What CDC Says about CFS

After 20 years of denial, CDC has admitted that CFS is "real".  These are excerpts from the recent press conference in which they announced the official government stance that this is a very real, biological, disabling disease.  You can read the whole thing at http://www.cdc.gov/od/oc/media/transcripts/t061103.htm?id=36410

Dr. Julie Gerberding, head of CDC "We are committed to improving the awareness that this is a real illness and that people need real medical care and they deserve the best possible help that we can provide."

Dr. Willian Reeves of CDC: "We've documented, as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known, very severe medical conditions."

Reeves again: "the best predictor for CFS was intensity of the initial infectious disease. The sicker the patient when he or she first got infected, the more likely they were to have persisting chronic symptoms. There were no other factors that we found in this study, psychological or biological, that held up under thorough analysis."

Harvard's Dr. Anthony Komaroff: "there are now over 4,000 published studies that show underlying biological abnormalities in patients with this illness. It's not an illness that people can simply imagine that they have and it's not a psychological illness."

Komaroff continues: "First, abnormalities of the brain. It's hard to study the brain in the living human being. Invasive techniques like a brain biopsy are reserved only for people with life- threatening illnesses. But over the last 20 years, the number of non-invasive techniques to look at the brain has grown enormously and here's what we're learning.

"First, brain hormones. The brain has hormones produced in two major centers: the hypothalamus, pituitary gland. And a whole bunch of studies show that that hormone system is different in patients with chronic fatigue syndrome than in healthy people, people with depression and other illnesses.

"Brain imaging studies, particularly MRI, or magnetic resonance imaging, scans and nuclear scans of various types, have shown inflammation, reduced blood flow and impaired cellular function in different locations of the brain. In many patients, cognitive function is impaired. And finally, the autonomic nervous system, which controls blood pressure and pulse and other things, most studies find to be abnormal in this illness.

"Now, none of these nervous system abnormalities is constant or permanent. But when they're there, they change a person's life. And it's entirely plausible that the abnormalities that have been seen on these various neurologic testing techniques could explain the symptoms of this illness.

"What about the immune system in chronic fatigue syndrome?

"Many studies have found that by several criteria the immune system appears to be in a state of chronic activation, as if it were trying to fight against something foreign.

"The research described by Dr. Reeves on looking at gene expression studies, for example -- and this is now true in several different laboratories around the world, looking at different patients -- the genes that control the activation of the immune system are abnormally expressed in patients with this illness.

"Dr. Klimas and other investigators have shown that different cells within the immune system are abnormal either in number or their capacity to function."

Dr. Nancy Klimas, noted researcher: "Historically, it's been the lack of credibility in this illness that has been one of our major stumbling blocks to making progress.  Well, today there is evidence of the biological underpinnings, as Dr. Komaroff described. And there's evidence that the patients with this illness experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis. And that has certainly given it a level of credibility that should be easily understood by people's friends and families, and certainly, by us, the health care providers."

 

QUESTION: You've cited quite a bit of research that validates that CFS is actually a real disease.

I'm wondering: Why is there still such a level of skepticism out there in the medical community? Is it simply a lack of awareness among health professionals? Or are there still some areas or some gaps in the research that raises questions that need to be addressed that contributes to that skepticism?

MCCLEARY: Dr. Komaroff?

DR. KOMAROFF: I think there are an awful lot of skeptics I've met who really just haven't read the research literature, don't even know that there are 4,000 peer-reviewed published papers out there.

And I think that's probably the biggest factor, combined with the fact that those people, sort of, took a stand early on as to what they believe and have been reluctant to back off in the face of the evidence they've not made themselves aware of.

 

Clearly, it is now official that anyone who doesn't believe CFS is a very real, disabling disease needs to read the literature that proves -- to the satisfaction of the US government -- that the patients are not faking, the doctors who believe in it are not quacks. 

The real quacks are the doctors who, for the past 20 years, have ignored every one of those 4000+ research studies proving objective, documentable abnormalities in patients who have CFS -- true CFS, not the symptom of "chronic fatigue", which is another thing entirely.

Dr. Bell's list of symptoms, known in 1993 already:

exhaustion, headache, malaise, memory loss, muscle pain, difficulty concentrating, joint pain, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness and/or tingling in extremities, fainting spells, light-headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities...

Although these symptoms will not show up on a blood test, many of them are "objective" in the sense that an observer can see for themselves that the patient fainted, the patient is awake all night, the patient is gaining weight without changing their food intake, the patient's lymph nodes are palpably swollen...

In other books, there are long lists of blood tests which also objectively prove that there is something very wrong.  As Dr. Bell notes "the CBC is not an overall portrait of health."  Yet many doctors wrongly assume that if your CBC is normal, there's nothing wrong, and don't bother to do the follow-up tests for things that CBC doesn't check. 

All this has been known for years, but some hide-bound doctors refused to consider anything that conflicted with their personal theories that were often based in misogynism more than science.  Now that even CDC has admitted that CFS is real, those doctors will have to do some serious soul-searching about why they have been so committed to the idea that CFS is not real.

Oddly enough, some doctors who dispute the existence of CFS have no trouble in accepting a very similar collection of neurological symptoms adding up to Multiple Sclerosis, for which there also is no specific blood test.