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Mt. Sinai: "CFS" listed under Mood & Anxiety Disorders

Discussion in 'Action Alerts and Advocacy' started by justinreilly, Oct 23, 2011.

  1. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    Mt. Sinai lists "CFS" under Mood & Anxiety Disorders Resources:

    http://www.mssm.edu/research/programs/mood-and-anxiety-disorders-program/resources

    This isn't appropriate coming from the new home for an ME clinic (with Dr. Enlander)
    I sent an email and you can too!

    dan.iosifescu@mssm.edu

     
  2. ixchelkali

    ixchelkali Senior Member

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    I really think that a major problem for ME/CFS is what is being taught about it in medical schools. There's a great deal of misinformation being passed to the next generation of physicians. I think we need to develop a good, concise curriculum and start a big push to get it disseminated to medical schools. I don't know how one makes something like that happen, but it seems like an area where the Dept of Health and Human Services could function, and where the CFSAC could provide leadership. The new ICC would be a good springboard; it could provide a solid core of the curriculum, and even better when they finish the clinical guidelines to go with it. Of course, a strong national (or international) patient advocacy organization would help.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

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    This is a perfect example of the problem of having CFS in the vague "signs, symptoms of ill-defined conditions" category (R53.82). If it was in nervous system category in the U.S. ICD-10-CM, all we would have to do to get them to change it is to show the code book.

    But with it in the "I don't know what it is, but the person has symptoms" category, anyone can put it in whatever ever category in their institution they want. And how would you tell them it isn't? Well, if ICD-10-CM is not changed back to way ICD-10 has it, then you would have to show studies to prove it.

    As long as CFS is in the "vague, I don't know what it is" category, we can't use ICD-10-CM to get this corrected.

    Tina
     
    Nielk likes this.
  4. usedtobeperkytina

    usedtobeperkytina Senior Member

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    by the way, Justin, I would love to hear Enlander's opinion on this. Make sure it doesn't harm anything he is doing. If it won't, then this seems like something that does need to be addressed.

    Tina
     
  5. Ocean

    Ocean Senior Member

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    I suspected that about medical schools too Ixchelkali. When I saw a very young doctor who seemed to be just out of medical school she advised me to exercise to the level of raising my heart rate and to do CBT. She dismissed out of hand my concerns about POTS and seemed to know nothing about CFS. She insisted her patients improved with exercise and that that was the key to improvement. She also minimized the condition and said it was good news my tests were normal and that I should be glad that I don't have any autoimmune condition, she said this despite my being housebound and mostly bed and sofabound, while I know many with autoimmune conditions may never get that bad. Of course many also do but the point is it wasn't good news that I had a disabling condition with no treatment but she was acting as if that should be a wonderful relief to hear. The doctor I see now who is much older is not an expert but has never suggested exercise, understands pacing, and was very open to my getting tilt table testing. He is also very sympathetic and understands the debilitating nature of the condition.

    The doctors I see now actually show interest in the condition and honestly admit that there is an overall lack of understanding about it and acknowledge the complicated nature of the condition. The doctor who acted like she had the answer and the exercise was the cure I suspect had not actually seen this play out but was just citing what she'd learned rather than what she'd seen in actual patients. I can't prove that obviously or know it for a fact but that's the feeling I got. Thank goodness I'd done enough research and seen the effects of exertion on myself enough to know that her advice was extremely harmful and to move on to a different doctor right away. I'm currently unable to handle most exertion much less actual exercise. Very sad to think someone could take her advice and possibly become irreperably worse.

    I myself had doctors dismiss my symptoms as anxiety and depression for years, despite my not having either anxiety or depression, and not getting a diagnosis led to my now being housebound as I overdid activity since I didn't know what I had and how to prevent worsening. I really resent knowing how bad things are for me could have been prevented had doctors not dismissed physical symptoms as psychological. It's good to see many people being diagnosed much sooner before they get really bad off but sad to see CFS/ME still being categorized this way by some and sad to see the recommendations of exercise continue in the media and health sites.
     
    justinreilly likes this.
  6. Boule de feu

    Boule de feu Senior Member

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    I know this is not right since a health psychologist wrote that I did not have a mood or anxiety disorder.
    I do have ME. So in my case, how could they explain putting ME in this category?
     
  7. Desdinova

    Desdinova Senior Member

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    Wonder what the CFIDS Ass. has to say about a link to their site being listed under "Mood and Anxiety Disorders Program" as a resource?
     
  8. Boule de feu

    Boule de feu Senior Member

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    Do they even know?:confused:
     

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