GOOD

Raising Awareness About the Devastating Disease Your Doctor Has Never Heard of

One million Americans have Chronic Fatigue Syndrome, but the NIH spends five times as much studying male pattern baldness.


When I first got sick, it was the total coming apart of my body that preoccupied me. At the age of 28, in the space of less than two years, I went from being an ambitious doctoral student to a woman with a dizzying array of neurological and autonomic symptoms. Where I had once traveled the world as a freelance journalist, I could no longer leave my house.

What I did not notice until years into my illness, when I first decided to make a documentary film about my experience and the experiences of others living with Myalgic Encephalomyelitis, was that all the while, alongside my health, my identity and my dignity were gradually being taken from me.


I am one of a million Americans with Myalgic Encephalomyelitis, or M.E., an illness that describes a subset of people diagnosed each year with "Chronic Fatigue Syndrome."

I struggled with doctors who believed there was nothing wrong with me. Others thought my condition was psychosomatic. It did not matter how many journal articles I brought into the consultation room, or how calm and rational a patient I tried to be—in their eyes, I was an unreliable witness to my own illness.

For decades, the patient community and our doctors and advocates have fought for greater recognition of the disease. It was first documented in the 1930s alongside outbreaks of poliomyelitis, although some believe the disease is much older. After a series of clusters in the 1980s, most notably one in Nevada involving more than 300 people, officials in the U.S.—some of whom believed these were really incidents of mass hysteria-coined the term "Chronic Fatigue Syndrome." The name and its overly broad diagnostic criteria allowed for a distinct, well-documented (albeit still not well-understood) disease to be subsumed by a category that can encompass everything from undiagnosed celiac disease, to lyme disease, to overtraining syndrome.

There is no cure or standard treatment. Federal funding for research is minimal: the NIH allocates $16 million dollars each year to study male pattern baldness and only $3 million for Chronic Fatigue Syndrome75 to 85 percent of the patients affected are women. There are no drug treatments in the pipeline. It has no home in any specialty. The disease is not taught in medical school and most doctors don't know how to diagnose it. If you have an acute episode or flare in your symptoms, there is no ER you can go to to get proper treatment. For many patients, there is a general feeling that much of the medical community and the government have spent the last thirty years diligently doing nothing at all.

We are not a likely group to plot a revolution. The "mild" among us have lost 25 to 50 percent of our previous level of function. If we still work, we have little capacity left for much else. For moderate to severe patients, it's like living with late-stage cancer, full-blown AIDS, or congestive heart failure, for decades. Many of us are confined to our homes and our beds. We are unlikely to ever gather on the mall and make our numbers known. There will be no one million man and woman march. We cannot walk for a cure.

And so what has unfolded in the last several days has completely astonished me. I think we have astonished ourselves.

On October 22, I set out to raise $50,000 with and creative producer Kiran Chitanvis—one quarter of our $200,000 budget—on crowdfunding platform Kickstarter. We gave ourselves a month to do it. With a successful campaign, we thought we could convince other private funders and foundations that there was an audience for this film. We knew we would get there, but we thought it would be a fight. I thought, "Who really cares about a little-known disease with two very unfortunate names?"

While I believed in the power and the universality of the story we wanted to tell, I had begun to internalize an entirely different narrative—one of powerlessness, where it is ordinary and expected to have your suffering overlooked and ignored, where it is important (as many well-meaning people reminded us in the early days of our project) not to expect too much.

We reached our $50,000 goal in three days, five hours.

On Facebook, Twitter, blogs, forums—the only agora where those of us with M.E. will ever gather—patients started talking of an "uprising from our beds." That this film might be "our message to the king." I received hundreds of emails and messages, many of them expressing a sense of renewed optimism that had not been felt in years. Others talked of "coming out" after closely guarding their diagnosis for decades, fearful of the stigma and shame that comes with living with an oft-maligned disease.

