What the EXPERTS say about CFS

QUOTES FROM EXPERTS

CFS represents the final common pathway for multifactorial disorder with a limbic system encephalopathy causing autonomic dysfunction and subtle neuroendocrine derangements. – Jay Goldstein, M.D.

CFS is a debilitating illness involving symptoms and abnormalities of the immune system, circulatory system, central nervous system, and hypothalamic-pituitary-adrenal axis. – Dr. Katrina Berne

The name "Chronic Fatigue Syndrome" was selected by a small group of politically motivated scientists. Their deliberate intention was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. – Hillary J. Johnson

The name of an illness has a profound impact upon those who suffer from it, upon how the uninformed perceive it, and upon medical research and treatment.– John Herd

Historically, illnesses are attributed to temperament when science lacks, or refuses to seek, answers.– B.F. Synhorst, M.S.W.

Attribution of illness to ... unconscious motivation is inaccurate, unfair and insulting. – Dr. Katrina Berne

This is not a "benign" disease. The loss to the minds and bodies is inestimable. – Michael Goldberg, M.D.

Avoid the labels "somatizer", "hypochondriac", "neurotic" and "crock". All symptoms have origins and should be taken seriously.– Dr. Katrina Berne

"Just learn to live with it" is not an acceptable approach to pain management.– Steve Fanto, M.D.

Just because standard testing shows normal values does not always mean everything is fine. It may simply mean that the proper tests have not been run. – Devin Starlanyl, M.D.

When these conditions are vigorously and appropriately treated at their onset, much pain and dysfunction can be prevented. – Devin Starlanyl, M.D.

Just because the doctor may not be familiar with your medical condition does not mean it isn’t real.– Devin Starlanyl, M.D.

It is a sorry state when patients must be responsible for the education of their doctors, but that is where we are.– Devin Starlanyl, M.D.

CFS is characterized by extreme exhaustion lasting 6 months as well as biochemical abnormalities

It is not the patients who are disturbed, it is the physicians who are psychologically disturbed because they ignore the data, and whatever data there is, they manipulate it to say what they want it to say. -- Muhammed B. Yunus, M.D.

Dr. Paul Cheney found that in dual chromatography analyses, many CFIDS patients actually had more derangement of the brain, on a biochemical level, than Parkinson’s or Alzheimer’s patients.

Dr. Sheila Bastien, who studied a group of educated patients, was stunned to realize that patients who initially appeared very lucid had suffered tremendous drops in IQ.

Nobody has partaken in such a zealous barrage of metaphoric lampoons since the nineteenth century days of multiple sclerosis, which was called in its early years "hysterical paralysis".

The incidence of CFIDS is now higher than that of lung cancer, breast cancer or HIV infection in women.

It’s stupid to call it Chronic Fatigue Syndrome. It should be called the forever dead syndrome.–Keith Jarrett, jazz pianist and CFS patient

Dr. Mark Loveless, an infectious disease specialist and head of the CFS and AIDS Clinic at Oregon Health Sciences University, proclaimed that a CFIDS patient "feels every day significantly the same as an AIDS patient feels two months before death."

Dr. Daniel Peterson’s Medical Outcome Study revealed that no other set of patients had ever measured so poorly. CFIDS patients experienced greater "functional severity" than the studied patients with heart disease, virtually all types of cancer, and all other chronic illnesses.

This disease is actually more debilitating than just about any other kind of medical problem in the world. – Dr. Leonard Jason

When asked on CNN how many of his CFIDS patients had fully recovered in fifteen years, Dr. Peterson unequivocally and chillingly stated "None".

According to Dr. Komaroff, 4000+ research studies have identified objective physical/organic abnormalities in CFS patients

40% of CFS patients studied by a Chicago group were completely disabled by the disease. Nearly all of these said they had been denied Social Security benefits.

Many doctors have tried to find a causal link between CFS and personality traits that, in the case of any other illness, would be considered exemplary: blaming patients for having had a strong work ethic (calling them "overachievers") or exercising regularly (being "too driven").

Many medical disorders present as psychological disturbances. Pancreatic cancer can cause visual hallucinations. Adrenal tumors will cause behavior that can seem psychotic. So you have to be very careful not to accept psychiatric diagnoses at face value. – Sheila Bastien, Ph.D.

I remember thinking that if I were testing nothing but Alzheimer's patients, then I would say "This group isn't very impaired." But they were more impaired than the head concussion cases that I've tested that have been in litigation. ... And it looked worse than most of your average depressions. – Sheila Bastien, Ph.D.

There are many well accepted disorders that lack objective physical findings.  – Kevin P. White, M.D.

We have little understanding of disease mechanisms for many well accepted disorders, such as polymyalgia rheumatica, migraine headache, and trigeminal neuralgia. And we have very few effective treatments for disorders such as scleroderma and ankylosing spondylitis. Yet none of these disorders comes under the same intensely zealous scrutiny  ...   all symptoms are, by definition, subjective. – Kevin P. White, M.D.

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd. - Bertrand Russell

The apparently disinterested CDC essentially turned its back on the devastation in Incline Village and elsewhere. On a name change petition, Hillary J. Johnson, author of Osler's Web, commented that the name "Chronic Fatigue Syndrome" was selected "by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the Social Security Administration than about public health. Their deliberate intention –– based on the correspondence they exchanged over a period of months –– was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. The harm they have caused is surely one of the great tragedies of medicine. Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisible Illnesses, Katrina Berne, Ph.D., page 10

 Same book, page 13, David Bell, M.D., considers the word "fatigue" inappropriate since it is defined as a response to exertion that is relieved by rest, whereas CFS "fatigue" may result from little or no exertion and is not substantially relieved by rest. ...The CDC agreed to study the matter [of a name change] but later announced that the adoption of a new name is premature. In a catch-22, the present name trivializes the illness, thereby discouraging the research funding needed to uncover the pathophysiology of the disorder, which would help determine a more accurate name.

Nancy Klimas, M.D., at 11/3/06 CDC Press Conference: "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."