The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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This is what we're up against

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Sidereal, Feb 11, 2015.

  1. Sidereal

    Sidereal Senior Member

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    The comment section of Miriam Tucker's new Medscape article is, once again, full of physicians making extremely derogatory remarks about patients with ME/CFS/SEID. Curiously, the article is under the Psychiatry and Mental Health section, whereas one of her recent articles was under Rheumatology.

    Here is the kind of ignorant prejudice a new name is not going to overcome. The only thing that's going to change the minds of unthinking people like this is if they can order a blood test. Until then, it's a fake disease.

    And then one doctor with first-hand experience of how destructive this disease in comes in and shares his personal story:

    And is immediately met with the stock response that it must be "something else" because of course this joke disease couldn't possibly cause this sort of pervasive destruction of your life:

     
    Last edited: Feb 11, 2015
  2. adreno

    adreno PR activist

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    Yes, it doesn't sound as a new name is going to change much, especially when there are still no objective biomarkers.
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    These comments are appalling (with the one obvious exception). :cry:
     
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  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It shows that education is needed in med schools. There lack of knowledge on cfs/me is very poor.
     
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  5. lansbergen

    lansbergen Senior Member

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    As long as their are psychs patients will be tortured
     
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  6. Ecoclimber

    Ecoclimber Senior Member

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    The comment are appalling but they are required to abide by the medical standards and procedures stated by their various medical societies. They are required to adhere to prerequisite biomedical ethical standards. If not, report them to the state health board and consider a malpractice suite for not properly following standard procedures.

    @Sidereal since this number of posts have expanded to 3 pages, it makes sense to edit my response here. I meant my posting to apply to the future implementation of the mandate by the IOM. Once this is in place, then the standard of care is elevated to the new criteria.

    Notwithstanding, no patient should be subjected to redicule, dismissiveness, arrogance, belittlement by anyone within the medical profession. Medical practioners are not gods and should be treated in the same fashion as other professionals. If the above attitudes were experience by someone who was a customer or a client, you bet they would file a complaint with that company.

    In the same manner, medical practioners are governed by a code of ethics of 'do no harm' to the patient which means no further psychological harm. Patients have become too complacent when they are treated with abuse by their PCP often assuming an attitude of 'movie star quality' to their PCP.

    If more patients filed complaints to their state health/medical board and these complaints start piling up against a particular doctor, you would see some action to address this issue to negate this type of behavior. Complaints to the doctors group insurance policy provider and to hospital administrators where PCP has privileges is effective. This in the long run will help other patients as well. I have seen a complete change in attitude and treatment when an attorney friend is present in the examination room vs. when they are not. Doctors fear attorneys. Just mentioning the fact that you discussed your condition with your attorney friend, you wll probably notice a difference in your treatment protocol and attitude by your PCP.

    Didn't mean to be so long winded but I have seen and discuss this in so many situations among my medical and clinical psychologist's friends.
     
    Last edited: Feb 12, 2015
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  7. Sidereal

    Sidereal Senior Member

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    How are they not following standard procedures, Ecoclimber? The current standard of care is CBT and exercise - that's the problem.
     
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  8. lansbergen

    lansbergen Senior Member

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    The symptoms are real and easily treated, but it's not serious.

    How stupid can one be.
     
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  9. Sidereal

    Sidereal Senior Member

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    I know, right? You're left wondering if some of these people are for real.

    It sounds dangerous, real and serious BECAUSE IT IS.
     
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  10. zzz

    zzz Senior Member

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    Hey, that's my doctor you're talking about! And he's one of the best in town.

    Unfortunately. :cry::cry::cry::bang-head::bang-head::bang-head:
     
  11. chipmunk1

    chipmunk1 Senior Member

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    so far no study has shown a cure exists.
     
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  12. Sidereal

    Sidereal Senior Member

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    Now you know what he really thinks. :(
     
  13. Roy S

    Roy S former DC ME/CFS lobbyist

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    @Sidereal thanks for gathering those.

    I read through many of the comments earlier and thought they were actually worse overall than her other recent article's comments.
     
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  14. Sidereal

    Sidereal Senior Member

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    I thought so too. They seem more aggressive and indignant, as though this report is an affront to them and their deeply entrenched beliefs regarding psychosomatic causation.
     
  15. AbbyDear

    AbbyDear

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    these doc's opinions is terrible. it's bad enough we have to suffer and struggle, but to be degraded by people who are in position to help... while there might be range of illness, there might be some taking advantage of situation, but there are many who are truly ill. it's their job to figure it out. why should we suffer due to science lagging. i am quite certain whatever is going on with me is NOT due to some psycho-babble, there are cause and effect, and the way it began, and taking an otherwise productive person to a dysfunctional one... practically overnight...
     
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  16. Snow Leopard

    Snow Leopard Hibernating

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    I'm trying not to get too angry.

    I bet their heads would explode if they saw my sudden onset (couldn't walk) after a vaccination.
     
  17. SOC

    SOC

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    Hey, we've got their names and the internet. Perhaps we should kindly mail these people some informative publications? Perhaps some direct quotations from the IOM report, some research papers, and other strictly scientific info. Nothing emotional, simply informational.

    We're not likely to convince the majority of these closed-minded, unwilling-to-be-educated people, but we might discourage them from running off their mouths in public forums about subjects of which they know nothing.;)
     
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  18. adreno

    adreno PR activist

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    I think exposure is more likely to work. Medscape is semi-private, but at least here they are exposed. If we could increase this exposure even more it would be great, and juxtapose their comments with excerpts from the IOM report.
     
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  19. SOC

    SOC

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    It is exactly that, imo. Given the public comments they made today, I think it's a very safe bet that each one of them been emotionally/verbally abusing, mocking, and mistreating PWME for decades. They do NOT want to admit that they have been abusing seriously ill people -- they'll look like the cruel idiots they are. The only way out of their predicament is to deny that the patients are really ill and to claim the IOM report is a bunch of bunk. Not a very strong position, but where else do they have to stand other than on a public street corner with a "I've been a horrible human being and a total failure as a physician" sign?
     
    Last edited: Feb 11, 2015
  20. Snow Leopard

    Snow Leopard Hibernating

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    It's most worrying isn't it! I mean I can deal with random internet trolls, as hey, they're too stupid to be medical doctors, and then, well, ...
     
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