From Cort Johnson phoenixcfs@yahoo.com:
This is part one of a three part interview with Dr. Ken Friedman. Dr.
Friedman was on the CFSAC committee from 2003-2006, he co-authored
the New Jersey Consensus Manual For the Diagnosis and Management of
CFS, he's a certified trainer of the CDC's CFS physician education
program, and he played a vital role in the Vermont CFIDS
Association's recent legislative efforts. Over the past few years, he
has produced several papers aimed at assisting CFS patients
understand the issues they face at the federal and state levels. He
is one of our most active and knowledgeable advocates.
In this interview Dr. Friedman gives a blunt appraisal of the
federal response to CFS and its interactions with the federal
advisory committee for CFS, the CFSAC. You can find it at
http://phoenix-cfs.org/IntFriedmanPtINov07.htm
Part II will deal with CFS research, the Roadmap Initiative
Part III will focus on CFS advocacy and the future of CFS.
Cort Johnson
"If NIH had not solved CFS in the past 15 or 20 years, why would giving them money to do the same thing for another 15 or 20 years lead to a better result?"
"I do not think that the lack of response from the U.S. Secretary of Health disillusioned any member of the committee. I think anger, resentment, and confusion would be more accurate descriptions of our feelings."
"laboratory chiefs are after Nobel Prizes in medicine. Those interests will not easily be subverted into altruistic CFS research based on the need for more compassionate care!"
"Yes, both NIH and the CDC were paying more attention to CFS, but is that amount of attention sufficient for the magnitude of the problem? Is that amount of attention sufficient to find the cause of CFS, or find a treatment? Obviously not!"
"The efforts of the DHHS to educate physicians and other healthcare professionals about CFS are, in my judgment, inadequate. ... Not one patient had seen the Toolkit in any healthcare provider’s office that they use. Fortunately, Bernie Sanders had sent a representative to the program. We had met priorto my presentation. I looked him straight in the eye, and said, “We have work to do, don’t we?” ... The CDC/CAA “awareness campaign” is a multi-million dollar campaign. If it is not reaching all areas of country, and if it is not reaching all segments of the healthcare provider community, should we not be doing something more?"
"Unfortunately, the message of the Spark Awareness Campaign is to, “Get diagnosed, get treated,” and ends there! The false assumption made in that campaign is that there are healthcare providers capable of diagnosing CFS and capable of treating it."
* * *
And this is the problem ... there are still doctors out there who think that patients say "I have CFS" to avoid the stigma of mental illness of calling it depression. These uneducated doctors treat the patient for depression, and get frustrated when the patient reports the treatment is not helping. In fact, it's been proven time and again that anti-depressants are useless for CFS if the patient does not also have depression (in which case, it relieves the depression symptoms and leaves only the CFS portion to deal with -- for some patients, that's enough to get them back to work).
As long as doctors are confused about the origin of CFS (the "real" kind starts with a virus), they're not going to be able to diagnose it or treat it.
Medical schools and continuing education programs need to go back to teaching what we knew about ME before it was re-named CFS. When I first read Dr. Ryll's handout, I was surprised by his polio connection; no doctor had ever mentioned that to me before. Then I did more research and found that the doctors of his generation knew that; the doctors of the current generation think ME/CFS has nothing to do with viruses because that's what they were taught. They have no idea that there are symptoms other than fatigue, or that there are neurological tests to prove the patient isn't faking, because that wasn't taught; it makes sense to them (and to a lot of other people) that the only symptom of Chronic Fatigue Syndrome would be fatigue. Throw at them the patient-preferred name Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) and they have no clue what immune dysfunction you could possibly be talking about ... the low level of NK cells in CFS has been known to researchers and patients for a long time, but has never gotten out to the physician community at large.
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