A different voice will be heard on Capitol Hill on May 12 to 15: a gentle, sad voice coming not from lobbyists or politicos but from an irregular army of sick people. It is a voice that has grown stronger in recent years but is still just a zephyr among the hurricane winds that blow in Congress. For Congress, it will be an invasion of sighs.
They will be on the Hill to petition their government for more research funding for the disease Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).
They will not be coming with checks for campaign coffers, nor with partisan arguments, but simply to make their case that the federal government should put ME on a par with diseases of similar devastation and increase the minuscule funding. They also want Congress to use its bully pulpit to preach a message of urgency and need.
ME is not a new disease, but it has been one of the most neglected. Many believe Florence Nightingale, who was born on May 12, 1820, was a sufferer. The day of her birth has significance for sufferers and their caregivers.
ME is a mystery disease of the immune system, felling patients of all ages and both sexes.
Some are bedridden for a couple of years and then improve enough to partake in very limited activities, others languish and are totally dependent on families and charities. Some are hypersensitive to sound and light: I know about a young man who was forced to seek dark and quiet in a closet.
In California, Tom Camenzind, a former Stanford University student, lies in bed so physically incapacitated that he is only able to communicate by a sensor attached to his finger. Tom’s exceptional parents, Dorothy and Mark, allowed me to bring a television camera into his bedroom last year to help the cause.
Others manage somewhat better but are shackled to their illness, never able to escape it. A small amount of physical exercise can send them to bed for days, as can a night out with friends. There is no known cure and no easy identification of the disease.
To get the disease is to be imprisoned by it, to serve a life sentence without parole. Sufferers live and do not live; they endure brain fog, severe headaches, aching joints and exhaustion beyond comprehension.
I have been writing and broadcasting about ME for nine years and many correspondents tell me they pray not to wake up in the morning. Suicide rates are said to be high among the sufferers.
Anita Patton of Incline Village, Nevada, was struck down, as many are, in her prime, writes, “Thirty-two years ago, I came down with a viral disease that wiped out my energy and immune system.” She suffers to this day.
Like many other patients, Patton began a long odyssey in search of a diagnosis. Eventually she found Dr. Daniel Peterson, a clinician who has devoted his life to ME. She moved close to his practice.
Peterson has been treating Patton with Ampligen, an experimental and expensive drug. It has enabled her to function, so long as she gets regular infusions. But the hard-to-get drug is not a cure. It suppresses symptoms in a subset of patients and it, like every other aspect of this scientific enigma, needs study.
A volunteer organization, #MEAction, will hold demonstrations across the United States and the world May 12 under the rubric “Millions Missing.”
These will be followed by a serious lobbying effort May 15, led by the advocacy group SolveME/CFS Initiative. It already has signed up nearly 100 patients, caregivers and activists to call on members of Congress, asking for recognition and explaining that they suffer from a disease that has been described as hidden in plain sight. Visibility is the first step.