medical specialty? A brief summary would be great. Even a list of studies would be helpful - if nothing else for the patient to read. For many years I was too brain-fogged to have benefited from something like this, but it would be a real help now.
     
  2. richvank

    richvank Senior Member

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    Hi, November Girl.

    You might find it interesting to read the pathogenesis paper I presented in 2007. It cites quite a few of the research studies and pulls them together in support of a hypothesis called the Glutathione Depletion--Methylation Cycle Block hypothesis. You can find it by clicking on Wiki at the top of this page, and then on General Wiki. There is a directory to my papers in the first section, which is listed last in the sequence.

    Best regards,

    Rich
     
  3. *GG*

    *GG* Senior Member

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    Concord, NH
    I think this is the link:

    http://forums.phoenixrising.me/forumdisplay.php?91-General-Wiki-Pages

    GG

    PS Rich do you have this in a PDF?
     
  4. November Girl

    November Girl Senior Member

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    Thank you, Rich and GG. I'll take a look at these tomorrow.
     
  5. Snow Leopard

    Snow Leopard Hibernating

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  6. fla

    fla Senior Member

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    The new ICC has an impressive list of references to scientific papers backing up most of our symptoms.
     
  7. richvank

    richvank Senior Member

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  8. ahimsa

    ahimsa Senior Member

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    My problem has not been with a lack of information it has been lack of motivation of any doctor to read the information. And I'm not talking about cutting edge research, something that is not yet accepted. I'm talking about well established medical information.

    For example, it is pretty non-controversial that Orthostatic Intolerance is a "real thing" in the world, right? And I've had two separate tilt table tests, both times with a clearly abnormal response (passed out in phase one, no isoproterenol required), that showed Neurally Mediated Hypotension. My cardiologist prescribes several medications for this problem. So far, so good.

    In 2010, I went to two different specialists for various problems. Leaving out other details of the doctor visits, both specialists asked me about my prescriptions (naturally) and so I told them midodrine, fludrocortisone, time-released potassium. Then they asked why do you take those drugs? So, I said Orthostatic Intolerance. Both doctors (as Dave Barry used to say, I'm not making this up) asked me, "What's that?"

    Neither of them had ever heard of the condition. And then, when I gave them a handout on Orthostatic Intolerance from Johns Hopkins (a medical school with a good reputation so you'd think an MD would at least glance at it), neither doctor would even read it. And one of the doctors even asked me, "So, how did you get it?" I should have said "If you refer to page 4 it says that doctors don't know what causes it." But I was so shocked by the question that I just stammered that I didn't know what caused it.

    I'm lucky to have a very supportive and helpful primary care physician and cardiologist. But so many doctors simply have no curiosity beyond their very limited areas of expertise.

    November Girl, sorry for the rant! I just wanted to let you know what you may be up against when it comes to doctors being unreceptive to information.

    I hope your experience is different, of course, but I've found very few who are receptive and who actually listen to the patient. I had to "fire" a lot of doctors before I found the doctors I have now. I've been seeing the primary care physician since 1994 and cardiologist since 1995. I have seen a few other specialists over the years but barring things that were very easy to diagnose and treat (my gall bladder was removed in 2006, I wish all my medical problems were this straightforward) I've had little luck with doctors.
     
  9. K2 for Hope

    K2 for Hope ALways Hoping

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    There is a complete Post/Active thread on "Discussion of the NEW International Consensus Criteria" on this website - Phoenix Rising.
    Discussing:
    BREAKING NEWS - Myalgic Encephalomyelitis: International Consensus Criteria

    I truly appreciated that there is now a "Publication" form an International reputable source.
     

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