NIH Striving To Avoid False Hope In Chronic Fatigue

Scientist using a microscope


By Joyce Frieden, in, MedPage Today


BETHESDA, Md. — The National Institutes of Health is trying hard to bring real hope — not false hope — to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director Francis Collins, MD, PhD, said during an exclusive interview with MedPage Today.

“Five years ago … there was this big excitement that there was a retrovirus that was turning up in people with CFS, and initially it didn’t appear to be in people who were unaffected,” Collins said Friday during an interview at the NIH main campus, at which a communications staff member was present. “It was a funny retrovirus that had only been seen in cultured cells in the lab, and maybe in mice, [and it was] called XMRV.”

“It was really exciting because it was a retrovirus, and we have drugs for retroviruses! It got published in Science to great excitement, but then almost immediately other researchers looking at very similar patients said, ‘We don’t see this’ or maybe ‘We see it in people who don’t have the disease,'” he continued. “We mounted a careful multi-site study funded by NIH with blinded samples to try to see [whether] this [held] up and sadly, it did not. That was such a blow to a community of suffering people who thought, ‘Finally, they’re on to something.'”

Collins said he has been “greatly moved and troubled” by the stories of CFS patients, “especially when many of those stories start with people who are highly active, and many of them fairly athletic, and some illness that sounds viral, like a really bad flu, hits them, but they don’t get better … Many of them are unable to resume normal activities and end up bedridden for months or years.”


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