In gratitude

I have been given the incredible opportunity to chair the newly forming Clinical Advisory Board for the WPI. This group will interface with a Scientific Advisory Board to interpret the unfolding science for medical purposes. It promises to be an unprecedented fusion of diverse talent. The WPI is committed to sharing any clinically relevant scientific information that may advance our current approach to the disease. Patients need meaningful treatment now, not in a few years. From my perspective as a patient, progress seems excruciatingly slow, but I am hopeful that we can bridge the gap from the lab to the clinic and bypass years of avoidable suffering. All options must be considered, no stone left unturned. Sooner rather than later.

I am traveling to Reno this week in an attempt to fill my knowledge gap of the lab science and brainstorm where to go from here. I think the future looks brighter than it has in a very long time. I have to believe that if I have recovered enough for productivity, others can too. Returning to function is still a process for me, not a done deal, but the progress I’ve made is beginning to yield tangible dividends. Our own descent into hell and return to a life that is worth living has created an urgency in me to help find the answers. Those answers are closer than they have ever been.

I am filled with gratitude to the WPI for the considerable quality of life improvement that my family has already experienced as a direct result of their work. I will never be able to repay my debt adequately, but I will try.

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38 thoughts on “In gratitude

  1. >This is terrific news! Congratulations, Jamie. I can't think of a better choice for chairing this board.

  2. >Thank you Dr. Jamie and all the best with your new endeavors. What a team, you and WPI!! I look forward to your success in carving out a new way for us to heal. You who have gone before us…hope you can help bring us to the other side as well! I hope that made sense, I hope you know what i'm saying…just so glad you're up to productivity again. It gives me hope! All my love to you, Dr Judy and everyone at WPI.

  3. >I also couldn't think of anyone better to head a board aimed at bridging new research and the uncharted territory of treating ME/CFS patients in a post-XMRV landscape.

    Also, on a personal level, thank you for teaching us to filter out the noise, the naysayers, & the negativity and utilizing your precious energy on such constructive ends. Many patients respect you a patient/researcher/physician, but many of us can also learn from the person.

  4. >Congratulations, Dr. Deckoff-Jones. I don't think WPI could have found a better person to be Chair of their Clinical Advisory Committee. You know this disease is and you are truly seeking treatment and cure. You will be a great asset to WPI.

    Patricia Carter
    XMRV+, 24 years ME

  5. >What a wonderful holiday gift to us all to have you Chairing the Clinical Advisory Board! Perfect. Thank you!!

  6. >Congratulations Dr. Deckoff-Jones! This is wonderful news. WPI couldn't have picked a better Chair for the Clinical Advisory Board! Your experience as a patient and your clinical knowledge certainly will be an asset for all. Thank-you!!!

  7. >Jamie, Wow! This is wonderful. And besides your knowledge and skills you bring the understanding that we need treatments now, not after another decade of go slow, foot dragging research; that there are treatments already available that can help so very many sick people and that can happen before all the dots are connected regarding the specific mechanisms that underlie ME/CFS (and my biggest wish for the New Year is that it will see the death of that name)and retroviruses


  8. >This gives me reasons to be optimistic! Wishing you the best of luck with this challenging new position. Thank you for all your efforts.

  9. >I'm so happy to hear you're doing this. Thank you so much for all your work on the behalf of this community.

    Best, Lisa

  10. >it's almost like fate, isn't it? there haven't been many things lately that moved me to smiles and wonder at the same time, but this saga is definitely one of them. i've been sick for so long, i forgot there were so many of us out here. here's hoping we can all look forward to a restoration of lifetimes of work and play.

  11. >I was thrilled to hear that you will be chair and have gained enough health to do so. WPI continues to put patients first and make meaningful plans for their future and ours. Thank you so much for all you do Jamie.

  12. >And I should have mentioned — please let us know what, if anything, any of us can do to help.

  13. >This is wonderful news! Thank you for accepting this position and being a pioneer for us all with your treatment. Please take good care as you forge ahead.

  14. >Congratulations Jamie! What a wonderful opportunity for you! It's so great that you've gotten to the point where you can do this!


  15. >This is great news! Anything that will move forward the treatment protocol for all of us who are suffering, I am all for it! Best Wishes Dr. Jamie and WPI for continued success. 24 years for me and many people I have met through these forums and info. sites. I never thought I would see this happen in my lifetime! God Bless!

  16. >Congratulations, Dr. Jamie!! And thank you for the wonderful Christmas gift in the form of this incredible news! I can't think of anything else that would bring a sigh of relief and Hope for so many! We trust your personal experience with this disease to lead the way for treatments for those of us with this disease. Let's not let another generation suffer! :)

    Lisa Kitzmiller

  17. >What a dynamic team – Dr Judy and you!!! We've really got great people on our side now. Go well, Dr Deckoff Jones!!

  18. >Good for you and the WPI. I trust you will try to bypass all unnecessary sequential steps with necessary urgency. It's been 40 years of ME/CFS so far for me.

  19. >I would love to jump for joy if I was able!!! This has made my day and given me more hope.

    Thank you Dr. Jamie.

  20. >Wow! Great news doc, but please take care of your new and fragile health. We couldn't ask for someone better!

  21. >Yes, please take good care of yourself!

    For many selfish and personal reasons, I want you to continue to get better and to retain the level of functioning you have attained.

    Now that we know these ARVs work for at least you, Ali, Dr Michael Snyderman and Ms. "X" from Dr Luckett's blog, we need to get to clinical trials asap.

    After 29 years of ME/CFS, I certainly don't think there is any risk to me that is worse than waiting to deteriorate further. I hope you and Dr M will be able to give other brave physicians the confidence to try these treatments on anyone it seems suitable for.

    This is the best Christmas present I have EVER had!

    Take good care of yourself and make Dr Judy take care of herself, too!

    Congratulations and Best Wishes!

  22. >CONGRATULATIONS!!! To you and to all of us who are trapped in the world of ME/CFS. All of us who follow your blog know we have a passionate advocate on our side.

  23. >the stars are lining up. (jamie and judy are our stars!) now we need to push and push and push for CLINICAL TRIALS NOW.

  24. >This is the best news I have had in 22 years of illness, and now MG added to the list. I hope with NASH I can take the meds!

    The WPI is continuing on its path of making sure the best are on the Team…that's you, Dr. Jamie.

    Go well, be well, do well, make US well.

  25. >Congrats on your assignment!I am ROOTING for you and Ali! Awesome and Awe Inspiring…….

  26. >Thank you for working for the cure. Too many people don't believe WPI. Too bad……that thinking is slowing us down. July 4, 1982 I entered this hell and now 28 years later and turning 67 next month I am beat. Dr. Jamie, I know you can make the difference for us. I see Klimas at U of Miami and although I left my blood last summer I don't think anything was done with it. I am so anxious to get treated. So, I will be praying for you to keep getting better and prove the treatment works.
    Good Luck and continue healing.
    Sheila DeRuzza

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