Prior entry about Jones' opinions: http://journals.aol.com/kmc528/Lifeasweknowit/entries/2008/01/05/blame-the-patient/1806
Tom Kindlon observes:
"... with so much evidence of things happening in people's bodies, I think money would be better spent with the premise that the people are actually diseased, not that they have forgotten what feeling healthy is like and actually think that they're ill when actually they're just misinterpreting normal symptoms, which is the way White has generally portrayed the interoception model for CFS to be."
I remember what healthy feels like, and it doesn't feel like this, or like anything I've felt like in the past 8 years.
Desperately trying to get back to feeling healthy is not something that's done by someone who is "enjoying the sick role and wants to perpetuate it" -- if that were truly the case, no CFS patient would ever want to see a doctor, would never ask for a prescription. They'd be content to stay home in bed making no effort to find a cure.
The misinterpretation comes in when a patient describes symptoms compatible with the flu (exhaustion, achy, lethargy, sleeping a lot, difficulty concentrating because you're sick) and a doctor concludes that this must be depression. A depression diagnosis REQUIRES an emotional component -- this is not an optional thing -- so if the patient isn't describing crying jags, feeling worthless, thoughts of suicide, etc., it can't be depression.
As Dr. Yunus says, it's not the patients who are disturbed, it's the doctors, because they misinterpret to make things say what they want them to say.
If "all tests are normal", that should prompt the doctor to look further for the cause of the symptoms; it should not prompt the doctor to call the patient a liar when she describes objective symptoms that can't be faked. The abnormalities in CFS will not show up on the basic blood tests, but they are very obvious when the doctor thinks outside the box and does advanced tests.
Erik undertook to check out references to Jones in Osler's Web. Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic by Hillary Johnson and provides the following quote to prove that this is not just some misperception by the patient.
"The Lie" Page 321
During the late 1970's and mid-1980's synthetic interleukin 2 -
alternatively known as T-cell growth factor because it promoted the
proliferation of T-cells--had ben touted as a magic bullet cancer
therapy. By the late 1980's, however, the drug was used only in the
most desperate cases because of its extraordinary toxicity. For many
cancer sufferers, the cure turned out to be worse than the disease.
In addition to "severe cognitive changes (with) evidence of cognitive
deterioration" and mood changes, researchers had noted decreased
energy, fatigue, anorexia, disorientation, chills, heart arrhythmias,
and even coma. "Many (patients) likened their symptoms to an
influenza-like syndrome," one group of researchers wrote. Spurred by two 1987 reports describing the toxic side effects of synthetic Il-2 in cancer patients, symptoms that wer remarkably similar to the symptoms of CFS,* Cheney had been measuring interleukin-2 levels in his adult patients in Charlotte. He wondered if CFS patients were suffering, in some part, from the effects of an exorbitant rush of the substance in response to whatever pathogen was causing their disease. A search of the literature revealed just four other disorders with such a marker: chronic progressive multiple sclerosis, tropical spastic paraparesis, T-cell lymphoma, and AIDS.
Cheney was particularly impressed by the fact that, like tropical spastic paraparesis, the latter two were definite retrovirus-caused maladies, and the first -- MS-- was a suspected retrovirus disease. Strikingly, the levels of interleukin-2 in most of Cheney's patients were higher than in people suffering from any of the four disease described in the literature -- and as much as fifty times higher than in healthy controls.
When in June 1988 the New England Journal of Medicine published a
letter about high interleukin-2 levels in multiple sclerosis
patients, Cheney began to wonder of his interleukin-2 findings
should be published as well. The MS researchers, after all, had used
the same test kit to assay for interleukin-2 that Cheney's lab used,
suggesting that the values between the two patient groups would have
a high degree of standardization. Cheney was impressed, too, that
the interleukin-2 levels in his adult CFS patients were higher than
the levels in the most severe MS cases.
"The average value for rapidly progressing MS is forty-two units of
interleukin-2 per millileter of serum," Cheney commented, "In our
patients, the average value is sixty, but our highest value is
sixteen hundred units per milliliter."
Cheney decided to conscript David Bell into his interleukin-2
research. The Charlotte doctor was curious to know whether children
with the disease displayed the same abnormality; he also wanted to
test patients from a second, geographically distinct location. Bell
was immediately amenable to Cheney's overture. The doctors decided
to select three categories of children: those who were severely ill
with CFS, children who were mildly ill, and healthy children. The
well children had normal levels of interleukin-2; children with mild
disease had levels ten times higher; children with severe disease had levels higher than any measure Cheney could find in the literature for AIDS, lymphoma, tropical spastic paraparesis, or multiple sclerosis.
Clearly, exorbitant interleukin levels are not psychosomatic -- they're related to four serious diseases which are recognized as "real diseases". But interleukin is not one of the things that is normally tested for in first-round blood tests.
And I can tell you from experience, when I had a blood test result that was more than five times normal, the doctor wanted to dismiss it as lab error until the re-test came in at six times normal. So, if you could persuade the doctor to order the test and the IL-2 level comes back as ten times normal or fifty times normal, you'll probably have the doctor making any excuse possible to not believe the result. In a medical culture where we've gotten away from diagnosing on the patient's description of symptoms and moved to diagnosing by blood test, even blood tests are not always believed when they are as far out of whack as they will be for someone who is seriously ill with CFS. Any possible excuse must be used to discredit the patient when the doctor doesn't want to see proof that the patient is truly ill.
And apparently Jones (and his colleagues at CDC) are in the camp of choosing to discredit both the patient and the blood test, when the blood test doesn't show what they expect to see.
Remember, this information about interleukin levels in CFS has been known for twenty years, and still hasn't penetrated Jones' closed mind as evidence of physical illness.
* * *
ADDENDUM
I wonder is a source of Jim Jones' lack of focus on finding the
ongoing physical disease process related to the fact that he thinks
GET (and CBT to do encourage people to do GET) and things like sleep
hygiene is all we need.
I could well imagine Prof. White going on and on about the successes
he supposedly has. I hope something can be done to stop the
influence of CBT/GET-pushers. Otherwise looks like the CDC is going
to waste millions each year. :-(
If a medical researcher thought we had an incurable disease, I'd think they would likely be more focused than Jim Jones.
Tom
Tags: CFS, CFS/ME, ME/CFS, chronic fatigue syndrome, misinterpretation, symptoms, healthy, sick, sickness, blood test, interleukin, Muhammed Yunus,
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