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I participated in this study and very much agree with Brian Vastag's opinions here. Thank you for participating and speaking out about this important study. We will make progress together!

Dr. Walitt was definitely there for both of my study visits (November 2018 and April 2019). I have great respect for him and felt truly cared for by Dr. Walitt and the staff.

This is only the first step. From my conversations while participating in the study as a patient, as long as they find useful data, they would try to study other sub-groups later on, such as more severe patients, etc.

The NIH is many people and many groups. I don't think we can lump them all together saying "they" want to or don't want to help. From my experience as a patient in this study, I felt that the people involved in the study that I met definitely wanted to move us forward and be as helpful as...

I am pretty sure Dr. Walitt goes over all of these numbers, including how many did not respond after being invited, in his talk at the ME/CFS conference at the NIH in April 2019. If someone was interested in those exact numbers, you could look up the video recording and Dr. Walitt's talk.

I just joined this forum and am the author of those two articles linked to above. I would be glad to answer any questions anyone may have.

Yes, I only did the assessment once and mentioned my concerns once. It was taken care of as swiftly as possible, and it's really not that easy to get those kinds of higher level meetings that fast. I was honestly quite impressed with how it was handled.

This is exactly why I felt like I needed to tell patients about this experience. I know many doubt the NIH's true intentions, but the NIH is not one person or group, and with this group of people working on this current study, I came away feeling truly cared for and about. So, I wanted patients...