What Nancy Klimas said in 2010 about AIDS and Chronic Fatigue Syndrome
From the New York Times:
H.I.V. and Chronic Fatigue Syndrome
Q.
One thing I don’t notice here is comments by people with both H.I.V. and chronic fatigue syndrome. People with H.I.V. have long lived with the fear of not being able to speak openly of their difficulties. And medications are no picnic and no sure cure. People with H.I.V. have learned that, when you think you’re finally understood and supported, don’t be fooled — you’re not. You’re only feared and looked down on.
But living with C.F.S. and being in agony, losing everything else in life that meant anything — and also not being able to get any medical help or be understood about it — that really hurts worse. The two together must be a nightmare almost too unbearable to continue to live with.
Kim
Kim
A.
Dr. Klimas responds:
Interesting points. H.I.V. is a tough illness; I have cared for H.I.V. patients since 1983 and lost more than 1,000 to AIDS before the effective therapies came out in 1994.
Since then, most H.I.V./AIDS patients are in much better health, though they have suffered through the medical learning curve as we learned about common and rare drug toxicities, and the pharmaceutical industry developed easier treatment regimens requiring fewer pills. In 1994, our Veterans Administration H.I.V. in-patient unit averaged 38 full beds; right now, I have one patient in the hospital for H.I.V.-related problems.
H.I.V. and C.F.S. can coexist in an individual, but the combination does not meet the case definition for chronic fatigue syndrome, which requires the exclusion of coexisting illnesses that could explain fatigue. Still, I find myself providing consults on H.I.V. patients with profound fatigue — they are so uncommon that the local H.I.V. doctors refer them to my clinic. I can almost always find a cause for the profound fatigue. Reactivation of the cytomegalovirus, or CMV, infection is a common explanation, even in those who have excellent CD4 counts. Symptoms of fatigue in these patients may also be related to chronic active hepatitis.
If — and this is a big if — XMRV turns out to be a big player in C.F.S., one would expect 3 percent to 4 percent of the H.I.V. population to have the virus as well, and that would put them at risk of viral reactivation of XMRV. But, since many H.I.V. patients are on antiretroviral drugs and if some of those medications were also active against the XMRV virus, it might not actually result in a C.F.S.-like illness.
I raised the issue of case definitions above. Remember that when scientists define an illness, they do so to go after the group that has the illness, trying to exclude as many similar illnesses as possible.
Before we had a blood test to identify patients infected with H.I.V., for example, AIDS was defined as an illness affecting men 18 to 65 years old who had opportunistic infections. When H.I.V. was discovered and a reliable blood test to identify the virus was established, the case definition changed to include women and children, and doctors could define an asymptomatic H.I.V. illness. But it took that narrow initial circle to find a bug that caused the illness.
So while today’s C.F.S. case definition clearly will exclude some people with the illness, including those afflicted with other illnesses at the same time, it is meant as a research tool.
