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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Gathering Anecdotes

Messages
14
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!