CFIDS Association of America Research Grant Recipients

Discussion in 'Fibromyalgia Main Forum' started by bjsmit1, Dec 3, 2008.

  1. bjsmit1

    bjsmit1 New Member

    The research that the CFIDS Association of America will be funding was just announced. For info on grant recipients, as well as the research they will be doing, with regard to CFS, please visit the following url:

    Brian Smith
  2. Forebearance

    Forebearance Member

    Thanks, Brian!

    I suppose this will be showing up as an e-mail to us CFIDS Assoc. members also.

  3. bjsmit1

    bjsmit1 New Member

    Yes, I think that is a very strong possibility ;-)

    I know I'm rather new here, but I just wanted to thank everyone who made this possible. If it weren't for the persistence, dedication, and generous support, this initiative would have never succeeded.

    As a patient who has been sick for nearly 14 years, this is extremely inspirational for myself, but more importantly for those that suffer who do not have a voice. I truly believe this might be the "tipping point" that we've all been waiting for...

    Thank you all,
    Brian Smith
  4. SpecialK82

    SpecialK82 New Member

    Hi Brian,

    I just read about the research projects and I'm thrilled. Thank you for your part in choosing the right research projects for us. I know the projects will be giving periodic reports to the Association of their progress, what is the best way for us to follow along?

    Out of curiousity, is the Association in contact with Whittemore Peterson Institute at all? I'm sure you probably already know this, but they have said that they will be isolating a new virus associated with CFS within a year.

    I'm wondering if it makes sense to share research findings with Whittemore as well - or is that type of thing already happening?

    Thanks again!

  5. SpecialK82

    SpecialK82 New Member

    Hey Brian,

    One additional question - I noticed that the total $$'s given to the 6 research projects is only $647,940. Are there still more projects to be announced or are the campain funds in excess of the $647,940 being held for other research?


  6. bjsmit1

    bjsmit1 New Member

    I'll try to answer your questions to the best of my ability.

    The CFIDS Association's Scientific Director has been in contact with over 500 researchers this year for the research campaign. Part of what she is so gifted at is forming collaborations among researchers, who would have never dreamed of working together. With that being said, I believe the folks at the Whittemore-Peterson Institute and Dr. Vernon have a healthy relationship -- like I said, when the RFA (Requests for Applications) were sent out in March, Dr. Vernon was in contact with over 500 researchers around the globe.

    As an aside, when Dr. Vernon was at the CDC, she lead the CFS Computational Challenge (C^3), which culminated with an unprecedented 14 papers being published in the scientific journal Pharmacogenomics before her departure from the CDC. She assembled teams with very eclectic backgrounds, and challenged them to look at data sets that had previously been studied by the CDC, and produce new results.

    I could be wrong, but I believe the Whittemore-Peterson Institute is studying HHV-8, which has been correlated to a type of cancer called Kaposi's sarcoma. I believe this is the virus that they're speaking of. Again, this is all speculation on my part from reading, etc. I don't speak for the CFIDS Association or Dr. Vernon.

    Again though, as I have said before, Dr. Vernon is absolutely brilliant, and in my opinion has transformed the landscape of CFS research. She has been, and will continue to "connect the dots" among researchers, which is just plain and simple, good science.

    I hope I've answered your questions -- I've had a long day, and my brain fog is pretty bad right now. I'll come back to this when I feel better.

    Thanks for the support.

    Also, I think the best way to stay up to date on the progress, is to sign up for the free CFIDSLink monthly e-newsletter. If you go to, there is a place to sign up for it on the home page.
  7. aftermath

    aftermath New Member


    I know that you do not speak for the organization as a whole. Still, there is one question I would like answered...

    Do you know if there any stipulation with the funding that the projects be completed in a timely fashion? I know that for some projects (e.g. Dr. Baraniuk's at G-Town), finding healthy controls can be a difficult thing.

    Still, it seems like a lot of ME/CFS research projects drag along for years without producing tangible results.
  8. bjsmit1

    bjsmit1 New Member

    From what I understand, there are timelines for each study. I'm sure that there will be some difference from study to study, but each project is expected to meet specific milestones within a specified time period.

    I hope that helps...
  9. stschn

    stschn New Member

    Thank you so much for what you have done and are doing. Aside from that if the new virus is HHV8 I sure hope the Valcyte and Valtrex that I and many others have been takeing for over a year will help with this one as well as the others it seems likely doesn't it.
  10. SpecialK82

    SpecialK82 New Member


    Thanks so much for you answers, I'm glad to hear that Dr. Vernon is interested in partnering with others. I surely would love to see all research findings public so everyone can work together and come up with a cure faster.

    I will sign up for the monthly e-newletter as you suggest to keep up-to-date on the progress.

    Out of curiousity, is it demanding on your time and energy to be on the Board of the Ass'n?

    Are there others on the Board with this illness or that have family members who are sick?

  11. bjsmit1

    bjsmit1 New Member

    Sorry for just getting back to this now -- I kind of got bogged down with holiday and health stuff, so I'm trying to get caught up with everything.

    Three of the grant recipients are in the NYC area, and will participate in extensive collaboration throughout their research. And all 6 recipients will be collaborating on some level as well.

    There are other individuals on the CFIDS Association's Board of Directors who are ill with CFIDS, as well as members who have family that are sick with CFIDS. With that being said, those that are sick tend to be toward the end of the symptom spectrum that allows for greater functioning (sometimes...)

    Finally, being on the Board can be very demanding of your time and energy, if you let it be. Honestly, I'm at a place where I'm too sick to do the whole 9 to 5 corporate America thing, and I love being able to help advance our collective cause, so the Board is a perfect fit for me right now. I have done a lot of hard work over the past 14 months, especially with helping to raise the $1 million for the research program, but I am just glad that I am in a place that allows me to "give back", as corny as that may sound...