May 12th is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome International Awareness Day – Show Your Support

May 12th is International Awareness day for the following Chronic Immunological and Neurological Diseases: Fibromyalgia, Gulf War Syndrome, Multiple Chemical Sensitivity, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). May 12th was chosen because it’s Florence Nightingale’s birthday. Ms. Nightingale was an English army nurse and also a pioneer in what would become the International Red Cross Movement. She became ill while working on the front lines and never really recovered. Her symptoms of pain and fatigue closely resembled what we today know as fibromyalgia and chronic fatigue syndrome. She was virtually bedridden for the rest of her life until her death in 1910.

Sadly, ME/CFS is an underfunded and often ignored disease, much of the advocacy has had to come infofrom the patients shouting out from the rooftops, either virtually from their beds as they are too ill to go out, or from friends and families at public protests. If you are interested in joining in support or spreading the word on the realities of this illness please check out ME Action for ways to participate in Calls to Action on May 12th, publicly or even from your home.

If you are still an ME/CFS skeptic check out this page from the Center for Disease Control (CDC). There are oodles of scientific proof of the disease at this point, but I have to believe that even skeptics will trust the CDC. Honestly the CDC website was lacking in their information regarding ME/CFS until last year, wherein they updated the site with recent content to reflect the more up-to-date scientific findings. Last I heard it was felt that there was still some work to be done as the seriousness of disease is still not entirely reflected but they are coming along. They have even provided the following ways to support ME/CFS patients on Awareness Day:

“ME/CFS Awareness Day is being observed around the world in many different cities and countries. This day helps bring awareness to ME/CFS patients, families, caregivers, and researchers. You can show your support by a range of activities:

  • Wearing the color blue on May 12, 2019.
  • Looking for and supporting local ME/CFS events in your community.
  • Considering planning an event if there is not one in your community.
  • Sharing your personal stories about ME/CFS.
  • Telling a neighbor or friend about ME/CFS.
  • Learning more about ME/CFS.”

Thank you for stopping in today. Between sharing ME/CFS awareness on Instagram this month, a Money-Matters[1]30-minute dentist appointment last week (I’m pretty sure my dentist is a superhero with her lightning fast speeds, either that or she doesn’t want me to faint on her), and a horrible experience at a social security disability exam a couple days ago I’m wiped out, but I am able to sit up in bed today so that’s a plus. I wanted to share the above with you because sitting back and doing nothing doesn’t feel like an option to me. So many of us with ME/CFS overexert ourselves this month but if we don’t do it, who will? Here’s the part that might help you understand our advocating. The disease is completely underfunded. In fact a lot of funding comes from patients and friends & family of patients. The advocacy is also to help raise money for continued research. It’s pretty ridiculous/sad/outrageous (you choose) that patients are having to beg for funding for an illness that affects millions of people globally. Thank you for stopping in. Hoping today is treating you kindly. 💙

 

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20 thoughts on “May 12th is Myalgic Encephalomyelitis / Chronic Fatigue Syndrome International Awareness Day – Show Your Support

  1. I hadn’t realised the reasoning behind it being the 12th, a poignant choice with Florence Nightingale. This is a wonderful post, you do a fantastic job of raising awareness, while also helping support others & remind us we’re not alone  ♥
    xx

    Liked by 1 person

    1. Thank you 💙 Before I got sick I kept busy and to lose that ability was devastating so I guess I keep busy doing this now. It’s a different busy but it helps to feel involved in something and that I’m still making a positive contribution.

      Hoping you’re doing best as possible 🌸

      Liked by 1 person

  2. Erik Johnson

    I will be spending May !2th, ME/CFS Awareness Day at Truckee High School
    The site of the first cluster of “mystery illness” that scared Dr Cheney and Dr Peterson
    into calling the CDC for help back in 1985.

    “Ground Zero for Chronic Fatigue Syndrome”

    Liked by 1 person

  3. Funny, I’m in New Zealand and have CFS, and didn’t think there was ANY funding! It’s become a wastebasket diagnosis. As soon as you tell q doctor you have CFS they write you off, because they can’t help. They attribute EVERYTHING to your CFS and therefore don’t investigate actual illnesses. Thank you for your post!

    Liked by 1 person

    1. Hi Wendy, I’m
      Sorry to hear you have CFS, and that your experiences have been utterly frustrating, just like so many of us. It’s certainly an exercise in persistence to get care. My labs started to show other stuff going out of range and that’s led to further care but all in all, it’s been borderline malpractice over and over again. There’s money trickling in but not anywhere near where it should be. But I believe that in time things will begin to turn a corner, hopefully very very soon. Hoping today is or has been the best it can be for you.🌸

      Liked by 1 person

      1. Makes you wonder if the ‘first do no harm’ oath doesn’t apply to CFS. I was once released from ER, told I was fine, asked for a copy of my labs on the way out and low and behold they were all sorts of out of range. Had I not asked I would have never known. Sending you strength to warrior on 💪💙

        Liked by 1 person

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