With doctors like THIS, how do we have a chance

Discussion in 'Fibromyalgia Main Forum' started by romanshopper, Sep 22, 2006.

  1. romanshopper

    romanshopper New Member

    http://www.dailyherald.com/business/story.asp?id=228955

    Edward Shorter - PROFESSOR OF PSYCHIATRY - meaning - he teaches other doctors - says that fibromyalgia is 'nonsense.'

    "Fibromyalgia: Chronic pain. Shorter calls it “nonsense.”

    •Chronic fatigue syndrome: Referred to as CFS, it basically means you’re often very tired. Along with Fibromyalgia, it was a popular self-diagnosis in the ’90s, Shorter said. But no clear physical cause has been identified.

    “One of the reasons for the popularity for chronic pain and chronic fatigue nowadays is that they’re virtually impossible to disprove,” Shorter said. “You cannot disprove medically that somebody doesn’t have chronic fatigue, whereas with all the other kinds of psychosomatic symptoms that patients used to have, way back in time, like sudden paralysis, you could disprove them.”
    "

    Is it terribly mean of me to hope that HE will get it one day soon?
  2. Redwillow

    Redwillow New Member

    It is this kind of doctors who just make it harder for us.

    So annoying!

    I agree I hope the doctor who wrote this guess to feel what it is really like up close and personal!

    hugs Marion (Redwillow)
  3. Mikie

    Mikie Moderator

    Research has identified several mutated genes in PWC. There are many other things which show up in tests or exams. For instance: Many of us, myself included, have red crescents in our throats. No one knows why. My PCP said he had never seen it before but now knows to look for it when he has potential CFIDS patients.

    Some of us lose our fingerprints or have wasting of the forearms. Almost all of us will have at least one chronic infection if enough tests are run.

    These are just a few of the physical manifestations of our illness. These docs will have professional egg on their faces when the cause of our illnesses is identified once and for all.

    In the meantime, don't waste your energy wishing him ill. It's not good for what ails us. Better to pray for an end to medical ignorance.

    Love, Mikie
  4. angelstapleton

    angelstapleton New Member

    That makes me so upset . I gess he did not go to school and learn anything. To bad he can't walk in our shoes for 7 days . I love to have his address
  5. apl

    apl New Member

    Wow, what a sham that guy is. This kind of sensational "journalism" is so damaging.

    I sent the article link to my husband, and he's writing the AP/author. I wanted to do the same, but I just don't kow where to start, and I don't have the energy.

    If anyone else here does write them to complain (and perhaps even state that their advertisers might be avoided in the future - get em in their pocketbooks), it might help them better themselves. If I feel up to it later, I believe I will.


    I can post the contact info for the AP and author later if that's allowed, as the info is difficult to find. The Associated Press's mission statement, first line is:

    "...we abhor inaccuracies, carelessness, bias or distortions."

    ...um, yeah, sure you do.[This Message was Edited on 09/22/2006]
  6. Cromwell

    Cromwell New Member

    UYes I noticed he was scathing in Arthritis Today when they published on FM/CFS said the same thing. He should get this PLEASE.

    Love Anne
  7. apl

    apl New Member

    As I mentioned, my DH got so mad about this article that he wrote a response. Today is our 9-yr anniversary since we've been tgether (18 years since we became good friends), and our 5-yr wedding anniversary. I don't think I could have gotten a better gift than this honest response and concern, not just for me, but for all of us who suffer with these DDs (FM or CFS).

    In case anyone is interested, this is what he sent in response to the poor reporting in this article. I tried to break it up into small sections for an easier read:

    To Whom It May Concern:

    I am writing in reaction to the Hillary Rhodes article "Is Your Computer Making You Sick?". In the AP's Statement of Values and Principles, the first concept expressed is "we abhor inaccuracies, carelessness, bias or distortions".

    This article conveys an extreme distortion without counterpoint, and a careless approach to some very serious issues.

    I am not speaking directly of Morgellons as I have no experience with it, but of Chronic Fatigue Syndrome (a.k.a. Myalgic Encephalomyelitis) and Fibromyalgia.

    The fact that the only reference is by a psychiatry
    and medical history professor calling this devastating condition "nonsense" restates the public fallacy initiated by a psychological consortium 3 decades ago.

    This was also the impression of Multiple Sclerosis for the decades prior to science catching up with the diagnosis capabilties.

    There is an immense amount of current information regarding this ailment - which is actually the same condition referred to, in its early days of diagnosis, as the misnomer "Yuppie Flu" in the article (it is evident in each demographic segment).

    In fact, distinct biological markers have been identified, such as changes in nerve tissue, pinpoint lesions shown in brain scans, immunological markers, extremely high rates of endocrine imbalance, cognitive decline, and other devastating impairments which by any statisticain's gauge are significant.

    Although it is true that the Epstein-Barr virus is found in 90% of the human population, the reason it was raised in this context was due to the evidence of extremely elevated antibody levels in CFS/FMS patients, signalling a reactivation of the virus.

    In the majority of the population, this virus is supressed by a steady antibody level. It is seen by researchers as a co-infection, not a primary cause.

    There has also been a test developed recently for CFS by privately funded efforts, based on the structure of the RLnase protien, which regulates programmed cell death. This is out of balance in CFS patients, which provides a great deal of insight to the fatigue and pain experienced by its sufferers.

    To see the dismissive approach presented by the reporter without objective research into the subject is extremely distressing, as it is this attitude which allows the misappropriation of government funding for CFS research to continue unnoticed.

    If you want to do some real journalism, that would be an excellent subject to see investigated. Perhaps then I can have a little more hope for a cure being found so that I do not have to see my wife suffer and struggle with this
    crippling disease every day, and so the estimated 7 million citizens of the US afflicted with it may also lead normal lives again.

    With such light footwork on researching not only CFS and
    Fibromyalgia, but the main subject of Morgellons, I feel compelled to
    quote an additional passage from the AP Values Statement:

    "Anyone who works for the AP must be mindful that opinions they express
    may damage the AP's reputation as an unbiased source of news."

    Today, that reputation seems feeble.

    Sincerely,
    [my DH]



    [This Message was Edited on 09/22/2006]
  8. romanshopper

    romanshopper New Member

    Tell him that I said THANK YOU for writing that. :)

    I don't have the mental where withal to even think of it. I could barely get out of bed today and the fog has been so severe it has been like grey out.
  9. StephieBee

    StephieBee New Member

    OK call my hysterical...but the government recognizes me as disabled, so does the state because they have issued me a handicap placard.

    There was a psychiatrist working at an inpatient rehab facility for chronic pain suffers that my father went to. He would keep telling these patients...that paid upwards of $30,000 to stay there...that the pain was 'all in their heads'. My father has a metal plate in his neck and has partial paralysis,cervical disc damage and nerve damage that is all permanent. My father told him that unless he wanted the cane my dad uses shoved where the sun dont shine that he should change his tune.

    Oh ya...and according to this doctor...my dad is a drug addict also because he relies on pain meds to do the little functioning he is able to do. I say phooey!


    BTW, apl....that letter was AWESOME! That doc will soon have a case of 'FOOT-IN-MOUTH SYNDROME' LOL!!!

    Hugs to all,
    Stephanie

[ advertisement ]