Tom Jarrett, ME Patient Advocate, Passes



It is with very heavy hearts that we report the passing of our friend and fellow ME advocate, Tom Jarrett.

Tom came to MEadvocacy in the fall of 2014 looking for help with a protest against the Pathways to Prevention Workshop (P2P) at the National Institutes of Health (NIH). Despite being in constant pain and needing to lay in a zero gravity recliner, Tom organized on very short notice an awareness event, traveling 10+ hours to protest at the NIH, with himself, church and family members, including his wife and two young boys, in attendance. It was a very cold winter day. A cameraman from the documentary, “Canary in a Coalmine” stopped by to film.

Tom stayed on with MEadvocacy for awhile after that helping out as he was able. It was a pleasure to get to know such a kind, thoughtful and passionate soul, and to see how his family and church supported him. Eventually though, the pain became too much, and he resigned to concentrate on a new distant doctor and new treatment.

Unfortunately, the treatments weren’t successful, and the years of unrelenting pain led him to take his own life. He leaves his wife and two young sons.

Visitation will be held Thursday, July 28 from 4-7 pm with the funeral service Friday, July 29 at 10 am at Zionsville Fellowship, 9090 W Oak Street, Zionsville, IN  46077.


In lieu of flowers, contributions can be made to:

Trust Fund for Austin & Andrew

Checks payable to "Trust Fund for Austin and Andrew Jarrett"

Mailed to c/o College Park Compassion Ministries, 2606 West 96th Street, Indianapolis, IN  46268


ME Research - End ME/CFS Project


Articles, Photos and Videos:

Tom and Louis Zamperini:

Tom and the Know ME Challenge:

MEadvocacy blogs:

Onward Through the Fog blog:

Photos from the P2P Protest


Showing 4 reactions

  • Anita Roddam
    commented 2016-12-15 08:58:25 -0500
    I am wordless with sorrow at the tragedy we see here.
    After 37 years of living with Severe and Profound M?E here is my wordless statement. (2.5 minute video)

    Anita Roddam M.E Veteran
  • Christina Cooper
    commented 2016-10-29 19:43:10 -0400
    My prayers go out to our heavenly father to comfort your wife, sons, family and friends. ME is such a shocking and treacherous disease stripping us of all dignity and finally hope! I took courage from your messages and your strength as you fought to open the world’s eyes to this disease and hopefully find a cure- you were a true warrior! In my darkest hours I’ve heard the same voices crying out from deep within my soul, “the only way you can escape this pain is to get out of this body”. Only because of that, do I understand to some degree, your choice in that fateful moment as your mind danced with the desire of not wanting to be dead, yet desperately seeking relief! I know you now have finally found peace in our fathers arms where there is no more suffering or pain. Rest in peace.
  • Fern M.
    commented 2016-07-29 11:28:33 -0400
    Another victim. Another life. Another death. Another family devastated. My heart, and many others, has sustained many deaths. We witness so much suffering. So sorry for Tom’s family, friends, advocates. Yes, Tom, you are resting easy now. We all will carry on as best as we can to get the work done.
  • Rivka Solomon
    commented 2016-07-27 17:55:38 -0400
    Hearing about Tom’s passing and what must have been his utter lack of hope on ending his pain and suffering just tears into my soul. I am devastated. He was a really really good man. It was a pleasure to be in contact with him regarding the NIH demonstration he and his family led and then again on the demos just a few months ago. He said he had gone way down hill and was now very very weak. Thank you, Tom, for all you did to try to change our situation. You are one of the good ones. Please rest easy now, my friend. We will carry on with the work you did, and we will make change happen because we must. Because we can’t lose any more of our friends to this terrible epidemic. MEAdvocacy, thank you for telling us about this, as deeply disturbing as it is. — Rivka