Saturday, August 16, 2008

New Criteria for CFS (ME) requires MD co-signer

Ellen Goudsmit (CFS patient and published psych expert by trade) requests help from interested and informed MDs.  Contact her directly at ellengoudsmit@HOTMAIL.COM:

I am looking for physicians to co-sign an article describing new research criteria for myalgic encephalomyelitis (ME).

The criteria in question are based on the concept of ME devised by Ramsay. They supercede the London criteria developed during the 1990s for AFME. The criteria have already been used in one study (accepted for publication). 

I believe that by placing the criteria in the scientific domain, it will  be possible both to assess their validity and select patients for research identifying and comparing the subgoups of CFS.

If interested, please contact me for the draft article.


Ellen Goudsmit PhD CPsychol AFBPsS

For information on ME and CFS, see:  and

Thursday, August 14, 2008

Getting the pain pills you need

By Kate Rope

Good chronic pain treatment can be hard to find. A chronic pain patient has every right to believe that his or her doctor will listen sympathetically and prescribe the appropriate treatment, but that is not always the reality.

People who experience chronic pain should be specific when describing it to their doctors, experts say.

Truth is, many doctors have not been trained to deal with the complex, changing area of chronic pain treatment. One 2001 survey of primary care physicians' attitudes toward prescribing certain medications found that only 15 percent said they enjoyed working with patients who have chronic pain.
This can lead to frustrating encounters at the primary-care level, especially if your doctor is rushed.

Pressures on doctors

"Doctors don't want patients to suffer; they want people to get better," said Dr. Bill McCarberg, founder of the Chronic Pain Management Program at Kaiser Permanente in San Diego, California. "But they feel stress; they feel time constraints; they have to deal with pre-authorizations; it's not the kind of practice they wanted. They're stressed, and that leads to moving patients along."

"As a doctor in today's medical system, it's difficult to deal with chronic pain conditions," agreed Dr. S. Sam Lim, a rheumatologist at Emory University School of Medicine in Atlanta, Georgia. "Most practices are forced to see a certain number of patients in a limited amount of time. [With chronic pain,] it's not so simple as five minutes, a few questions and handing out a pill. It takes some time. And our system isn't set up for that."

"The patient needs to realize that the doctor may not be able to discern what's going on in the first visit. Often, it takes a few visits," Lim said. How to describe your pain to doctors Chronic pain, when no cause can be found
    Doctors are frustrated by what they can't "fix."

    In 25 years of caring for her chronically sick husband, who was injured in an industrial accident, Ann Jacobs, 62, of Laramie, Wyoming, has watched physicians struggle with the trial-and-error progress of his treatment. "Doctors are programmed for success stories," she said.

    Because of its complexity, pain treatment has emerged as a separate, multidisciplinary specialty. That's good, but pain patients often need to get to a pain specialist through their primary care physicians. How specialists can help you tackle your chronic pain

    Emotions can cloud the diagnosis

    The emotional effects of chronic pain may make diagnosis more difficult. Maggie Buckley, 46, of Walnut Creek, California, learned this the hard way. She has Ehlers-Danlos syndrome, a rare genetic tissue disorder that leaves her with chronically painful joints.

    "If you say, 'it's really depressing and upsetting me; I'm in so much pain,' " Buckley said, "doctors will see it in terms of emotion and treat it as an emotional problem, referring you to psychiatric care or antidepressants." That is sometimes the appropriate treatment route, because antidepressants can treat chronic pain, and there is a link between pain and depression, but you need to stand your ground and make sure any treatment is addressing your specific problems.

    Be gentle about your pain, but be firm

    It's important to be clear about your pain and explain the way it impacts your life when you're talking to your doctor. Don't be intimidated. Stand your ground, calmly.

    "Patients really need to be persistent about their complaints in a way that is constructive to get across to the physician that this is something real," Lim said. "There are some physicians who are more open to listening than others. It may take a few doctors to find a marriage."

    You have to go very gently to start with," Jacobs advised. "Listen to what the doctor has to say first."

    Then, if you're not satisfied, press harder. But remember that the most important thing is to create a relationship with your doctor in which you're a team, both looking for the best way to alleviate your pain. After he or she has assessed your needs, you can consider seeing a pain specialist.

    * * *
    I struggled for years to get my pain taken seriously as the root of the other problems and not a symptom of depression. 

