Hi - No, this lawsuit was about the first two years of the long-term disability policy I had through my job, which basically covers 2014-2015,...
For the research nerds, here's a shot of the amount of bloodwork they did post-exercise challenge. It was a lot but thankfully the same IV worked...
Sixteen patients have completed visit one and two patients have finished visit two (so are done with the study). About the same number of healthy...
The entire second visit (which I completed last week) is dedicated to studying PEM. A week of pre-tests, an exercise challenge, and then a week of...
In 2015 and 2016, the group ME Advocacy expressed their misgivings by making a concerted effort to stop the NIH study before it began. They...
PACE was a trial of talk therapy and exercise. The intramural NIH study is a deep biological investigation. What's the comparison? Some people...
It seems unlikely someone would express a strong negative opinion on the internet, then call into NIH to express interest in volunteering, make it...
In the interest of transparency, here's my schedule from the recently completed second visit. A few items were added later (like an...
The first paper out will probably be from the researcher who led the focus groups on PEM. Twenty patients participated in a total of four phone...
Yes, on this trip I went with someone and she stayed at the Safra Family Lodge on campus. It's right across from the Clinical Center, so it's very...
I can't and don't speak for him but he's helping out on the deepest biological investigation of ME ever performed. He added skin and muscle...
One more thing I want to say about my time at NIH. The PI, Avi Nath, and other senior people at NINDS and in Building 1 (the NIH director's...
If I had any hint this study was not being done in good faith, I would have quit the study and raised holy hell. I used to work at NIH and know a...
Avindra Nath, principal investigator: https://irp.nih.gov/pi/avindra-nath Building 10-CRC, Room 7C103 10 Center Drive Bethesda, MD 20814...
Yes, thanks for clarifying. They want patients in for visit one before their 5-year illiversary.
Yes, the scientists working on the study have already learned a ton and they are going to learn much more when they compare the controls versus...
It's ok. The banding pattern was type 4, which is not diagnostic of any specific illness but it does happen in neurodegenerative diseases. So that...
Yes, they provide online access to all of the standard test results. The research stuff is not accessible - much of it will be run after samples...
International patients welcome in the NIH intramural ME/CFS study. Call/email Angelique Gavin: angelique.gavin@nih.gov and (301) 402-0880
NIH takes international patients for some studies. I just saw someone from Belgium who is in the undiagnosed patient program, for instance. I will...
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