Chronic Fatigue Syndrome (ME/CFS) Researcher And Patients Shine During NIH Call



By Cort Johnson in Health Rising.


It’s great the NIH is doing telebriefings a couple of times a year to inform the chronic fatigue syndrome (ME/CFS) community of their progress.  The calls can be more or less interesting. This one was definitely on the more interesting side.

NIH Intramural Study Proceeding on Pace

Nath reported that the NIH’s intramural study is proceeding on course.  The interest in participation in the week-long study has been strong with the group receiving hundreds of inquiries.  Eighty people (40 ME/CFS, 40 healthy controls) will go through the study. Thus far 26 people have participated (11 patients, 15 healthy controls).

The pace seems to have picked up a bit. In July Nath reported 10 participants had come through; four months later we’re up to 26, which is about one participant a week. Of the 11 patients, Nath stated that 6 were “adjudicated”, which apparently means passed through to the next phase of the study. (The study is in two parts – a week-long screening stay – followed by another week or so long stay.)

I asked whether the study was proceeding on the timeline and if we would hear anything before it’s over. Nath reported that the study is proceeding as expected – someone is at the hospital being tested every day.

Because patients actually stay at the hospital for two one-week stays, the overall timeline is hard to discern.  If everything works perfectly, the 40 patients, given the two week-long stays and the one hospital bed available, would take, if I have it right, 80 weeks. Penciling in a round of one-week stays for the healthy controls brings the total study time to somewhere around 120 weeks.


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