AUTHOR'S NOTE: Seven days ago, I published this article on Forbes. It generated some of the most heartfelt, personal, and emotional comments I've ever received. I've included some of the below, so you can understand the urgency of supporting these people.
Perhaps 20 million people worldwide have had their lives curtailed by what I'm calling the Anti-Initiative disease. (In a moment, I'll tell you its more traditional names.)
This disease is horrific in that it literally punishes its victims when they display initiative. For example, if a patient who can't get out of bed for weeks then has a good day and decides to go sit in her backyard, she may then be dramatically worse for months.
A committee that studied this affliction suggested that it should be called "systemic exertion intolerance disease, or SEID... (because this) name captures a central characteristic of the disease: the fact that exertion of any sort— physical, cognitive or emotional—can adversely affect patients in many organ systems and in many aspects of their lives."
In other words, it punishes initiative of any sort.
Last week, I came face-to-face with the devastating nature of this disease when I attended a private FiRe Films Sundance screening - moderated by Managing Director Sharon Anderson Morris - of a new documentary, UNREST.
The film is a brave work of humanity by Jen Brea, who directed the documentary from her bed, because she has the disease. After the screening, Jen and her husband Omar Wasow joined us to explain that this disease affects perhaps 20 million people worldwide, yet is almost starved of funding to seek potential cures.
You can read more about Jen's work and her experiences in my original LinkedIn article.
Here are a few more sobering facts from the 2015 Institute of Medicine report I referenced above:
The disease affects 836,000 to 2.5 million Americans.
• An estimated 84 to 91% of people with it have not yet been diagnosed, meaning the true prevalence of this disease is unknown.
• At least one-quarter of patients are bed- or house-bound at some point in their illness.
• Symptoms can persist for years, and most patients never regain their pre-disease level of health or functioning.
• Patients experience loss of productivity and high medical costs that contribute to a total economic burden of $17 to $24 billion annually.
Professor Ron Davis is a renowned geneticist and director of Stanford’s Genome Technology Center; his son, Whitney, suffers from a particularly severe case of this disease. He believes - I'm paraphrasing here - that the disease may be a reaction by the human body to one of many different types of shocks, which could include a virus, severe injury, extremely high fever, or other "attack" that the body perceives and tries to protect itself from.
When you think about it, this means that any of us could be a victim of this disease that would strip away our ability to exhibit initiative of nearly any sort.
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To make matters worse, nearly everything has conspired to leave this disease's victims without hope.
It receives nearly no funding from the National Institute of Health. It is difficult to diagnose and its symptoms are sometimes ignored or belittled by physicians. Despite many fine and well-meaning efforts, the few organizations that advocate for patients have been largely ineffective in generating the funding necessary to make significant progress.
Finally, its name only reinforces these problems. It used to be called Chronic Fatigue Syndrome (CFS), which led some comedians and talk show hosts to make fun of "really tired" people who don't feel like going to work.
Watch Jen Brea courageously film herself unable to lift her head off the floor and tell me she is just lazy.
More recently, the disease has been called Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). That's just barely better.
This disease kills initiative. It destroys human talent in a most insidious way, because its victims still have their inate talents, but they can't use them. Jen describes lying in bed for most of two years, saying, "It was like I had died but was forced to watch as the world moved on."
This disease needs a world-changing entrepreneur with money, connections, and audacity. It needs someone to lead the charge, to stop waiting for the NIH or other government bureaucracies to wake up, and to get hundreds of millions of dollars in place now.
Twenty million people are watching the world go by, waiting for someone like you.
If you step up, I'll help. I'm not asking you to do something I won't do myself, but we need someone with skills I - and others - lack.
Twenty million innocent souls need someone who simply will not tolerate this sort of suffering, and who has the talent and chutzpah to knock down every obstacle that dares to enable this sort of suffering.
Solve ME/CFS is fighting to create a world that is free of this disease
A Sudden Illness was written by Laura Hillebrand, author of Seabiscuit: An American Legend; and describes her personal battle.
UNREST is now scheduled to be shown on PBS early in 2018. Sign up to receive more information.
READER COMMENTS:
Marija Miosic: I am quietly dictating this to my smartphone, lying on my side in a darkened room which I haven’t left in 4 years. Light from the screen is hurting my eyes.
My legs feel like there are 100 vibrating cell phones stuck in them, while all of my joints ache. This disease is living death, and somehow everyone has forgotten about us.
