A Job for a Lone Congress Member – Speak Up for ME/CFS, a Forgotten Disease

Contact your Congressional Delegation – Share Llewellyn King’s article and ask them to speak up for ME/CFS

Please find your Congressional delegation by typing your zip code, then copy and paste the following text into the contact forms.
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Attention: Legislative Assistant for Health
Please read the following article from Llewellyn King about the devastation experienced by the victims of the disease, Myalgic Encephalomyelitis, also called ME/CFS.
For thirty years, these terribly disabled patients have tried to advocate to get Health and Human Services to commit the resources needed to understand the disease and identify treatments. But HHS has ignored them and ME/CFS patients have been left to suffer for decades; marginalized, stigmatized and mistreated.
ME/CFS patients need your help to require HHS to finally commit research funding at a level commensurate with the awful burden of this disease.
A Job for a Lone Congress Member: Speak Up for a Forgotten Disease
Llewellyn King
June 2, 2015
Published on The Hill’s “Congress Blog.”
Wanted: Member of Congress prepared to take up a cause.
Political party affiliation: Unimportant.
Geographic representation: Unimportant.
Fund-raising potential: Minimal.
Reward: Undying gratitude, lavish praise, thanks beyond counting.
Job description: In any way you can, draw attention to a debilitating, life-abducting disease. Work to persuade federal government medical agencies to adequately fund research for a cure.
The cause is research on Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome — and often known by both sets of initials as ME/CFS. It’s a disease I know quite a lot about because I’ve been writing and broadcasting about it for the last five years.
As many as 1 million Americans — and 17 million or more worldwide — are afflicted with ME/CFS. There is no known cure, no easy diagnosis and hardly any examples of recovery. The victims’ suffering is huge, endless and hidden in plain sight. Doctors have told me that they’d rather have cancer than ME/CFS.
Make no mistake, ME/CFS is a life sentence without parole. It can strike the young, the middle-aged and the old. More women — by about two-thirds — than men are affected, and there is no known causality.
Mostly ME/CFS has stricken people who have no commonalities, like an environmental hazard or a geographic location. Yet there are clusters. Three dominate the history without explanation and in very different locations, with very different socioeconomic backgrounds, and life styles.
The first large, modern outbreak was at the Royal Free Hospital in London in 1955. The two largest U.S. outbreaks, with hundreds affected, were in upscale Incline Village on Lake Tahoe, Nev. and Lyndonville, a hardscrabble town in upstate New York. The Incline Village outbreak was in 1984, and Lyndonville’s was about a year later. In each location about 300 people, mostly children, were affected and they suffer to this day.
ME/CFS victims — most of whom can tell you the date and time of their first collapse — don’t recover with time. They have good days and bad days, good years and bad years; but no great days and great years. Being bedridden for two years is common during bad periods.
Often, the onset follows flu-like illness. Patients may recognize that they have ME/CFS after a total collapse, following exercise (a game of tennis, soccer, skiing) — a debilitating crash necessitating bed rest. Exercise and motion become an enemy.
Patients have constant headaches, joint pain, mental fog and sensitivity to light and sound. I know of one patient who lies in a closet all day with no light or sound because these affect him so horribly.
A close friend, a competition-level athlete and a Wall Street analyst, has been ill for 25 years. She trades off small joys, like going to the theater or shopping, for several days of collapse and bed rest. Sleep fails to refresh. She describes herself as a vehicle without fuel, getting by on “fumes.”
Suicides are common, and I’ve received letters from women who just want to die. Dramatically, one woman says she prays to God every night that she won’t wake up in the morning.
But ME/CFS holds on for victims, forcing them to exist in a shadowy place of pain, hurt and rejection. Families are wrecked, lovers give up, and marriages are brought down by the relentlessness of the need. The caregivers suffer the burden for decades.
Some of the most graphic and heart-breaking letters I’ve ever received in nearly 60 years of journalism come from patients. But they have no central voice, no national association. And while there are some dedicated doctors and researchers, ME/CFS isn’t taught in medical schools. So largely, doctors aren’t aware of the disease.
ME/CFS has fallen on the hard ground between despair and hopelessness. It is known to suppress the immune system and to be linked to Fibromyalgia.
Yet, for all the hurt, the principal medical research arm of the federal government, the National Institutes of Health, spends a paltry $5 million a year on ME/CFS – an indictment of institutional indifference. Without a strong congressional advocate, or a lobby in Washington, the research dollars won’t flow and hope will perish for patients.
ME/CFS is a good issue for an aspiring politician who wants to be heard and who could do real good by pushing federal government institutions toward helping the voiceless — those who can only murmur in their pain and loneliness, when louder shouters get tens of millions of dollars more research funding.
King is executive producer and host of “White House Chronicle” on PBS. His e-mail is [email protected].


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