A few quick hit NIH updates, all drawn from the website for the Clinical Care study:
The consent form for the study has been posted. Of note, people with depression, anxiety, etc. are excluded if their symptoms are not well-controlled on medication. In addition, drugs that may make you ineligible may include pain and sleep medications, steroids, and biologic immune modifying agents. The consent form provides a description of all the testing involved in the study, including the exercise test.
The Workwell Foundation announced that NIH was conducting a focus group on post-exertional malaise. The consent form for that focus group is also available. NIH plans to conduct a small group discussion of patients’ experiences of post-exertional malaise to help them create a questionnaire for the study.
Dr. Avi Nath is leading an ME/CFS Special Interest Group at NIH. The website says, “The ME/CFS SIG seeks to provide a forum in which to disseminate and discuss clinical and scientific information about ME/CFS. It is open to all interested intramural and extramural investigators seeking to learn more about ME/CFS and hopes to foster new research collaborations across the NIH campus.” As Dr. Nath had promised, outside experts in ME/CFS are brought in to give talks to the research team. To date, those speakers have been Dr. Anthony Komaroff, Dr. Leonard Jason, Dr. Daniel Peterson, and Staci Stevens and Dr. Mark Van Ness.