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ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Expert Answers on Chronic Fatigue Syndrome
Wednesday 3 December 2009
The New York Times has an article in the form of a Q&A with Dr Nancy Klimas answering various questions about ME/CFS:
Denise Grady, a science writer for The New York Times, recently explored the link between a recently discovered virus called XMRV and chronic fatigue syndrome, in “Is a Virus the Cause of Fatigue Syndrome?” Here, Dr. Nancy G. Klimas, who serves on the board of the International Association for Chronic Fatigue Syndrome, responds to readers’ questions. Dr. Klimas is a director of the department of immunology of the University of Miami School of Medicine and director of research for clinical AIDS/H.I.V. research at the Miami Veterans Affairs Medical Center. See her earlier responses in “Readers Ask: A Virus Linked to Chronic Fatigue Syndrome” and Fred Friedberg’s responses to behavior-related questions in “Behavioral Treatments for Chronic Fatigue Syndrome.”
When Chronic Fatigue Syndrome Goes Undiagnosed
Q. Dr. Klimas,
Do you have any thoughts as to how many C.F.S. patients are under the radar because they were not eager to sign up for a “wastebasket” diagnosis, or otherwise frustrated out of the medical system early on?
There are many other labels that would be easier to deal with: chronic Lyme, depression, etc. What are the ramifications of an actual clinical diagnostic test for C.F.S. on the medical and patient communities? Can you foresee any possible unintended consequences?
Skeptic
A. Dr. Klimas responds:
Currently only 16 percent to 17 percent of the people with chronic fatigue syndrome whose symptoms are severe enough to meet the case definition for the illness have been diagnosed. Whether this is coming from the patient, as you suggest, or a medical community that does not know how or is reluctant to make the diagnosis is less clear.
Leonard Jason’s group in Chicago has done studies with health care providers and shown that the clinicians most likely to be familiar with the disease are those with a family member who is ill. He also did a study showing that the name “chronic fatigue syndrome” influences a physician’s sense of illness severity. When the same constellation of symptoms were give other names, providers in a study responded that the illness was a more serious health problem than C.F.S.
To hear more from Dr. Jason, see this interview, “Learning Firsthand About Chronic Fatigue Syndrome,” in the Times Health Guide.
Can Vaccines Set Off Chronic Fatigue Syndrome?
Q. I often felt that I was on my last day with C.F.S. but have been fortunate enough to have long remissions. I was diagnosed with C.F.S. in Los Angeles in the ’80s. However, in 1995, I was given the newest polio vaccine to go to Turkey, and within six weeks was deathly ill. I had lost my cognitive skills slowly, forgetting what city I was living in, where my job was, what floor it was on, what account I was working on. I couldn’t read as the words and font changed. Driving meant possible crashes. Walking was like severe vertigo. Pain felt like punches and deep wounds and the fatigue was mono on steroids.
I go into this wondering whether the polio vaccine exacerbated the virus. I see postings about C.F.S. and the polio vaccine on Google, but was wondering whether anybody else has had these experiences. I have recently gone into a new relapse after a long remission (gratefully), and now I’m angry. Hurry please — the one and only doctor in Toronto who deals with this illness is taking no new patients. I’m alone and looking like a bit of a hypochondriac.
LJC
A. Dr. Klimas responds:
Over the years I have seen a number of individuals who have developed chronic fatigue syndrome after receiving a vaccine, most frequently the hepatitis vaccine, yet the vaccine safety studies have not noted enough cases for the link to be statistically significant. Some researchers have also examined a possible link between vaccines and Gulf War Illness, a C.F.S.-like ailment observed in those returning from the Gulf war in the early ’90s. That link has been difficult to prove one way or another, as the military no longer vaccinates troops with such a large number of vaccines at one time.
So while I can theorize, as an immunologist, that a person predisposed to chronic fatigue syndrome who is exposed to a big enough immunologic kick could start an immune-mediated process, like autoimmunity, or reactivate a virus or viruses, we haven’t the proof. Still, when I hear your story, it makes me think that we simply don’t know enough yet.
You can read the full article here.
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