NYTimes article Hope to Patients With Long Histories/Unexplained

Discussion in 'Fibromyalgia Main Forum' started by ephemera, Aug 21, 2006.

  1. ephemera

    ephemera New Member

    From NYTimes. FYI on invisible disabilities, etc. In many ways the "long history of medically unexplained symptoms" is too close to FM/CFIDS symptoms & I don't want us to be linked any more to hysteria, etc. than we already are in the minds of some of the medical community.

    August 22, 2006
    Doctors Give Hope to Patients With Long Histories of Unexplained Symptoms

    By DAN HURLEY

    People with a long history of medically unexplained symptoms — aches, pains, fatigue, dizziness and other complaints for which doctors can find no physical cause — might finally find relief.

    Two new studies by researchers who specialize in the baffling condition called somatization syndrome, estimated to affect up to 3 percent of adults, suggest that the quest for a physical explanation may take on a destructive life of its own. Instead, those with the syndrome should focus on practical strategies to regain normal function and relieve symptoms, the researchers say.

    One study, by German scientists, sought to explain why the doctors’ reassurances were generally ineffective with such patients. The researchers played taped comments by a doctor about a hypothetical patient for two groups of participants, people who had the syndrome and people who did not. Those with somatization syndrome were three times as likely to believe incorrectly that in the course of the comments the doctor had said the symptom had a worrisome physical cause.

    The findings, in the August issue of the online journal Public Library of Science Medicine, offer at least a partial explanation for why patients often go from doctor to doctor and take test after test in a fruitless search for answers: repeated reassurances are simply not being understood.

    A second study, by New Jersey researchers, provides the first published evidence of an effective clinical treatment. The study, in the July 24 issue of The Archives of Internal Medicine, found that patients benefited from 10 sessions of cognitive behavioral therapy specifically organized to help relieve their stress and increase emotional awareness and to get them to become more socially active and think differently about their symptoms.

    “For patients who have these symptoms, their lives are about going to doctors, being physically incapacitated and worrying about it,” said the lead author of the study, Dr. Lesley A. Allen, associate professor of psychiatry at the University of Medicine and Dentistry of New Jersey.

    “They stop their dance classes and don’t go to work and don’t spend as much time throwing the ball with their kids,” Dr. Allen said. “Our treatment emphasizes changing their behaviors, trying to change the focus of their lives from worrying about their symptoms to re-engaging in activities they’ve been avoiding.”

    The 84-patient study, compared the behavior therapy with the standard treatment. In that approach, primary care doctors avoid telling patients that the symptoms are “all in their head” or trying to dismiss them by sending them for unnecessary tests or to specialists. Rather, doctors examine the parts of the body of concern to the patient, convey that nothing appears to be seriously wrong, treat underlying anxiety or depression and schedule regular return visits.

    Dr. Allen, whose book on the new treatment is due out in October, treats patients at the university’s facility for medically unexplained symptoms, one of the few such centers in the country.

    Dr. Arthur J. Barsky, a psychiatrist at Harvard, called the findings very helpful. In 2004, Dr. Barsky published a study showing that cognitive behavior therapy was similarly helpful in treating hypochondriasis, a related disorder in which patients are sure they have a specific illness although no evidence can be found. “We’re starting to gather evidence that with these approaches, people really can cope better and feel better,” Dr. Barsky said.

  2. victoria

    victoria New Member

    doctors for far too long have written too many of us off as hysterical... excuse me, the new word is somatization disorder... well, gee, anyway, if you're not feeling good, isn't is possible to also feel some anxiety and depression? Or that an organic illness like Lyme causes unrefreshed sleep, anxiety, lethargy, etc? (-we already know that it does.)

    Somewhere there is an article that followed patients with previously dx'd psychosomatic illnesses that found upwards of 70% were later dx'd with 'real' organic illnesses. I couldn't find that one, but I did find this, tho in these studies the percentages aren't quite as high.

