About Me

I am Jennie Spotila, and I fell ill with Myalgic Encephalomyelitis on October 6, 1994.

I am disabled, and mostly housebound, but I have been active in writing about ME/CFS and advocating for more research funding since the late 1990s. I served on the Board of Directors of The CFIDS Association of America (now the Solve ME/CFS Initiative) 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 disease. Occupy ME is a blog about the politics, research, medicine, and personal experience of life with ME.

My writing has also been published online by the Philadelphia Inquirer and STAT.

Questions? Email me at jspotila@yahoo.com

21 Responses to About Me

  1. Francesca says:

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

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  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?

  6. Don Gillard says:

    Hi Jennifer,

    I just wanted to say how surprised and happy I am to have stumbled into your site today, while doing some research.

    I am male in Canada and spent the first 3/4 of my life as an *extremely* high functioning and successful person. Then…well, you know the rest.

    Unhappily, I’ve gone from the above to a fundamentally isolated existence. Which is totally antithetical to my personality type.

    I’m looking forward to following your blog, as I already can see that it will help me to understand that perhaps I’m not as alone as I thought I was.



    • Jennie Spotila says:

      Welcome, Don! And you are definitely not alone. Don’t be afraid to comment, ask questions, etc. And you can sign up to get new posts by email as they are published by entering your email address at the top of the right hand nav bar.

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  9. jeremy says:

    hi jennie
    great advocacy work!
    has collins completely failed to live up to any of his many promises?
    he is resigning soon
    he tweets frenetically about all sorts of exciting nih projects and new iniatives, except of course CFS/ME.
    it looks like he has been stringing us along like all of his equally hopeless (when it comes to living up to their promises to ramp up CFS research) predecessors and colleagues at the various sub institutes of the nih.
    whats the current status update?

  10. Oh my goodness! Incredible article dude! Many thanks,
    However I am having troubles with your RSS. I don’t know the reason why I am unable to
    subscribe to it. Is there anyone else getting the same RSS issues?
    Anyone who knows the answer can you kindly respond?

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