Home » NIH

Tag: NIH

millions missing banner

Put Out Your Shoes For ME Awareness Day

millions missing bannerAn international #Millions Missing day of protests and demonstrations by people with ME (myalgic encephalomyelitis), their caregivers, family, and friends takes place again this year on May 12th. Patients too ill to leave their beds are encouraged to participate via still photos or videos shot by family, friends or caregivers. (I define caregivers as anyone who cares about or for a person with ME, not necessarily providing only hands-on services.)

The driving forces behind the rallies are health equality and awareness. Shoes have been a powerful, unifying symbol for #MillionsMissing since 2016 when the first global protests were held.

shoes with signs
Empty shoes make a powerful statement.

Demonstrations display rows of shoes to represent people who are missing from their lives due to myalgic encephalomyelitis (ME). The haunting image of rows of empty shoes is a powerful symbol of this disease’s effect on people’s families, careers, and lives.  

empty shoes
Empty shoes in Melbourne symbolize people with ME who are no longer able to fulfill family and professional roles.

Those of us with ME would be lost if not for able-bodied supporters who take our place at these rallies and make some noise for those of us too ill to do it ourselves. THANK YOU!

Failure of the NIH to address this disease is unconscionable given the number of people affected, and the immense burden it has on our lives and on our families.

The National Institutes of Health (NIH) clearly needs a political incentive to address the crisis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) with real commitment. On May 12th, the grassroots activist group #MEAction plans to give the NIH that incentive by mobilizing thousands of people in every state across the country to show up for #MillionsMissing–whether from their homes because they are not well enough to leave, or on the streets–to show the NIH director, Dr. Francis S. Collins, that this disease deserves urgent attention.

We Must Fight For

NIH Funding Equality

The NIH has neglected people with ME/CFS by relegating the disease to the bottom of its funding priorities for decades. According to #MEAction, NIH funding in the last 20 years has averaged about $5 million annually for ME/CFS. In 2017, the budget for ME/CFS finally increased to $13 million annually after the NIH announced research funding for three Collaborative Research Centers and a data center.

The following remake of Bob Dylan’s epic Blowin’ In the Wind always moves me to tears! While I have been able to get much of my life back, millions of other people with ME lie in darkened rooms day after day (as I once did) because the stimulation of light and noise overwhelms them.

My post about David Tuller, The Man Who Changed ME/CFS Treatment Recommendations speaks to the PACE trial referenced in the video. For more information, please see https://bit.ly/2I7ptFQ 

Based on a report detailing the disease burden of ME (number of people affected and the effect of the disease on their lives) the annual research budget for ME/CFS should be a minimum of $200 million per year. This is a reasonable request in the context of funding for other diseases. For example, funding for multiple sclerosis was an estimated $100 million last year whereas ME is two to three times more prevalent than MS, and has a lower quality-of-life (QOL). In short, ME/CFS patients score more poorly on QOL surveys than those with multiple sclerosis, stroke, diabetes, renal failure, lung disease, heart failure, and several cancers.

Dye Your Hair Blue

Bright, beautiful sky blue is the official color to represent ME.

ME awareness ribbon
Wear a blue ME Awareness ribbon!

Lapel ribbons, balloons, your clothes, hair and accessories and even your cupcake icing can all be blue at ME awareness events. Better yet, purchase and proudly wear a #MillionsMissing T-shirt like at the rally above. Go to http://millionsmissing.meaction.net/shop/

If you’re unable to attend a gathering in your community, change the lightbulb on your porch to make it blue for ME. Put a blue rinse in your hair, have friends and caregivers blow up a blue balloon bouquet, put up yard posters (#MEAction has ideas on the website), hand out leaflets and just generally spread the word.

If you want more information on May 12th activities, please visit #MEAction’s comprehensive website at https://www.meaction.net/.

This list of practical ways you can help people with ME was compiled by Char on http://chronicallyhopeful.com. Revisions and annotations are my own.

  1. Learn More About ME by searching on Google, Bing and other sites like https://www.meaction.net, https://www.mesupport.co.uk, http://cfsknowledgecenter.ning.com, http://forums.phoenixrising.me/index.php, www.healthrising.org
  2. Search out and read blogs written by people with ME
  3. Raise awareness and the abysmal lack of research funding through events like #MillionsMissing on May 12th
  4. Educate your local city/county legislators, healthcare providers, pharmacies and churches
  5. Host an art exhibition or performance to shed light on life with ME
  6. Do a charity walk/run with friends or colleagues
  7. Display a poster in a public area (supermarkets, hospitals, waiting rooms, libraries, sports clubs, your lunchroom or elevator at work, etc.)
  8. Write a blog post about ME or publish a guest post by a person with ME
  9. Interview a person with ME on your vlog, podcast or radio show
  10. Speak to pastors, doctors, nurses, physical therapists, hairdressers or laundry services about making provisions to better serve local people with ME
  11. Post information about ME and the awareness events on social media using the hashtags: #MillionsMissing #CanYouSeeMEnow #May12th #MEcfs
  12. Host a tea party or pajama party and include a screening of Unrest, the award-winning, Oscar-nominated documentary written, produced and directed by Jennifer Brea https://www.unrest.film/
  13. Send local media information packs about ME and invite them to the May 12 protests and demonstrations

Thank you for your interest in helping raise awareness for this very neglected condition. It means a lot that you would spend your time and energy on our behalf.

I speak for all people with ME when I say we are so very grateful for your support!

Advertisements