#MEAwareness: You Are Not Alone

This is the fourth year I am participating in #MEAction‘s #MillionsMissing Advocacy for my disease, Myalgic Encephalomyelitis (MEcfs).

And, I’m tired, y’all. I’ve barely begun my posts that need to be published starting today, Sunday, May 9 (I started this one on Thursday, May 6!), even though I’ve been planning and collecting information for this week’s posts for a while now. It’s truly a miracle I’ve managed to gather all the information and links I’ve put below.

I’m tired of fighting my body all the time (though truth be told, I’ve learned to listen to my body and not push myself if I can help it; except right now of course, as I work frantically on my posts for #MillionsMissing). I’m tired of fighting my brain (which I’ve been doing whilst trying to write these posts). And I’m tired of fighting for awareness of this disease, so there can be enough funding to find a biomarker, treatment, and possibly a cure.

But… I’m not alone in my fight.

As Julia Miele, the new Executive Director of #MEAction wrote in a recent email,

What started as a single protest in Washington, DC in 2016 – a day of action to demand equal treatment and an end to the stigma surrounding the diagnosis of ME – has evolved into an annual global health equity campaign that is transforming the landscape of ME research, medical education, and public awareness.

“#MillionsMissing 2021 reminds everyone #YouAreNotAlone – through storytelling, art, advocacy, our unified presence at virtual events – in taking on a fight that is now more urgent than ever. People with ME are at the center of all we do at #MEAction. We are in this together.”

How you can help:

The timeline of actions from The #MEAction Network. Today, Sunday, 5/9, is a day to Gather Allies.

I know it probably feels like there is nothing you can do, but that’s not true. Here is a non-exhaustive list of things every member of every community I’m in can do (and note: patients with MEcfs need healthy allies, so please do at least one or three of these things!):

Boost the Signal!

1. Share this blog post on social media or via email, and the ones I will be publishing in the next few days. You can also share the posts I’ve previously written specifically for #MEAwareness.
2. Read and share all the posts and blogs you see about it, such as M.E. myself and I, Chronically Hopeful (and check out her handy list of ways you can help the #Millions Missing), and ME/CFS Self-Help Guru. (Note: there are many many many other bloggers who write about ME. I just can’t remember or get links for them all, especially since I’m typing this at 11:12pm on Saturday, May 8! If you are one of those bloggers, feel free to drop a link in the comments below!)
3. Participate in #MEAction‘s #MillionsMissing social media outreach; share everything on your social media platform of choice with these hashtags: #MEAwarenessMonth, #MillionsMissing, #MillionsMissing2021, #MillionsMore, #YouAreNotAlone, #pwME, and #MyalgicE, and anything tagged with @MEActNet.
4. Do some of the items #MEAction lists in their Virtual Toolkit, and share their graphics.
5. Share information about Open Medicine Foundation‘s #MayMomentum campaign: anything with the #MayMomentum hashtag; create a digital fundraiser on a social media platform; share the graphics they’ve created; and other ideas they’ve outlined in their social media toolkit.

Learn more about MEcfs

1. Watch Jen Brea’s 2017 award-winning documentary, Unrest, which is available again to watch for free on Netflix.
2. Visit the US ME/CFS Clinician Coalition; they have provided a roadmap of diagnostics and treatment recommendations for non ME/CFS practitioners, as well as a great overview for ME/CFS patients.
3. Check out my page of MEcfs Resources, including links to information on Symptoms and Treatment, Research Organizations, Advocacy, and Additional Resources (including links to other films).
4. Check out my Bookshop list of Books about Myalgic Encephalomyelitis (MEcfs) [affiliate link] and buy one or three to read.
5. Visit ME-pedia, a crowd-sourced encyclopedia of ME and CFS science and history, founded by MEAction, powered by the patient community, and built by volunteers.

Participate

1. Attend one of the virtual #MEAction Events throughout the week: the Artist’s Salon on May 10, the Global #MillionsMissing event on May 12, and the “GatherOUND” Community Meet & Greet on May 14.
2. Attend the virtual ‘Blue Sunday’, The Tea Party for ME, on Sunday, May 16th, or host your own! (Details on how to join in.)
3. Join Solve ME‘s You + ME Registry and Biobank – they need healthy people as well as patients to take part!

Make your voice heard

1. Send an email or letter to friends and family about the disease; #MEAction has provided this handy template to make it easy.
2. Take part in #MEAction’s Postcards To Doctors campaign (US only), to encourage them to take the Unrest Continuing Medical Education course; #MEAction has provided easy-to-follow instructions!
3. You can also Email your Doctor (US only), to encourage them to take the free continuing education course / webinar Post-Viral Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): What Every Clinician Needs to Know.
4. Sign #MEAction’s community letter to the newly-appointed US Surgeon General, Dr. Vivek Murthy, asking him to become a champion for MEcfs.
5. Sign #MEAction’s open letter to the NIH and CDC.
6. Write a Letter to an Editor of your local paper – #MEAction has provided PDF downloadable toolkits for the US and UK.
7. Ask your Representatives to co-sponsor the COVID-19 Longhaulers Act, by signing this letter created by Solve ME.
8. If you’re in the UK, fill out the ME/CFS Priority Setting Partnership Survey.

Donate

1. to #MEAction to fund their important advocacy work, including #MillionsMissing (tax deductible in the US).
2. to Open Medicine Foundation’s #MayMomentum fundraiser (tax deductible in the US).
3. to Solve ME, as part of their Double Your Money Challenge (now through June 30), which means every dollar you donate will be matched up to $250,000! (Tax deductible in the US.)
4. As part of ‘Blue Sunday’, The Tea Party for ME – she lists a number of ME charities you can support.

And come back tomorrow to meet three artists with MEcfs!

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