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  • kkburroughs

    I am so thankful for this article! I have had ME/CFS for 18 years! I was a personal trainer and bodybuilder when one day I came home feeling badly and could not make it up the stairs to my bedroom! From fit, ultra fit actually, to bedridden in a few days time. I never worked out again. It's been tough and part of the difficulty is the lack of awareness by doctors as well as family! Chronic Fatigue Syndrome is hardly what this illness is about. Neurological symptoms are frightening as well as difficult to treat. Please, please learn and be an advocate for us! We don't have the energy to fight ourselves!

  • Sarimá Gracia

    Suffering from Adrenal Failure. Going the natural route. Good days, Bad days…Never Great days anymore. Glad to see a voice being raised about this horrendous, debilitating silent disease. Donating now! Thanks from the bottom of my soul!

  • Bruce Weaver

    Anyone notice Howard Bloom is appearing in this documentary? Cool dude. Google him.
    Great project and Im sure more questions than answers. I tend to shy away from anything called a syndrome. Reality is we are all getting sicker and sicker. Maybe it just from years and years and years of creating with Toxic and Poisonous materials?

  • Brendan Howley

    Hi Jen
    I'm a former CBCTV investigative documentary filmmaker who discovered MECFS after the suicides of some 8 Canadian Forces soldiers after Gulf War I and am writing a book for Random House on neuroplasticity because of this work. My dayjob is all about brand marketing communications/ethical PR/microfinance. I'd be happy to help your project pro bono any way you'd like. http://www.linkedin.com/profile/view?id=9229347
    cheers/all best/brendan

  • Sean Pook

    Hi Jen, have you tried seeing how diet affects your condition? Try giving up grains, dairy, and legumes for 30 days and see how you feel. My wife had ME and I had something similar only find out that food related autoimmune responses were causing our symptoms. Best of luck

  • Precious Pain

    23 years... Can it really be? People are finally hearing this is REAL!!! Thank you times a million Jen Brea. Thank you for your courage and strength that you pay double or triple for, with every task you attempt. I know what that feels like. You have given me hope.

  • Jen Brea

    Hi Brooke. Yes, this is that film. There are some folks who would like us to exclude every patient or researcher who has ever used the term "CFS." Or edit out every mention of the word. I do not think that is right or realistic. As long as we, in both the narrative and in our animated "explainer" sequences, do a good job of telling the history of ME (much older than CFS!), the difference between ME and CFS, etc., then I think everything will be in the end, quite clear--more clear than if we had tried to hide the mess. Much more important than presenting a too-neat version of reality is to give people the context and the critical lens through which to discern and come to their own conclusions about the truth.

    You can read more about my understanding of the illness here: http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/

    • Brooke

      Thank you for the clarification, Jen! I agree that it is more important to explain the difference between CFS and ME and how most CFS patients don't have ME, etc than to create a film where the term CFS isn't used at all. In fact, I think any thorough film about ME needs to do that, although I also believe that can and should be done without allowing misuse of the term CFS in the film. I am desperately hoping those being interviewed will be asked to use the correct term, ME, in the film so as to preclude confusion, because allowing them to do otherwise would contradict the truth about it being a whole different diagnosis. I am glad you at least understand the difference and plan to explain it in the film. I will gladly offer some financial support knowing this, and keep my fingers crossed that this film is indeed careful about how interviewees and doctors use terminology in order to represent this illness correctly. Thank you for putting sooo much of your limited energy into raising awareness through this film. I know you must be paying a terrible price physically, and I want you to know it is recognized and appreciated for the sacrifice that it is. Best of luck as you move forward!

  • Brooke

    Thank you sooo much for doing this! As someone receiving hospice care at home due to a life threatening case of ME, I would love to support your film, but I need to know one thing. Your article here makes it clear you are aware that most people (studies show more than 90%) diagnosed with CFS do not have ME, but I read elsewhere that you will allow some in the film to use the term CFS interchangeably with ME. This breaks my heart, since I strongly believe they are two very different diagnoses. I am hoping you will take time to explain the difference in the film, share the statistics so that awareness can finally be spread that CFS is not ME. Otherwise, you'll get thousands of people with CFS sharing the film as though it's about them when it's not, family members and doctors seeing the film and writing it off because it does not accurately describe the experience of the CFS patients they know, etc. People with ME desperately need a film all our own, one where the distinction is clearly made between true ME (as defined by the International Consensus Criteria) and CFS (the latter of which I strongly believe can only ever be a misdiagnosis). Will this finally be that film? I would deeply appreciate a reply. I'd love to get excited about and support this film, but am nervous about the use of the CFS mis-label in its interviews. Here's a page with more info and references about why CFS isn't just a crappy name or something we exist as a subset of, but a completely different diagnosis altogether. Thanks! http://www.hfme.org/misdiagnosis.htm

  • jordanruden

    This is such a critical issue and a completely neglected disease. I came down with ME/CFS when I was the Head of Production at GOOD.is nearly two years ago. This is more common than most people think. My story is very similar and you see these same patterns time and time again. Wishing best of luck to Jen Brea and looking forward to discussing more.

  • Michelle Heathers

    Thanks for sharing about something that affects many people -- and many of them do not even know it because their doc isn't diagnosing them correctly! We need more people like you, Jen. Thanks!

  • Alessandra Rizzotti

    I have a friend who has been diagnosed with CFS, but she's still trying to figure out what can help her. She's tried various things with diet, and holistic approaches but nothing seems to help. Thanks for sharing your story. I shared it with her. I'm wondering if you have plans to reach out to other people who have been diagnosed with CFS and create an online community of sorts where people can share stories?

    • Cathy Caplener

      Ugh. We all learn that we are the only ones who know our body. I think the idea of starting a support group/community will help tremendously. Share the stories, get support. You are not alone. And hearing this does not help much I am sure many times when you feel like you are in the dark and alone. But keep reaching out. This is a great platform to do so. Build a tribe. Find some leaders who can help you and others who are facing the same issue. Big hugs. But continue to listen to YOU. And have compassion for yourself.