Celebrating Awareness - International Awareness Day 2016

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Awareness - Being Informed

The first step, of course, is being informed...

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[/fright]Pace-Gate - The PACE controversy presents a huge opportunity for the ME/CFS community. Taking down the shoddy, $8 million dollar PACE trial would give the CBT/GET movement a huge hit. Jennie Spotila lays out where we are with doing that in one of her best blogs yet. Bonus PACE/CBT/GET blogs below.

• PACE Trial Gets Most Devastating Critique Yet
• The Chokehold Behavioral Treatments Have on Chronic Fatigue Syndrome

Funding and The NIH (sigh) - Just how bad is the funding?

• The Male Pattern Baldness Disease? Chronic Fatigue Syndrome’s Chronic Lack of Research Funding
• How Fibromyalgia Got to Be the Worst Funded Disease at the NIH

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[/fleft]Fibromyalgia's Long Journey to Legitimacy - Karen Lee Richard chronicles fibromyalgia's long (and continuing) journey to legitimacy. (It started in the 1600's....)

Ways to Make Someone Aware... Really Aware

• Chronic Fatigue Syndrome Worse than HIV/AIDS: Five Ways To Have People Really "Get" ME/CFS
• Living on Empty: Newspaper Story Highlights Whitney Dafoe's Severe ME/CFS
• Jamison Hill's Fall: Former Weightlifter Now Has Most Severe Kind of ME/CFS

Events - Action!

The Eight Days of May Project - A Health Rising Awareness Project

• #I (May 4th): Sign the Change.org Petition to increase funding for ME/CFS - Find the petition here.
• # II - Join the MEAction Network - Join the ME Action Network here.
• #III: Enroll in the Solve ME/CFS Initiative's Biobank / Patient Registry - enroll in the program here.
• #IV : Watch the Llewelyn King - Mary Dimmock You Tube Interview
• #V: Get Inspired by the SMCI's IOM Briefing - Watch it here
• #VI: Put Yourself on the ME/CFS and/or FM Disease Maps - Chronic fatigue syndrome / M.E. / Fibromyalgia
• #VII: Check out the NIH's List of Disease Funding - Click here
• #VIII: Sign up for Jennie Spotila's OccupyCFS blog - click here

Click here to see the additional bonus actions.

[bimg=fright|130|no-lightbox]https://images-na.ssl-images-amazon.com/images/I/51R%2BG%2BtejmL._SX332_BO1,204,203,200_.jpg[/bimg]Get a Free Book!

Dan Neuffer recovered from severe case of ME/CFS/FM. Since then he hasn't stopped spreading the word that it is possible and not to give up hope. Get his "Discover Hope: 34 Steps to Find Hope and Cope" ebook on Amazon.com free for today and the next two days.

The #MissingMillions Protest

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[/fleft]"From MEAction - "#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.

On May 25th, 2016 #MEAction is sponsoring a community-organized protest at the Department of Health and Human Services (HHS) in Washington, DC. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief. It started in Washington D.C. and has spread to thirteen sites (including Antarctica (!))
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The Shoe Protest - If you can't be there - keep your feet in the game - and send your shoe! You are invited to send shoes (or photograph your shoe) as a way of symbolically joining the protest. (If you cannot send your shoes you are invited to photograph them and send that.) Find out more here

Awareness Day

The 2016 ME Blog Bomb - Just ME lists 20 plus International Awareness Day blogs published today.

The CDC "Celebrates" International Awareness Day (in their own way ) - The CDC, of course, doesn't "celebrate" anything but they do state in sober fashion:

Researchers estimate that at least one million Americans have ME/CFS, but only 20% are diagnosed with the illness. Patients, families, employers, and society endure significant costs associated with ME/CFS. These costs are estimated to be $18-51 billion annually in the United States. Although most common in women, ME/CFS affects people of all ages, including children, and all races and ethnicities. Scientists have not determined the cause or causes of ME/CFS.

The Awareness Video's

The Top Viewed Chronic Fatigue Syndrome/ME/CFS/ME Youtube Video's

The 2000 "I Remember ME" video (193,000 views)

The original - a 2000 biographical documentary that chronicles filmaker's Kim Synder's attempts to get help for over four years. In between she interviews many of the main figures of the time including Dr. Peterson, Dr. Bell and Dr. Reeves and explains the history of ME/CFS.Just posted four years ago - but already almost 200,000 views

The 2006 Sleepydust Video (169,000 views)

Classic, elegant and poignant video that gets right to the heart of the matter.

Plus....

The Invisible Illness - Stories of Chronic Fatigue Syndrome - Palo Alto Online Video - 34,000 views

Powerful recent video that highlighted Whitney Dafoe's, Jamison Hill's and another patients story

Plus...a new breed of ME/CFS/FM researcher - a younger researcher and pioneer, a researcher who is dedicating his career studying these illnesses - talks:

Jarred Younger Talks on International Awareness Day and Hope for the Future​

 

[San Diego]

Pace-Gate - The PACE controversy presents a huge opportunity for the ME/CFS community. Taking down the shoddy, $8 million dollar PACE trial would give the CBT/GET movement a huge hit. Jennie Spotila lays out where we are with doing that in one of her best blogs yet. Bonus PACE/CBT/GET blogs below.

• PACE Trial Gets Most Devastating Critique Yet
• The Chokehold Behavioral Treatments Have on Chronic Fatigue Syndrome

Has anyone called them “PACEholes” yet? If not, I’d like to officially submit the name and take full credit.