All I have strength left to say is “Thank you.”
Heidi Hayward: Thank you. I got sick with ME at age 25, in the prime of my life, and there are people who still accuse me of faking it 12 years later. I’m homebound and mostly bedbound, needing caregivers to care for me. I have never seen a proper ME specialist because there are none in my state, and Medicaid would never cover it. I’ve been effectively without any treatment for 12 long years. I’ve changed everything in my power to control: ketogenic diet, don’t smoke, don’t drink, don’t eat sugar or caffeine, and it only helps a little. I need treatment. I often feel invisible. Thank you so much for telling people about us.
Patricia Wilson: ...I have been affected 23 years as of next month after an intense flu-like viral episode. I have repeatedly attempted to return to work, full-time or part-time, and each attempt left me sicker than before.
NIH spends more on research for male pattern baldness and for hayfever than for understanding this widespread condition that devastates lives. SHAME!
The good news is science has new tools in spectroscopy, functional brain imaging, metabolomics and translational genetics to study us. My only hope.
C Steckel: Myalgic encephalomyelitis (ME), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport as well as cardiovascular abnormalities. The disease affects people of all ages, genders, races and economic levels.
The International Consensus Criteria (ICC) written by experts shows the complexity of myalgic encephalomyelitis, but is specific enough to identify with good accuracy those who have myalgic encephalomyelitis.
Post Exertional Neuroimmune Exhaustion is the hallmark symptom. The ICC written by the experts explains this symptom and the rest of the symptoms that combined characterize this disease as a specific entity.
Kristine: THANK YOU for this article!! As a 17-year veteran of this life-halting nightmare of a disease, awareness in a magazine of this caliber gives me hope I haven’t had in a very long time. I am a forced-to-retire athlete and teacher; I was a world champion equestrian competitor and coach. I mourn my life every single day. Not just my work. My friends who slowly have disappeared. My marriage wrecked by the stress of this disease. My volunteer work. My health. My potential to use what life has taught me to make the world a better place. My finances swallowed up just to keep me minimally functional and as permanently undamaged until a treatment or a cure is discovered. But a treatment first must be researched and governments all over the world have failed this community of millions of highly intelligent, highly motivated, people. I pray that you healthy entrepreneurs with the financial resources and connections will take up this challenge and not keep us waiting on governments who continue to fail us. Thank you.
Ali Head: Wow! I find myself in tears again… third day in a row. First seeing Jen’s TED Talk reach 400,000 views. Second U.K. BBC News accurately reporting a dedicated research centre in Norfolk UK opening ad the associated research happening by patient funded charity run by Volunteers Invest In ME and today – you Bruce Kasanoff. Can I dare to dream that after twenty years, one day I won’t feel unwell and I may get my life back? Thank you….so much..
Claudia Rose Goodell: GRATITUDE for this article AND IT’S TITLE! Eleven years after my diagnosis with ME/CFS there is finally awareness in a magazine of this caliber. I am a forced-to-retire audiologist with experience in the pharmaceutical industry, and a psychology and American Sign Language background who also volunteered for various national outreach programs. Every day for eleven years I have missed the aspects of my life that I’ve been forced to sacrifice because of this disease and the absence of treatment and care. These are things like work, pay and other reward, adventure, travel, volunteering, educating, socializing, and physical activities. Because of this disease I am not afforded the ability to live up to my potential and that is torturous.
Many of us believe that Drs. Davis, Naviaux, Fluge and Mella, Armstrong, Montoya, Klimas, Younger, Hanson, Bateman and others are closer to finding answers than we’ve been in decades. Your timely investment can make this happen.
Toki Doki: The language that you’ve used in this article is powerful and can make a difference. There is so much research going on at the moment that is giving us more understanding and shedding light on possibilities for treatment of ME/CFS. But for change to happen this disease needs more funding. For funding to come it needs to go from being overlooked or the butt of the joke to being seen as a horrific disease that can be solved as you have outlined in this article. Researchers and entrepreneurs should be excited about the opportunity to save the lives of millions but they need to know about it first. I would do it myself but I’m a sufferer and after the exertion of writing this comment my body is shutting down, my spinal cord is on fire and I need to go and lie in a dark room for the rest of the day. But, I still have hope that the perception of this disease can be changed and that treatments are just around the corner… with a little support we can get there. To anyone reading this… please take whatever action you can. Thank you.