    As Maggie Buckley says, don't give them any opening to attribute the pain to emotional problems -- but even though I never used words like "depression", just saying "I was diagnosed with Chronic Fatigue Syndrome", "tired" and "I can't do ___" was enough to get me a steady diet of anti-depressants from doctors who didn't know that CFS and depression are not the same thing.  They simply assumed that "I can't" meant "I'm afraid I'll fail" rather than what I meant "I have repeatedly tried and proven that I cannot successfully perform this task".  That just wasn't what they wanted to hear, because that would have meant they had to take the time to look further rather than brusquely writing another prescription for a different anti-depressant and reassuring me that sometimes it takes several tries to find the one that works.  Completely unwilling to listen to any protest on my part that I am not depressed, no licensed psych has ever found depression ... the psychs keep sending me home with the observation that every single "symptom of depression" that the MDs are using to diagnose depression is also a symptom of physical illness; the psychs keep trying to diagnose "sounds like the flu" and the MDs don't want to hear it.

    If a doctor tries to give you some argument that in order to prescribe pain pills he has to fill out a long form, tell him that's BS.  I have it on authority of someone who does write those prescriptions that the form in question was discontinued.  The only difference between prescribing pain pills and prescribing anti-depressants is that for narcotics they have to use a prescription pad that makes three NCR copies for tracking purposes.  The amount of actual writing they have to do is exactly the same.

    Finally I found a doctor willing to listen, and not assume, and got pills that help me sleep despite the constant pain.  That was the turning point.  And proved that the reason the virus got the upper hand was that months of pain-disrupted sleep had taxed my immune system until it could no longer control the virus.   It had nothing at all to do with divorce, depression or any other emotional problem; there were objective reasons for the pain, which no one bothered to x-ray because they were so convinced I was "just depressed".

    Tuesday, August 12, 2008

    Mitochondrial Dysfunction and CFS

    Dr. Cheney has been referring to mitochondrial problems in CFS for at least ten years.  This research may be the next big step forward for CFS.



    1.  New Mitochondrial Research Could Transform Medicine.

    Professor Patrick Chinnery
    Newcastle University, UK

    The United Mitochondrial Disease Foundation (UMDF) today announced landmark research finding that one in every 200 people has a DNA mutation that could potentially cause a mitochondrial disease in them or their offspring. Mitochondrial disease is a devastating and often fatal disease, and mitochondrial disorders are at the core of many well known diseases and chronic illnesses, such as Alzheimer's disease, Parkinson's disease and autism spectrum disorders. This research, which was partially funded by UMDF, was conducted by Patrick Chinnery, MBBS, PhD, MRCPath, FRCP, Wellcome Senior Fellow in Clinical Genetics and professor of neurogenetics at Newcastle University in the UK.
    PR Newswire Press Release, United Mitochondrial Disease Foundation
    Information Provided:

    Pathogenic Mitochondrial DNA Mutations Are Common in the General Population (Full Text)
    Patrick F. Chinnery et al, DOI 10.1016/j.ajhg.2008.07.004,

    The American Society of Human Genetics
    * Massive, Revolutionary Breaking News For Patients
    David Kirby, The Huffington Post/The One Click Group
    * Hannah Poling Autism-Vaccine Case:
    Implications for ME/CFS-labelled patients

    Lara, Health Advocate

    2.  Massive, Revolutionary Breaking News For Patients.

    Both Mitochondrial 'Disease' and 'Dysfunction' are far more common than previously thought. This landmark research conducted by the United Mitochondrial Disease Foundation has significance for autism and other disorders that is 'earth shattering'. One Click Group Director Jane Bryant 'comments: "Countless numbers of patients labelled with the ME/CFS waste paper basket diagnosis have tested positive for severe Mitochondrial Dysfunction, including my son. This new research has profound implications for these patients and for so many others." One Click publishes the details of where to get tested.
    David Kirby, The Huffington Post/The One Click Group
    Information Provided:

    * Pathogenic Mitochondrial DNA Mutations Are Common in the General Population (Full Text)
    Patrick F. Chinnery et al, DOI 10.1016/j.ajhg.2008.07.004,

    The American Society of Human Genetics
    * Hannah Poling Autism-Vaccine Case:
    Implications for ME/CFS-labelled patients

    Lara, Health Advocate