By Joyce Frieden, News Editor, MedPage Today,
NIH Striving to Avoid False Hope in Chronic Fatigue
Director Francis Collins, MD, PhD, talks about his agency's priorities
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.”
In September, NIH awarded $7 million in grants to three clinical centers and a data coordination center to continue ME/CFS research. “Some people have said, ‘Your three centers are all doing the same things,'” he added. “Yeah, that's intentional; we want to see immediately if something looks like it's promising, is it promising really, or another false positive? We've had too many of those and we don't want to make that mistake again.”
In addition, “I moved the program out of the place it was at NIH, which was at the Office of Research on Women's Health,” he said. “It is true that women are affected more than men, but that was seen as not a particularly important place for an important disease to be.”
Collins asked Walter Koroshetz, MD, director of the National Institute of Neurological Disorders and Stroke (NINDS), to head up the NIH's research effort, and NINDS senior investigator Avi Nath, MD, “to start a protocol in our clinical center to bring people with this disease for an intense 1 or 2 weeks of just looking at every possible cause. And that's led to a big uptick in the amount of research that's going on.”
Although the medical community has been criticized for not taking ME/CFS seriously, “it's very hard for me to see how [that criticism is] fair when you hear stories of people who've gone rather suddenly from a full life to bedridden status — something dramatic happened there,” said Collins.
He added, however, that “there are problems [in that] CFS has become such a blurry diagnosis, that in there amongst hundreds of thousands or millions of people who carry that diagnosis is a whole heterogeneous group and there may be individuals … who have something else entirely or even people who are suffering from depression and are therefore feeling fatigue for that [reason]. I think that's added to the difficulty that the medical care system has had coming to grips with this as a real disease that has a desperate need for new treatments.”
You can read the full interview with Francis Collins – which included non-ME/CFS comment relating to cancer, commercial partners, and precision medicine initiatives – by visiting the MedPage Today website.
” “It is true that women are affected more than men, but that was seen as not a particularly important place for an important disease to be.””
More women may be affected than me, but women are not affected “more” than men. Us men have equal difficulties with this disease. This isn’t a woman’s health issue, it’s a health issue.