Are You One of the Millions Missing?

This past Saturday, on May 12th, Washington DC joined over 100 cities worldwide to call on governments and health officials to take critical action for people living with Myalgic Encephalomyelitis, commonly known as Chronic Fatigue Syndrome.

I spearheaded the DC Millions Missing event, sponsored by MEAction, which was held at the Freedom Plaza at 13th and Pennsylvania, between the White House and the U.S. Capitol. 

And I could not have done so without the help of Ben HsuBorger, Beverly Weiss, Jenna Taylor and Halah Al-Jubeir. Several personal friends provided invaluable assistance and support both during and leading up to the big day as well. I am and remain grateful to all.

If you are reading this before May 22, 2018 please sign our petition to the National Institute of Health which asks for research funding parity. (More what you can do to help below).   

We had 100s of shoes sent from around the country, and even a pair from Denmark, to represent those too sick to attend, each with a card that revealed what they were missing.  My favorite said “I miss being fabulous!”  

“ME is like a butterfly chained to a stone.” Quote from Emma (age 9) sick for 3 years and living in Norway. Photo Credit :: Charlotte Berge

“ME is like a butterfly chained to a stone.” Quote from Emma (age 9) sick for 3 years and living in Norway. Photo Credit :: Charlotte Berge

And over 90 people showed up, despite the day being the hottest day yet this year in DC at over 90 degrees.

One elderly woman, who attended on behalf of her niece who lives in Chicago, fainted, and we had to call 911. She was okay.

That so many came, despite such heat, and to put their health at further risk was really amazing. 

The commitment of the family and friends as well as patients that MEAction was able to organize demonstrations in more than 100 cities world wide show the depth of the need. 

Millions Missing is an annual global campaign first launched by #MEAction in 2016.

And 2018 was third year global day of action and included a record number of cities in the US, Canada, United Kingdom, as well as Europe, South Africa, New Zealand & Australia. Activists in Mexico, Guatemala, Chile and Pakistan also participated.  

Check out this video in a tweet from the ME CFS Foundation of South Africa. This global movement is a testament to the breadth of the suffering.

We gathered to offer remarks and the testimonies of those afflicted with ME/CFS. We had six speakers lined up, but only four ended up speaking because of the brutal heat. Those of us with ME/CFS are well versed and nimble in adapting to adverse circumstances!

The four speakers addressed different aspects of living with this debilitating illness.

  • One spoke to the challenges of navigating the health care system which you’re so sick;

  • One spoke to all the gaps - in funding, in our lives, and in perception;

  • One spoke to the day-to-day emotional turmoil of living with ME/CFS and the need for connection and community; and

  • One spoke to the importance of advocacy with our government and the need for research,

Before Kate Singleton became ill, she worked in health literacy consulting. On Saturday, she spoke to the challenges she faces as a person with ME in the US healthcare system and noted that the health care system itself is not in good health.

She explained that health literacy work is all about empowering people to access and navigate healthcare effectively and to advocate for what they need.

As a person with ME in the United States, she noted, she is doing high level health literacy work for herself all the time.

She added this positive note :: 

When thinking about us people with ME and the healthcare system, I want to ask you to believe in the possibility of positive change, and your own power in creating that. I ask you to go into healthcare encounters seeing the candle of light inside yourself that you bring to every situation, no matter how sick you are. It is not acceptable to let the world snuff out your candle. Do not let ignorance and invalidation from healthcare providers blow out your light. Instead, I ask you to realize that by sharing your ME story unapologetically, by educating others, and by persistently calling for better care for people with ME, you are shining a light on the shortcomings of the healthcare system that need to be fixed for everyone’s benefit. Maybe it takes an illness as extreme and complex as ours to do that. You are helping everybody. Keep shining your light.

Jill Hinson, President and co-founder of ChangeFusion, an organization development consulting firm, spoke of the gaps around ME/CFS :: the gaps in funding, the gaps in our lives and the gaps in disease reality versus perception.

There countless stories of people stopped right in the middle of their lives.  There’s the gap of what I was – I was a marathon runner. I was a yoga teacher. I was able to travel without collapsing. I was able to hike, work, – you fill in the blank. 75% of those affected unable to work. 25% homebound are bedridden. 75-85% of them are women. A doctor told me, “ you keep telling me what you used to be able to do. That person is gone. You will never be able to do those things again.” I simply don’t accept this. We need to overcome the gap of funding to ensure this isn’t true for me – or the other 30 million whose lives are significantly disrupted.

She also noted that National Institute of Neurological Disorders and Stroke Director Walter Koroshetz acknowledged, “we are 50 years behind” on the research.  Jill added to that that we are also “years behind on understanding.”

