It’s #MEcfs Awareness Month – and please act!

millionsmissingMay is Awareness Month for a lot of illnesses, such as Amyotrophic lateral sclerosis (ALS) / Lou Gehrig’s disease, Lupus, and Mental Health.

Last month was Ankylosing Spondylitis (AS) Awareness Month, which Charis Hill wrote about extensively. (And I never managed to. Sorry.)

But this month is awareness for my primary illness, Myalgic Encephalomyelitis (ME), also known by the terrible moniker chronic fatigue syndrome.

And May 12th specifically is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) (per the May 12th International Awareness Day website), and International ME/CFS and Fibromyalgia Awareness Day.

(dSavannah note: my brain does NOT want to work today {on May 5, which is when I originally started this post}. Writing this is like trying to sludge through the grimiest, stickiest mud ever. [Which is actually how I feel most days.] But I’m trying anyway. Because this is important. Not just for me, but for the #MillionsMissing due to these diseases.)

I didn’t know why May 12th until I read a blog by my spoonie pal, Sandra Butler, which said the day was chosen because it’s the birthday of famous nurse Florence Nightingale. (Apparently her parents forbade her from studying nursing. Can you imagine if she had obeyed them?)

Interestingly enough, it’s highly possible that Ms. Nightingale also had MEcfs – she was in Scutari, Crimea in the mid 1850s, where she contracted what they called “Crimean fever”, and she never recovered. By the time she was 38, she was completely bedridden. Yet, she managed to continue her advocacy and important work teaching about health care. Amazingly, she lived to be 90 years old.

Anywho, Saturday, May 12th is #MillionsMissing day to raise awareness of ME, as spearheaded by patient advocacy group #MEAction.

And if you’re wondering why we use the hashtag #MillionsMissing – it’s pretty simple. These diseases make us disappear from our lives, and from yours. You very likely know someone who has the disease – but you don’t know they have it because you’ve “drifted apart” or “lost touch”.

Us #pwME (which stands for Patient With ME) are missing everything. We are grieving our stolen lives. We are missing {and now I’m crying as I write this. I can’t see through my glasses from the tears and the fog. This sucks. So much.} doing the things we love and being with the people we love.

Another great explanation, according to this great blog on HuffPost, “What millions are missing? Millions of people across the globe are missing the ability to lead normal lives, millions of dollars have been missing from what should be a government-funded research effort, and few of the more than 10 million doctors in the world have been properly educated as to the seriousness of the disease and how to diagnosis it.”

(dSavannah note: my brain dropped out, and I’m continuing this on Sunday, May 6. Even though my brain isn’t quite working. Have I mentioned this is important?)

So, you’re probably wondering what you can do about this, so I’ve put together a non-exhaustive list.

  1. Share this blog post on social media or via email
  2. Read and share all the posts and blogs you see about it
  3. Attend a #MillionsMissing Day of Action on May 12 – there are currently 101 events registered all over the globe, from Akureyri, Iceland to Morecambe, England, to Wellington, New Zealand
  4. Use some of the #MillionsMissing Tools to participate – including posts you can easily share on your own social media with just one click and signs and posters you can print and display in your own yard or at an event
  5. Share the Open Medicine Foundation’s #MayMomentum posts
  6. Donate to Open Medicine Foundation or #MEAction (both are tax deductible in the US)
  7. Read and share this flyer from ME Action (PDF)
  8. Watch the documentary about MEcfs, Unrest, on Netflix or another platform
  9. Organize an Unrest screening
  10. Purchase the album Music for ME, a fundraiser album of original songs and poetry composed and performed by people with ME and their carers or family about their experiences of living with ME
  11. Sign petitions, such as this one for the Scottish Parliament (can be signed by anyone world wide)
  12. Read and share articles about it and sufferers, such as ME: Unknown Cause. No Cure. New Hope., and Waking up tired and in pain: a teenager’s life with Myalgic Encephalomyelitis, and Chronic Fatigue Syndrome – It’s Worse than Multiple Sclerosis – and Fibromyalgia is No Walk in the Park Either

(there are LOTS more, but I am bone-tired now, and swaying in my seat, and totally done braining for the day so I’m gonna stop here. Please forgive any typos. But PLEASE act. Do something, for me. And for the other #MillionsMissing.)

I am one of the Millions Missing

More ramblings / other posts you might want to read...


About dSavannah

~ #disabled #spoonie fighting numerous, chronic, painful #InvisibleIllnesses ~ also #wife #feminist #ally #advocate #papyrophiliac #DogCatTurtleWrangler
This entry was posted in #dSavannahDefects, advocacy, chronicillness, community, disability, family, giving to others, hard work, health, illness, insomnia, learning, making a difference, mental illness, perseverance, shining a light, the dark places. Bookmark the permalink.

6 Responses to It’s #MEcfs Awareness Month – and please act!

  1. Char says:

    Hello, Lovely! Great Post! I’ve recently posted a similar one too. I hope that we will inspire some abled bodies to take action on our behalf… We can use all the help we can get!

    Typing these posts is a huge job, isn’t it? I hope you are doing okay, I find this online activism to be way more draining than I thought it would be. We must remember to take care of ourselves this week so we don’t crash.
    Sending you hugs

    • dSavannah dSavannah says:

      Thank you for reading & commenting! And PLEASE share a link to your post so I can share it on social media, etc. and boost the signal. (My brain isn’t working enough to just find it.)

      And yes, doing this is soooo exhausting. Unbelievably exhausting. Crushingly exhausting.

      I’m telling myself I can rest next week, and hoping I can keep this up. Because it’s important.

      xoxo and hugs back

  2. Sheryl Chan says:

    Just wanted to let you know that this article was a readers’ fav on my Twitter for the week and I’ve listed it here. Keep up the fab work of writing and raising awareness!

  3. Lisa says:

    dSavannah, I just discovered you sent me an email.. it went to spam box and when I tried to move it to inbox it disappeared. Sorry to use your blog. Please email me again. It was great to hear from you!

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