About Me

I am Jennie Spotila, and I fell ill with Chronic Fatigue Syndrome on October 6, 1994. I am disabled, and mostly housebound, but I have been active in writing about CFS and advocating for more research funding since the late 1990s. I served on the Board of Directors of The CFIDS Association of America from 2006 to 2011, and served as Chairman in 2008 and 2009. I have testified before the CFS Advisory Committee on multiple occasions, and I have given many media interviews about the illness. Occupy CFS is a blog about living with CFS, including the politics, research, medicine, and personal experiences. All the opinions expressed here (unless otherwise noted) are my own.

Questions? Email me at jspotila@yahoo.com

Please refrain from commenting on this page.

11 Responses to About Me

  1. Francesca says:

    Jennie, You are doing a great job… Is there somewhere I can write you in private? Francesca

  2. Pingback: Falling Behind and Flailing About: the NIH, P2P, Dr. Francis Collins and Chronic Fatigue Syndrome - Health Rising

  3. linda maust says:

    Interesting that I also fell ill with this in 1994, after having epstein barr and cytomeglia viruses. Exact date was April 19,1994.

  4. Rohit Agarwal says:

    Hi Jenni,

    My name is Rohit and Iam from India.

    Am fighting with this disease since past 5 years and really do not have an idea where to get medical and psycatric help. Its good to see that you are doing a real great job.

    Please advice where i can get more information on CFS.


  5. Prashanti says:

    I just found your site and read that you developed CFS in the fall of 1994!
    Amazingly that summer I was diagnosed and took a medical leave from teaching in the fall of 1994.

    I see someone else mentioned 1994. Was there something going on then?

    I have often wondered what caused it. I was previously an extremely active person. Here are some possibilities I have considered……any thoughts?
    1-In 1989 I had a serious car accident and near death experience. (I had to learn to walk again. It was actually a very spiritually uplifting experience….very very happy)
    2- Took meningitis vaccine before first trip to India in 1992
    3- Hormonal (perimenopausal) shifts
    4- Exposed to severe pollution and new diseases in India
    5- Took new malaria drug in India

    • Jennie Spotila says:

      Prashanti – people report a variety of triggers before developing ME/CFS. Exposure to something in India seems pretty likely in your case. In my case it was a sudden viral infection.

      • Julie Horowitz says:

        I got sick in 1989… got the flu and never recovered. I had vaccinations for a trip to Africa in 1987 and have always wondered if they played a role but the 2 year spread seemed too far apart.

        • Jennifer says:

          I had a host of vaccines to travel to Russia in 2011. In 2013 is when I got really sick and never recovered. Maybe there is some connection with the two year spread between vaccine and onset?

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