    -------------
    Medical Decision-Making for People with Chronic Mental Impairments

    by Charles E. Schwartz, M.D.
    from Choice & Responsibility: Legal and Ethical Dilemmas in Services for Persons with Mental Disabilities]

    A Fundamental Problem: Poor Medical Care

    Any discussion of issues relating to medical decision-making for people with chronic mental impairments must begin with the recognition that these individuals have traditionally received terrible medical care. Multiple studies have thoroughly documented the alarmingly high rate of undiagnosed medical problems in individuals with significant mental disabilities.

    In a review by Erwin Koranyi (1980) of a dozen studies conducted over a 40-year period involving some 4,000 mentally disabled persons, approximately half had major medical illnesses, and in one-half to three-quarters of these individuals, the major medical illnesses went unrecognized. Poor medical care occurs both in public institutions and in community-based residential and outpatient care settings.

    Undertreatment

    In psychiatric outpatient settings, Hall and colleagues (1978) found in their study of 658 patients that 9.1% had medical disorders that might be producing the patients' psychiatric symptoms and that three-fourths of these disorders had been unrecognized.

    Koranyi (1979) reviewed some 2,090 outpatients and found that 43% had one or more medical illnesses; referring psychiatrists had missed 50%; referring medical physicians had missed 33%.

    In self-referred and social agency-referred patients, where almost 100% had one or more illnesses, some 46% had gone unrecognized. Koranyi further found that 18% of the medical disorders were causing the psychiatric symptoms, 51% were exacerbating them, and 31% were serious but unrelated.

    When they studied 100 patients in psychiatric inpatient settings, Hall and colleagues (1981) found that 46% of patients had previously unrecognized medical illnesses that directly caused or exacerbated their psychiatric symptoms. An additional 34% of patients had unrecognized serious co-existing medical problems. In fact, ONLY 20% of the psychiatric inpatients were free of significant undetected medical problems.

    Martin and colleagues (1985a, 1985b) demonstrate the unfortunate consequences of poor medical care. In their seven-year follow-up study of 500 individuals with chronic mental impairments, it was found that the mortality rate was twice that of matched individuals who were not significantly mentally disabled.

    And, in several investigations conducted by the New York State Commission on Quality of Care for the Mentally Disabled concerning the deaths of individuals residing in group homes for developmentally disabled persons, it was found that the individuals were exhibiting symptoms of diseases which claimed their lives, but the symptoms were mistakenly attributed to "behavioral problems" or emotional factors.

    ---------------

    If I can find the other article, I'll post it....

    all the best,
    Victoria

  3. ephemera

    ephemera New Member

    nancy & haley,

    yes, the profession leaves much to be desired when we think they are going to help us. Bleah!
  4. kholmes

    kholmes New Member

    "Somatization Syndrome" is indeed just another way of saying "it's all in their heads." It's too bad this kind of nonsense continues to rear its ugly head.

    I'm learning that in the history of medicine, before a cause of an illness is discovered, patients are invariably labelled hypochondriacs. This is nothing new.

    Let's hope CFIDS and Fibromyalgia don't become connected to this new "syndrome." Like Nanjee said, that would set things back about twenty years.

    Let's continue to fight for, publicize, and insist on these illnesses as PHYSICAL, as so many studies, including those from the CDC, have recently shown.

    I wonder if horses can get Somatization Syndrome.


    Kholmes




    [This Message was Edited on 08/22/2006]
  5. 1sweetie

    1sweetie New Member

    That article is frightening.

    I also want to wish you a Happy 50. I saw it on the August Birthday thread a couple of days ago and was waiting to see a thread from you to wish a very belated "Happy 50". I hope you had a good day.
  6. ephemera

    ephemera New Member

    kholmes & 1sweetie, yes, this article is horrific. Gives me more than the creeps.

    Sweetie, I'm over 50 & not an August birthday. Maybe you have me confused with someone else?