REPOSTED FROM 2010: The subject presents a uniquely 21st century scenario, in which a single scientific paper drops and researchers and the disease community react in very different ways.
Scientists see the paper as an invitation to question – are the findings true? What does it mean?
Many in disease communities, hoping for answers and looking for action, often move more swiftly. Even the comments on yesterday's invitation to join us in conversation hint at the questions.
In the fall of 2009 Last fall, researchers made a big announcement for sufferers of chronic fatigue syndrome, or CFS. They had examined the blood of 101 patients and 218 healthy people -- and found more than half of the people with CFS had evidence of a retrovirus known as XMRV. Only 8 of the healthy people did.
If true, the finding suggested a possible cause of CFS, and a first step toward a treatment and a vaccine.
What happened next is a study in contrasts. The scientific community went to work to verify the original findings, and five teams came up empty. Deliberative and requiring replication before any finding is accepted, the scientists continue to work, and to make cautious statements about how we do not know whether XMRV has anything to do with CFS yet.
But some in the CFS disease community, active online, are taking action. Some have already renamed their disease, replacing “chronic fatigue syndrome” with “XAND” – X-associated neuroimmune disease. Some are getting tested for the retrovirus, and posting their test results on message boards. Some are taking toxic antiretrovirals intended for people with HIV, and blogging about their experiences.
Replay the livechat:
Wednesday livechat on Chronic Fatigue Syndrome
-- Trine Tsouderos and James Janega
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