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).
- Do That Here – I cannot believe how simple they made this.
- Protest Virtually with the MillionsMissing protests – actions are occurring in 12 cities around the world. Find out how you can virtually (online) support them.
- Enroll in the SMCI’s Biobank/Patient Registry – as funding increases, having a large Biobank/Patient registry is going to assume more and more importance. For one, it’s going to allow research to proceed more quickly and cost less.
- Give Your Genetic Data to Dr. Klimas – Studies indicate that ME/CFS has some genetic roots. Help Dr. Klimas decipher ME/CFS’ roots by providing the genetic data you have from 23andME or Ancestry.com to her. (All data is de-identified.) Check out a blog on the project here or just enroll here.
- Sign Up with ME Action – support our international advocacy portal
- Contribute to MEPedia – take some time and contribute a little something to the online ME wikipedia.
- Have Your State Proclaim May 12th ME/CFS Awareness Day – Massachusetts did it. Find out how they did that here.
“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.)
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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.
- NIH launches study seeking answers on chronic fatigue syndrome
- NIH Study Aims To Unravel The Illness Known As ‘Chronic Fatigue Syndrome’
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.
- The Bateman Horne Center – providing patient care and collaborating with cutting-edge researchers
- Health Rising – that’s us…Bringing the news week in and week out. See donation widget on right hand side of the page
- Invest in ME – UK research foundation and patient support. Puts on International conferences every year.
- ME Action – Fighting for equality for ME/CFS patients around the world
- The Nevada Center for Biomedical Research – Recently produced possibly first immunosignature for ME/CFS
- The National Center for Neuroimmunology and Emerging Diseases – Australian research group dedicated to ME/CFS research believes they may have found a biomarker
- The Open Medicine Foundation (Ron Davis) – featuring Ron Davis’s visionary “End ME/CFS” project
- The Simmaron Research Foundation – seeking to redefine ME/CFS through immunological investigation and collaborations with top researchers. Featuring ME/CFS expert Dr. Dan Peterson.
- The Solve ME/CFS Initiative – funding cutting edge research, the Biobank/Patient Registry, advocacy, webinars and an information resource – the SMCI does just about everything.
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.