Hi - I'm nearing the end of week 2, visit 2 of the NIH study. Thought that I'd reiterate to the community that the study is still recruiting and still needs patients. To volunteer, contact patient coordinator Angelique Gavin (who is lovely):
angelique.gavin@nih.gov and
(301) 402-0880.
To reiterate the criteria: Patients must have had a sudden-onset illness and be within 5 years of the onset. The study is in all likelihood too intense for severe patients.
Lots of sub-studies have been added over the past year, since the study began, including skin and muscle biopsies and viral discovery in spinal fluid. I just donated 24 milliliters of it today, and two sterile, DNA and RNA-free vials with my "liquid gold" (in one doctor's words) were flash-frozen in liquid nitrogen and whisked away.
Visit one is a deep phenotyping visit: The volunteer is thoroughly assessed and other illnesses are ruled out. A five-doctor panel of outside ME experts then adjudicates the patient's file. If they are judged (unanimously) to have ME by CCC and Fukuda criteria, they are invited back for visit 2. Visit 2 includes a one-day exercise test (on a stationary bike), and five nights in metabolic chamber. They are assessing PEM quite thoroughly. It is fairly intense, and each patient needs to judge whether they can handle it. I am having a tough week but I'm doing a bit better than when I did a two-day exercise test three years ago for insurance purposes. So I'm grateful for that.
Volunteers will have travel paid by NIH and also receive a stipend for each visit. (About $600 for visit 1 and $1000 for visit 2). Each visit takes two weeks. Partners or family members are put up at a lodge on the NIH campus, which is very convenient to the Clinical Center, or at a nearby hotel.
Happy to answer questions on this thread. More details are available at the NIH ME/CFS site here:
https://mecfs.ctss.nih.gov/index.html
Brian