Our ambition now is to raise our full budget of $200,000 on Kickstarter and to do that with the backing of 6,509 people—the greatest number ever for a documentary film. It takes just one dollar to sign your name. We have until November 22 to do just that. We want incontrovertible proof that we exist, that we are numerous, and that there is a passionate, visible, vocal audience that wants to see this story told.

While we could not possibly have predicted or planned this groundswell of support, I have been thinking about what lessons to take from the last ten days to share with the GOOD community.

First, storytelling can have a power far greater than any other force when the root of the injustice is a lie.

Second, it does not matter how long the status quo has existed, or how many people have tried and failed to change it. We cannot afford to stop expecting more from life than what we are given. Whatever the challenge we face, maybe it's not that the world is an inherently unkind or indifferent place, or that the obstacles before us is a fixed and immovable mountain. We must be just as vigilant about the stories that we tell ourselves.

Even with all the early enthusiasm we have built around our Kickstarter campaign, I know that "Canary in a Coal Mine" is only a film. It's not the overhaul of decades of harmful health policy, nor is it a cure. However, in order to get there, we must be visible. When we are disconnected and alone, it is all to easy to believe that we are in it alone. The strength that comes from many shouting as one voice, no matter how weak we are individually, can shake the world.

Do this: Watch a short video about life with M.E., the most prevalent and devastating disease your doctor has never heard of.

Articles
via Collection of the New-York Historical Society / Wikimedia Commons

Fredrick Douglass was born into slavery in 1818. At the age of 10 he was given to the Auld family.

As a child, he worked as a house slave and was able to learn to read and write, and he attempted to teach his fellow slaves the same skills.

At the age of 15, he was given to Thomas Auld, a cruel man who beat and starved his slaves and thwarted any opportunity for them to practice their faith or to learn to read or write.

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Culture
via Thomas Ledia / Wikimedia Commons

On April 20, 1889 at the Braunau am Inn, in Upper Austria Salzburger located at Vorstadt 15, Alois and Klara Hitler brought a son into the world. They named him Adolph.

Little did they know he would grow up to be one of the greatest forces of evil the world has ever known.

The Hitlers moved out of the Braunau am Inn when Adolph was three, but the three-story butter-colored building still stands. It has been the subject of controversy for seven decades.

via Thomas Ledia / Wikimedia Commons

The building was a meeting place for Nazi loyalists in the 1930s and '40s. After World War II, the building has become an informal pilgrimage site for neo-Nazis and veterans to glorify the murderous dictator.

The building was a thorn in the side to local government and residents to say the least.

RELATED: He photographed Nazi atrocities and buried the negatives. The unearthed images are unforgettable.

For years it was owned by Gerlinde Pommer, a descendant of the original owners. The Austrian government made numerous attempts to purchase it from her, but to no avail. The building has served many purposes, a school, a library, and a makeshift museum.

In 1989, a stone from the building was inscribed with:

"For Peace, Freedom

and Democracy.

Never Again Fascism.

Millions of Dead Remind [us]."

via Jo Oh / Wikimedia Commons

For three decades it was home to an organization that offered support and integration assistance for disabled people. But in 2011, the organization vacated the property because Pommer refused to bring it up to code.

RELATED: 'High Castle' producers destroyed every swastika used on the show and the video is oh-so satisfying

In 2017, the fight between the government and Pommer ended with it seizing the property. Authorities said it would get a "thorough architectural remodeling is necessary to permanently prevent the recognition and the symbolism of the building."

Now, the government intends to turn it into a police station which will surely deter any neo-Nazis from hanging around the building.

Austria has strict anti-Nazi laws that aim to prohibit any potential Nazi revival. The laws state that anyone who denies, belittles, condones or tries to justify the Nazi genocide or other Nazi crimes against humanity shall be punished with imprisonment for one year up to ten years.

In Austria the anti-Nazi laws are so strict one can go to prison for making the Nazi hand salute or saying "Heil Hitler."

