Chronic Fatigue Syndrome gets a Make-Over

This is a win, although maybe not the resounding victory to appease each and every CFS/ME/SEID patient (wow, typing that’s going to get old, real quick!), it does make a lot better case for disability claims that have been denied in the past, and for our doctors to try to understand our condition from a different perspective than the one they have been employing for so long.
I’m glad they took the number of requirements for diagnosis and lowered them to include only things that are common to almost every CFS patient, and a short, short list at that, including PEM or post-exertional malaise! Hopefully this name and criteria change will also help primary care physicians make an accurate, much more timely diagnosis, instead of forcing us to languish unacknowledged, in misery, blaming ourselves for our reactions to movement and exercise and thinking it’s all in our heads.
Though only time will tell, I think this is a jump forward for patients and advocates of CFS/ME/SEID, and one that will propel more research, more understanding, and more accurate and less harmful treatments.

A resounding thanks to aBodyofHope for writing this one, I tired myself out just reading all the mini reports and interviews and advocate responses, and wouldn’t have been able to compile this much information in any kind of way, much-less this organized, for at least a week. You are awesome girl! A seriously inspiration, and not just to myself by any means!!! Thank you for spreading knowledge and compassion. I hope that more and more of that knowledge and compassion begins to be reflected back your way from those around you, particularly in the medical field since I know your family is supportive and warm. ❤

aBodyofHope

Portrait of a Lady with Fishes by Amandine Van Ray | "Chronic Fatigue Syndrome gets a Make-Over" #CFS #ME #Spoonie #SEIDPortrait of a Lady with Fishes by Amandine Van Ray

Last week, the Institute of Medicine re-named Chronic Fatigue Syndrome- also known as ME, now known as SEID (Systemic Exertion Intolerance Disease). CFS is the name most commonly used in the United States while Myalgic Encephalomyelitis (ME) is the more common name used internationally. As of last week, there is a third name to distinguish this already mysterious condition: SEID.

For many, Chronic Fatigue Syndrome onsets after a virus. Imagine being a perfectly healthy adult, child or teen and after a bout with a feverish flu, you find yourself feeling worse and worse. The appropriate time for the virus lapses, but as much as you fight to get well, your body and mind feel as though they are in shut down mode. No amount of rest or sleep is enough anymore. Just chewing your food makes you feel as though…

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

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