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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, before the NIH study began. I did a two-day CPET, had a qEEG with Mark & Marcie Zinn, and did a bunch of other stuff detailed in the judge's opinion...

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 for most of it. :speechless:

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 controls have been run.

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 timed repeat tests. The design was put in place after NIH listened to a patient PEM focus group. At set points after the exercise test, a researcher...

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 circulated a petition calling for its end and took other actions. Vicky Whittemore, who has nothing to do with the intramural study, took the brunt of a lot...

PACE was a trial of talk therapy and exercise. The intramural NIH study is a deep biological investigation. What's the comparison? Some people like to throw bombs with dumb hashtags and are still living in 1986. They also haven't spent time at NIH in the study. So, yes, a small faction of...

It seems unlikely someone would express a strong negative opinion on the internet, then call into NIH to express interest in volunteering, make it through a screening interview, and then decide not to participate based on previously stated strong negative opinion. Plenty of people have contacted...

In the interest of transparency, here's my schedule from the recently completed second visit. A few items were added later (like an echocardiogram), but this reflects most of what the visit entailed.

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 calls, and those discussions helped guide the design of the second visit of the study (which is explicitly studying PEM after an exercise challenge)...

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 convenient. I spent weekends at the lodge and the weekdays overnight in the Clinical Center. The lodge is really lovely - only about 12 years old...

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 biopsies and natural killer cell studies and spinal fluid pathogen studies to the protocol recently. The PI, Avi Nath, has final say over data...

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 office) know about the history in the 1980s of Stephen Strauss squashing NIH research on ME. They have acknowledged to me and others that he was a bad actor...

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 lot of people around the place. Francis Collins visited me last year. I have many avenues with which to raise concerns and I would use them if I felt...

Avindra Nath, principal investigator: https://irp.nih.gov/pi/avindra-nath Building 10-CRC, Room 7C103 10 Center Drive Bethesda, MD 20814 301-496-1561 natha@mail.nih.gov Brian Walitt, lead clinical investigator: Building 10, Room 2-1341 10 Center Drive Bethesda, MD 20892 301-827-0117...

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 the patients. They are investing years of their career in this study. Their motivation is to learn, and it's ignorant to suggest otherwise.

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 finding is quite worrisome. Does anyone know if other ME patients have had oligoclonal bands in spinal fluid? Protein looked fine. One white blood...

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 from all the volunteers are collected and pooled, e.g. the immune analysis of spinal fluid (they're looking at a few thousand proteins in CSF). They...

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 ask the patient coordinator. She did see a bump in contacts this past week, so I think the postings here, on PR, twitter, etc. did help.