Thursday, July 10, 2008

Be a Difficult Patient and Get Better Treatment


'Empowered' heroes' hard lessons now help others

Story Highlights

Empowered Patient salutes heroes who embody the spirit of health empowerment

Personal struggles inspired them to create foundations, Web sites to help others

Dr. Andrew Weil: "It is the 'difficult' patients who often have the best outcomes"

    By Elizabeth Cohen

    CNN Medical Correspondent

    ATLANTA, Georgia (CNN) -- When you think about health advice from Dr. Andrew Weil, you probably think of herbs and vitamins, a good diet, and plenty of exercise.

    Many leaders in the patient empowerment movement have been ordinary people, not health professionals.

    And all of that is true. But Weil has one more prescription: Become an empowered patient.
    "Disempowerment," he says, is all too common among patients, and "adds to their distress and is an obstacle to recovery."

    Weil advises: "Do not be passive. Remember: It is the 'difficult' patients who often have the best outcomes."

    This week's Empowered Patient celebrates six people who have taken health matters into their own hands. Armando and Victoria Nahum lost a son to a hospital infection and overcame their grief to start a campaign to help others avoid the same tragedy. Gilles Frydman watched his wife battle cancer and started a listserve that's been used by over half a million people to share valuable advice about fighting cancer. A pharmacist, tired of seeing the same medication errors at his hospital, left his job to start a national campaign to stop medical mistakes.

    Susannah Fox, a lead health researcher at the Pew Internet & American Life Project, says many of the leaders in the patient empowerment movement have been ordinary people, not health professionals. "When your life is on the line, or when your child's life is on the line, nobody's going to be more motivated to get to the truth than you," she says.
    Maybe, she says, it's just because the Fourth of July holiday is upon us, but Fox thinks of patient empowerment as a particularly American movement. "It seems very American to have citizens who change the world for the better," she says.

    * * *

    This is why I blog ... to encourage others to be "difficult" empowered patients who refuse to accept inaccurate psychiatric labels, medications proven to be useless, and shoddy treatment.

    Because I did not get the right treatment in the crucial early days of this relapse, I've been told the deterioration was too severe and I'll never recoverenough to return to the career I loved.  But because of all the false statements in my medical records, I can't get approved for Social Security Disability benefits, either.  I was too sick to stand up to the doctors, and really should have asked one of my friends to come with me to argue on my behalf that the doctor was making false assumptions about me, and demand that the doctor give me the expert-recommended treatment I asked for, and not something that made me even sicker, or even pills that I'd been told not to take because of a prior bad reaction to a related medication.  (I finally accepted that prescription, though I didn't fill it, because I simply didn't have the energy to argue any more.) 

    My doctors got away with a lot that I wouldn't tolerate otherwise simply because I was too sick to wage protracted arguments with them; it was easier for me to go along with what they wanted to do, and prove it was useless by trying it, than to debate with them that I already knew anti-depressants wouldn't help me because I'm not depressed.  At the beginning of every appointment, I asked for sleeping pills, and at the end, I'd be too exhausted from simply getting to the appointment to argue when the doctor yet again gave me something else. 

    If I can spare one patient the same fate, it's worth the time I spend blogging.

    Get the facts, stand your ground (or have a friend/relative stand your ground for you), and don't settle for anything less than the correct treatments for what you have.  This is not about the doctor's ego, it's about your health.

    Sunday, July 6, 2008

    Trials/Tribulations/Opportunities of CFS Research

    ME/CFS costs the US economy $25 billion dollars a year in economic losses and yet receives amongst the lowest amounts of research funding of any disease. Do you want to know why?

    Check out Part II of Dr. Ken Friedman's three part
    interview on ME/CFS. In Part II, this father of a FM/CFS patient,
    researcher, advocate, author and former federal advisory committee
    provides some blunt and at times rather surprising answers about how we
    got to this situation plus his view of the opportunities present.

    You can access this interview at

    Subscribe to Phoenix Rising at

    More on UNUM

    For those of you who are fighting for your private disability benefits, take hope!  Here's another big verdict in favor of the little guy: 

    “This company has been subjected to unprecedented scrutiny from the courts, the media, and government regulators, all of whom have found it improperly handled claims,” Friedman said. “The verdicts are going to keep on coming until it changes its ways.”

    Drugs, Placebos and Perceptions

    Dr. Wilkes writes "ethics professor Howard Brody believes there is a more global explanation for Hoffman's truism. He explains that most medicines exert a powerful placebo response. So, for example, let's say you take a group of people with real and substantial pain – patients who have just had abdominal surgery or broken a large bone – and you give half of them a placebo (sugar pill) and the other half a new drug. Neither group knows what they are receiving. About a quarter of those who receive the sugar pill report significant pain relief.

    Does this mean they are faking their pain? Of course not. It means that the mere act of taking a pill is enough to alter their brain chemistry so that it perceives less pain. This "placebo effect" has been known for centuries. Ironically, the effect of placebo seems, in part, due to the patient's beliefs about the pill, but part of the outcome emanates from the doctor.

    When a patient trusts and respects the doctor, this effect is transmitted to the power of a pill (be it a real chemical or a sugar pill) so that the effect of the medicine is far greater the more a patient trusts the doctor. Once the public loses trust in a pill or treatment, the pill loses its effect. So when a doctor gets pumped up about a new medicine, say as a result of attending a drug company-funded class or a meeting with a drug company's representative, and conveys this excitement to the patient, there is a higher likelihood of a positive effect from a pill even if the pill is ineffective."

    * * *

    It's been noted that there is no placebo effect in CFS patients.  Much of the problem is that we no longer trust doctors; we've been lied to and mistreated so often that we don't automatically believe what they're telling us.

    I do tend to be skeptical about new medications, and rightly so, because so many didn't help at all.  When I was in the clinical trial for the experimental sleeping pill, I could tell the first night of a new packet of pills whether these were the real thing or whether they were placebo.  The real thing put me to sleep, placebo didn't do a thing.  And this was a doctor I did come to trust!