Jenna Taylor, LCPC, NCC, provides mental health therapeutic counseling to clients living with chronic illness, as well as other life crises.

She shared her mantra for hope: H-O-P-E, which stands for hold on pain ends. She spoke to the vital importance of belonging and purpose.

And Jenna forthrightly described the grief and anguish those with ME/CFS live with ::

Now it is possible that you may have had depression or anxiety before this disease struck, and the stresses of this illness without emotional support will likely make it worse. It is also possible that you have never had depression or anxiety in your life and experience it for the first time struggling through this process – and both of these situations are NORMAL! Who WOULDN’T be distressed finding themselves living months and then years with a constant state of illness with little understanding and no treatment that gets you back to 100%? There is GRIEF! Loss of what you are supposed to be doing – school or work or being with kids or husband or friends, activities and social events and travel. Really, very few people really enjoy laying around month after month, year after year feeling useless! Remember – purpose is part of human nature too. So without connection and community, we lose purpose and without purpose – we grieve and become depressed.

Jenna also noted how online communities, national and international, provide critical connectedness that are life-savers, literally at times.

Finally, Carol Head, President at the Solve ME/CFS Initiative, addressed the crowd. The Solve ME/CFS Initiative (SMCI) is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research.

Carol referred to the definitive report of the Institute of Medicine that was issued three years ago, and how through that report,

the federal government has now clearly affirmed that this is a serious, physical disease…not a syndrome. For the million Americans who have long suffered with skepticism and lack of care, this is deeply affirming. And therefore, there now exist no credible barriers to significantly increasing medical research funding for this disease that will lead to treatments and cures. The seriousness of this illness can now only be refuted by those who choose to be ignorant.

Solve ME/CFS organized an advocacy day on Capitol Hill yesterday, on Tuesday May 15th 2018. Patients and family and friends shared their stories with Members of Congress, both in the House and the Senate, so we can secure the research funding we need.

You can use this tool to contact your Congressional representatives and register your voice in support. Please do!

For entertainment and to gamer the curiosity of passerbys, our DC gathering featured some marvelous live world jazz from Latin American musicians Mario & Jose whose compositions are inspired by the music of their native Bolivian and Andes culture.

With their style of flamenco-latin jazz, their talent and soul brings listeners to a magical connection with art and passion. 

They’ve recorded 4 albums – Mi Musica, King StreetLuz Del Sol and Cadenza, with original music and are currently working on their latest album under their new name Mario & Jose which is coming out this summer.

Check out their website, which includes sampling of their amazing, uplifting music. If you’re in the DC area, you can enjoy them live at their weekly Friday night gig at Quadrant Lounge at the Ritz Carleton on 22nd Street.

We were also blessed to have Erik Todd Dellums read poetry written by those afflicted. Erik is a writer, a voice artist and an actor based in Washington DC. His television credits include roles in Homicide: Life on the Street, The Wire, NYPD Blue and most recently HBO’s Homeland. He also appeared in films including She’s Gotta Have It, and he currently narrates the Science Channel’s How the Universe Works and NASA Unexplained Files.

With the same empathy and sensitivity he brings to his acting rolls, Erik’s voice brought to life for us three of the winning entries of the MEAction poetry competition of 2016 – Not Dead Yet, ME, and a Millions Complaints. You can read the poems and the other winning entries here.

And finally we were blessed with a a spontaneous performance from the Shimmy Mob Global Team. They had a permit to perform on the Freedom Plaza space after us, but arrived early and did an amazing, joyful dance for us!  The dancers were wearing shirts that said they danced to give voice to the silenced, and that they indeed did!

We closed our time together with a guided meditation, the Whitney plea, and a moment of silence for those who have committed suicide because of this illness.

It’s not over, and I hope you’ll help us. The entire month of May is dedicated to raising awareness.

What can you do today? ::

  • Help inform others by using this tool at Twibbon to put a frame for Millions Missing on your social media profile photo.

  • Sign our online petition to NIH. We collected 70 signatures in DC for our petition to NIH on Saturday. We need many more to reach our goal. You can still sign here

  • Contact your Congressional representatives and ask that they sponsor Sen. Edward Markey’s (D-MA) resolution to support the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day. Emily Taylor, Director of Communications and Advocacy at Solve ME/CFS Initiative, created a very helpful toolkit with phone numbers and sample letters too.

  • Donate to the MEAction fundraising effort on Indiegogo which runs until the end of the month. We’re trying to raise $100,000. The monies will support their effort to connect those with ME/CFS, advocate for more funding from our government, educate the public, and inspire researchers to dig into this complex illness.

Other fast facts ::

A Gallery of the Event