"The future use of the house by the police should send an unmistakable signal that the role of this building as a memorial to the Nazis has been permanently revoked," Austria's IInterior Minister, Wolfgang Peschorn said in a statement.

The house is set to be redesigned following an international architectural competition.

Communities
via Chela Horsdal / Twitter

Amazon's "The Man in the High Castle" debuted the first episode of its final season last week.

The show is loosely based on an alternative history novel by Philip K. Dick that postulates what would happen if Nazi Germany and the Empire of Japan controlled the United States after being victorious in World War II.

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Politics
via Mike Mozart / Flickr

Chick-fil-A is the third-largest fast food chain in America, behind McDonald's and Starbucks, raking in over $10 billion a year.

But for years, the company has faced boycotts for supporting anti-LGBT charities, including the Salvation Army, the Fellowship of Christian Athletes, and the Paul Anderson Youth Home.

The Salvation Army faced criticism after a leader in the organization implied that gay people "deserve to die" and the company also came under fire after refusing to offer same-sex couples health insurance. But the organization swears it's evolving on such issues.

via Thomas Hawk / Flickr

The Fellowship of Christian Athletes explicitly announced it was anti gay marriage in a recent "Statement of Faith."

God instituted marriage between one man and one woman as the foundation of the family and the basic structure of human society. For this reason, we believe that marriage is exclusively the union of one man and one woman.

The Paul Anderson Youth Home teaches boys that homosexuality is wrong and that same-sex marriage is "rage against Jesus Christ and His values."

RELATED: The 1975's singer bravely kissed a man at a Dubai concert to protest anti-LGBT oppression

In 2012, Chick-fil-A's CEO, Dan Cathy, made anti same-sex marriage comments on a radio broadcast:

I think we are inviting God's judgment on our nation when we shake our fist at Him and say, "We know better than you as to what constitutes a marriage". I pray God's mercy on our generation that has such a prideful, arrogant attitude to think that we have the audacity to define what marriage is about.

But the chicken giant has now decided to change it's says its charitable donation strategy because it's bad for business...Not because being homophobic is wrong.

The company recently lost several bids to provide concessions in U.S. airports. A pop-up shop in England was told it would not be renewed after eight days following LGBTQ protests.

Chick-fil-A also has plans to expand to Boston, Massachusetts where its mayor, Thomas Menino, pledged to ban the restaurant from the city.

via Wikimedia Commons

"There's no question we know that, as we go into new markets, we need to be clear about who we are," Chick-fil-A President and Chief Operating Officer Tim Tassopoulos told Bisnow. "There are lots of articles and newscasts about Chick-fil-A, and we thought we needed to be clear about our message."

RELATED: Alan Turing will appear on the 50-pound note nearly 70 years after being persecuted for his sexuality

Instead, the Chick-fil-A Foundation plans to give $9 million to organizations that support education and fight homelessness. Which is commendable regardless of the company's troubled past.

"If Chick-Fil-A is serious about their pledge to stop holding hands with divisive anti-LGBTQ activists, then further transparency is needed regarding their deep ties to organizations like Focus on the Family, which exist purely to harm LGBTQ people and families," Drew Anderson, GLAAD's director of campaigns and rapid response, said in a statement.

Chick-fil-A's decision to back down from contributing to anti-LGBT charities shows the power that people have to fight back against companies by hitting them where it really hurts — the pocket book.

The question remains: If you previously avoided Chick-fil-A because it supported anti-LGBT organizations, is it now OK to eat there? Especially when Popeye's chicken sandwich is so good people will kill for it?

Lifestyle

Oh, irony. You are having quite a day.

The Italian region of Veneto, which includes the city of Venice, is currently experiencing historic flooding. Venice Mayor Luigi Brugnaro has stated that the flooding is a direct result of climate change, with the tide measuring the highest level in 50 years. The city (which is actually a collection of 100 islands in a lagoon—hence its famous canal streets), is no stranger to regular flooding, but is currently on the brink of declaring a state of emergency as waters refuse to recede.

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The Planet