Join us in San Francisco on May 12!
May 12 is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Day. It was founded by a Californian, Tom Hennessy, Jr, to draw attention to the illness. (Although Towel Day is recognized by the US Government on May 25, May 12 International ME/CFS Awareness Day is not.)
On Monday, May 12, 2014, from noon -1 PM, there will be a gathering at the Federal Building located at 90 Seventh Street in San Francisco. The theme of this event is “30 Years of Neglect.”
To drive home the point that ME/CFS is a serious disease that not only disables, but can be fatal, we will be displaying pictures of people who have died of ME/CFS in empty wheelchairs. We will read their obituaries. Afterwards, we will go to McKesson Plaza, 5 blocks away, to take our message to Senator Dianne Feinstein.
This will be a peaceful demonstration (we have a permit). Friends, family and supporters are welcome!
For more information, please contact Erica Verrillo at firstname.lastname@example.org
What is myalgic encephalomyelitis, and why should you care about something you can’t pronounce?
Nobody is willing to wrap their tongue around anything that requires 11 syllables. But that is not why Steven Straus at the NIH decided to “rebrand” myalgic encephalomyelitis (ME) as “chronic fatigue syndrome” in 1987. He wasn’t verbally lazy. He was nefarious.
The name that Straus chose for this illness has resulted in decades of misconceptions. So, you’re tired? Everybody is tired, and besides, being tired won’t kill you.
Both of these assumptions are wrong. Chronic fatigue syndrome does not make people tired. It is a neurological illness that produces inflammation in the brain. The inflammation is the result of an acquired immune system dysfunction that leaves people unable to control latent viruses. (There are eight different herpesviruses that remain in your body for life.) Once these viruses begin to proliferate, they interfere with energy production at the cellular level.
The reduction in cellular energy causes mayhem in the body. Your heart can’t function normally, so blood flow is decreased. Lower blood flow leads to orthostatic intolerance – the inability to stand up. Reduced blood flow also means you can’t think properly. Students who contract the illness have to drop out of school. Adults lose their jobs.
As heart and brain function decline, people with the illness can’t perform any kind of physical or mental exertion without getting a lot worse. In severe cases, people can’t even brush their teeth.
In some cases, particularly when the nervous system inflammation becomes widespread, the patient dies. That is what happened to Phil, who died at the age of 17 a year and a half after falling ill.
How misleading is it to name a disease that can kill a healthy teenager after only 18 months “chronic fatigue syndrome”?
A little history
To understand why the department of Health and Human Services (HHS) decided to bury this illness with a silly name, we have to go back to 1934, to the Los Angeles County Hospital. In that year, a polio epidemic was raging through California, claiming hundreds of lives. In 1934, 198 staff members at the LA County Hospital were struck. But they did not develop paralysis, nor did they die. They suffered from a range of symptoms that included weakness, easy fatigability, exercise intolerance, and photophobia, all of which suggested a neurological disease – like polio. But their symptoms did not resolve over time.
It was not polio. The physician who reported this mysterious epidemic, Dr. Alexander Gilliam, called it “atypical polio.” Eventually, two of the doctors who had fallen ill sued. They each won two million dollars – an enormous amount of money in those days.
As the epidemic of “atypical polio” spread around the Northern Hemisphere, increasing numbers of people were struck. In 1955, there was an epidemic in Royal Free Hospital in London. Like the LA epidemic, there was a high attack rate among hospital personnel. The investigating physician, Dr. Melvin Ramsay, called it “myalgic encephalomyelitis,” meaning pain accompanied by inflammation in the brain and spinal column. He noted that the symptoms of ME exactly replicated those of the LA County Hospital outbreak.
Since then, there have been over 60 outbreaks of ME, but the one that drew media attention in the US was the Incline Village outbreak in 1984. Two doctors, Dr. Dan Peterson and Dr. Paul Cheney, began seeing patients with a peculiar illness. The illness caused easy fatigability, weakness, pain, sleep disorder, and a spate of neurological symptoms. It got worse with exercise. Over that summer, hundreds of people were struck. The doctors were sure that it was an epidemic, and that it was caused by a pathogen affecting the central nervous system. They called the CDC.
The CDC showed up eventually, but they refused to examine any of the patients. Steven Straus called it a disease of “depressed menopausal women.” HHS made this characterization known to the press, which then dubbed the disease “yuppie flu.”
Once it was sufficiently discredited, “CFS” could be safely shoved under the rug for three decades.
The first illness to be blacklisted
Since the 1984 Incline Village outbreak, over one million people in the US have contracted the disease. Between 17 and 20 million people have ME worldwide. The economic losses are staggering – $17-23 billion dollars annually in the US alone.
But over most of the past 30 years NIH has spent nothing on research for the disease. This year it reserved $5 million, or less than $5 per person. In contrast, the NIH is spending more than $2.7 billion on AIDS, which has a comparable prevalence.
This paucity of expenditure has slowed serious scientific research. In addition, because there is no money for research, researchers and clinicians at academic institutions are discouraged from studying the disease. Doctors in major hospitals are told not to treat it, because insurance companies won’t pay for an illness that has “no cause and no cure.” And peer-reviewed journals will not publish research papers on the illness.
In short, the illness has been blacklisted. And the reason is not simply because HHS is incompetent, or because it feared yet another AIDS-like epidemic – although those things influenced its decision to do nothing. The reason HHS has spent thirty years in denial stems from those two doctors who received $4 million after the 1934 LA County outbreak. From that point on, this illness has been on the radar of insurance companies.
It would be a mistake to think that HHS operates without input from the insurance industry. And it would be a mistake to believe that the insurance industry – which has spent 30 years refusing to cover patients with the illness, and has hired physicians to dismiss the disease as “all in your head” – is not panicked by Obamacare. With over a million sick with ME, and a quarter of those unable to get out of bed, they stand to lose billions.
Why should you care about something you can’t pronounce?
You could be next
ME is not a disease that affects only white, middle-aged, affluent women. According to a community study conducted by Jason et al, the majority of the people who fit the case definition are non-white, and from lower income groups.
Nor does it only affect adults. In the 1985 Lyndonville, NY outbreak, half of the victims were children (equally divided between boys and girls). Of the adolescents who contract ME, 17% get it after mono.
Nor is ME typical of “type A” personalities. Dr. John Richardson found that after an epidemic of Coxsackie virus, 24% of his patients developed ME. These were just average people, with normal lives -students, nurses, teachers. Once they were struck with this illness, their lives came to a screeching halt.
ME doesn’t care what you call it, or what doctors, HHS officials, or the media thinks about it. ME is a disease that is spreading. It can cause permanent disability, and it can kill.
Isn’t it time HHS did something about it?
For more information, please contact Erica Verrillo at email@example.com