1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Gathering Anecdotes

Discussion in 'General ME/CFS Discussion' started by KGBmi, Jul 30, 2012.

  1. KGBmi

    KGBmi

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    Hi, I am going to be walking across the state of Michigan to raise money for the research fund of the CFIDS Association of America (I've posted in a few other places about this). I’m going to be setting up a web site soon, and would like to set up a page on that site with a few personal stories - just short personal anecdotes and a picture for each person - from people who have been afflicted with CFS. I would like to get as diverse a selection of people as possible. In my encounters with other CFS patients and in meetings with a local advocacy group, I’ve found that almost all the people I’ve met have been white women aged 40-55. I have nothing against featuring some stories from people who come from that demographic, but I would like to have diversity on my page - I want to show people that CFS can and does affect people from all walks of life. If you're interested in sharing your story, please reply to this forum. I would love to take everyones’ story, but I can’t without risking losing peoples’ (nowadays very short!) attention spans. I am particularly interested in anecdotes from people who are non-white, male, very ill, in recovery, below or above that 40-55 age range, and/or have something that might distinguish them in peoples' memory . . . like “I was about to get married/sign with the Dallas Cowboys/expand my multi-million dollar business, but then I got CFS.”

    Thanks, and I look forward to hearing from people! Just please post a little info about yourself if you’re interested and believe you represent the diversity of the ME/CFS community! Even if you are female, white, and between the ages of 40-55, feel free to post if you are so compelled!

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