lfac,


I agree and have written to MJFF twice and MJF himself once informing them that we were ready to collect information and asking what they might need. This isn't something that one does overnight - that I understand. I received a reply from Katie Hood, thanking me for reach out and asking that I keep in touch as we develop our project. It was taking shape almost exactly as theirs was..great minds. I'm not sorry they are doing it......but no patient participation is just not cool, not acceptable.

I called Bill Bell, from the Northwest PDF who had concerns of his own , gave plenty of word glue to help me from becoming "unglued." [my terminology ....truly i am interestingly medicated..]..i have so much i could say about how my mind works and the various connects and disconnects within my own flesh.

The fact that patients are not up to speed is easily manageable. Guidelines could be established to keep patients from asking irrelevant or unnecessary questions. Patients would need to follow these guidlines....or not be able to participate.

Bill asked about a patient forum where these people could go to get patient perspective. Well that is what we already are but even more so with what we are trying to develop. But professionals are not going to participate in ours when FOX is doing it and I don't blame them.

So - We could join their research project and read about the research discussion as permitted by MJFF and start am email listserve asking questions about the discussion that pertain to something that a patient could add information about. Researchers should be questioning patients all the time. Email would be after each discussion and assistants or grad students could be appointed to respond for the researchers if possible.

We could put together that global email database beginning immediately so that these discussions can be joined by as many pwp the world over. Discussions are held; we get to read them; we are given an email listerve method of communication that includes all in the discussion and ask questions throught the list. We expect to be answered.

by the way, Bill Bell is a good friend to pwp - there's no better. He will help us do this if he can.

paula