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Brooke

"To live is to be slowly born." – Antoine de Saint-Exupery

I am good at caring about people and truth.

Location
Iowa, United States
@aroundwthehound
Website
aroundwiththehound.com

Activity

  • Brooke replied to a comment by Jen Brea

    Raising Awareness About the Devastating Disease Your Doctor Has Never Heard of via magazine.good.is

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    Jen Brea5 months ago

    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/

    Brooke5 months ago

    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!

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  • Brooke commented on a link

    Raising Awareness About the Devastating Disease Your Doctor Has Never Heard of via magazine.good.is

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    Brooke5 months ago

    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

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