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International Chronic Fatigue Syndrome (ME/CFS) Awareness Day Isn’t What it Used to Be…

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By Cort Johnson • • May 14, 2017

International Chronic Fatigue Syndrome (ME/CFS) Awareness Day Isn’t What it Used to Be…

Reprinted with the kind permission of Cort Johnson.

By Cort Johnson

Making A Difference

Of course this is an important day for advocacy and the biggest advocacy effort is occurring right now in Washington DC where the Solve ME/CFS Initiative (SMCI) and ME Action have teamed together to tell our politicians that today is the day to learn about and support chronic fatigue syndrome (ME/CFS).

America’s Hidden Health Crisis” – The Feds Celebrate May 12th (!)

This year even feds are celebrating Int. ME/CFS Awareness Day.That is a good sign…

The CDC actually called ME/CFS “America’s Hidden Health Crisis” in their piece “America’s Hidden Health Crisis: Hope for Those Who Suffer From ME/CFS“. Those are strong words from a traditionally very conservative group. They also used one of the more evocative images of ME/CFS I’ve seen. In the piece they stated that:
“ME/CFS affects men, women and children of all races and ethnicities. Between 825,000 and 2.5 million Americans are estimated to have ME/CFS. Yet, this debilitating illness remains largely invisible to most Americans, despite costing U.S. society an estimated $18–59 billion annually in medical bills and lost incomes.”
And listed a long set of activities they are working on in ME/CFS.

The NIH posted that May 12th is International Awareness Day on their ME/CFS page and linked to NIH Director Collins and Dr. Koroshetz’s inspiring recent blog “Moving Towards Answers on ME/CFS” on the NIH’s commitment to ME/CFS. (Note that the Director has rarely, if ever, written a blog declaring the NIH’s commitment to a disease. This time he did..Find out more on that here.)

NIH ME/CFS Intramural Study in the News – Check out two excellent recent media pieces on the NIH Intramural Study both featuring former journalist and now ME/CFS patient Brain Vastag.

Learn and Spread the News

Buy Valerie Free’s Book “Lighting Up a Hidden World: CFS and ME”  for yourself or others. This highly praised book – which was years in the making – covers both Valerie’s story and just about every important aspect of ME/CFS including  the fight for better funding.

Sign Up to See the Film “Unrest” – Jen Brea’s film Unrest has been getting great reviews. It recently did a three-day stint at Toronto and is now in Vancouver at the DOXA festival and at the DocLands in Marin County, CA. Get a ticket and support a film dedicated to spreading awareness about ME/CFS – and doing it in a remarkably engaging way. Find out how to sign up to host a screening here. Follow Unrest on Facebook here.  (A review of Unrest is coming up shortly on Health Rising).

Watch and Spread the Word on Jen Brea’s TED Talk on ME/CFS – Jen Brea’s TED talk “What Happens When You Have A Disease That Doctor’s Can’t Diagnose” has been seen 1,217,000 times. That amazing stat is a testament to just how good her talk is. It also means that several hundred million people in the U.S. and many more outside it haven’t seen it yet. Use your email and social media accounts to get this talk out to them and spread the word…..(Check out a short blog on the talk here.)
Dr. Patrick McGowan talks on his exciting recently released paper on Epigenitics and ME/CFS in a CIIND webinar. Register here.

On This Day – Give Just a Little Bit!

In recognition of their work, give a small amount of money to an ME/CFS Organization. It will feel good – and they will appreciate it.

ProHealth is pleased to share information from Cort Johnson.  Cort has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, he has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort's and other bloggers' work at Health Rising.

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