They are collecting data at a rate of 1 patient a week if I am not mistaken and they have just started. Then they have to process all the samples, and performa analysis of the data. We are likely 2 years away from publication. This is an estimate from my point of view and I may be wrong.
Probably not @Tuha since this is the way science works, and in most cases scientists do not discuss their results before publication. However we have other teams working hard, and we should expect publication from the Davis group by the end of the year, and results from the Norway study by early next year. And I am sure there are others who have something in the works.
Today I asked one of the researchers about timeline and he said they'll be releasing results as the study goes along. That is, they don't plan to wait until the very end to start publishing. The first stuff out will probably be the animal model they're attempting to develop. The brains-in-a-dish experiment (blood cells turned into neurons) could also be early out of the gate. Maybe in a year or so, but who knows. If any of the 30 or so scientists working on the study finds stark early findings, they may be eager to get it out sooner. I am convinced this is not business-as-usual at NIH. Avi Nath had to make a split-second decision when Collins asked him to be PI during a meeting. And then Collins gave him a month to put a protocol together. I would not be surprised if that is some kind of NIH record outside of emergency protocols like Ebola. Intramural protocols can often take 6 months to a year or more to come together.
Yaaay! It is wonderful to get information as it develops! This actually seems like a kindness they are doing us. Please tell them, "thank you" from me. And thank you, again for giving us updates, @viggster, I really appreciate it.
In regards to use of mass spectrometry on CSF samples, I was told they are going to wait until they have collected all samples then run them as a batch. My guess is that it will take them at least 80 weeks. Part 2 of the study will not even begin until 6 months from March of 2017. Overall, I think it's difficult to predict which part of intramural study will uncover interesting pattern that is unique to ME/CSF patients. Dr Nath also mentioned the most difficult part of CSF study is data analysis portion.
Certainly. I've been trying to think of other ways to communicate about the study and how to get the word to as many patients as possible. Look for articles in the next few days on national news sites. And the team is being very open about everything they're doing. They're now talking with Staci Stevens and I gave NIH my data from the 2-day CPET I did with her. This is a big positive sign IMO. When Dr. Collins came to talk to me he wanted to know how the patient community felt about the study. I told him I didn't have any surveys, and that the early communications problems reinforced decades of mistrust, but that I had also heard hopeful messages from many patients.
You have just revealed that you have no idea how NIH external funding works. The NIH Director does not "pull the strings" when it comes to the thousands of grants the agency gives out every year. Every of the 30 or so institutes at NIH has a director and a big bureaucracy, and review panels, and special emphasis panels, and executive committees, and on and on and on. The idea that one man controls a $30 billion budget where tens of thousands of grant decisions are made every year is ludicrous. The only money Collins directly controls is called the Directors' Budget (or something like that) and he gave funds from that pool to the new RFAs.
Just saw this..
http://krvs.org/post/nih-study-aims-unravel-illness-known-chronic-fatigue-syndrome
Bravo Brian for getting the word out and sharing your story.
The slow pace is extremely frustrating, I hear you there. I think there should be concurrent clinical trials with Rituximab and other drugs going on with this observational study. It's so hard to bootstrap research capacity. The Congressional action day coming up on May 17th in DC could help, but it's hard to get Congress to earmark funds and direct NIH to do certain things with such a small and scattered advocacy movement.
