JANUARY 2, 2012 2:18PM
ME/CFS: Into 2012 without Cure or Care
By Llewellyn King
It's an indecent disease, shrouded in mystery, endless in suffering,
in stigma and in despair. It's a life sentence and many of those who
are afflicted take their own lives, according to patient advocates.
Witness this e-mail I received from a woman on New Year's Eve: "Today,
December 31, is my birthday. I will not get to eat out, have a party
tonight. ... I am not sure I can hang on another year, when every day
is so hard to get through. Just a few weeks ago, a doctor laughed at
me and said there was no such thing as [my disease], and my husband
just sat there, not once backing me. That was more hurt than I can
carry for another year. I pray every night, 'Now I lay me down to
sleep and please, Lord, take me before I wake.' "
This scourge, this foul and stealthy confiscation of life, is so
little understood that there's even confusion about its name.
In the United States, the disease is known as Chronic Fatigue Syndrome
(CFS): a bland and trivializing nom de plume bestowed on the disease
by the Centers for Disease Control in Atlanta. Elsewhere in the world,
it's known as myalgic encephalomyelitis (ME). American patients tend
to use both names and the acronym ME/CFS.
I've been writing about ME/CFS for three years. But in more than 50
years of journalism, I've never had so much reader response. So many
cries from the heart. So much gratitude for doing so little.
The disease is socially ecumenical and afflicts an estimated 1 million
people in the United States and 17 million worldwide. I hear from a
great cross section of the ME/CFS community who have access to a
computer and are well enough to use it. There are many sufferers who
aren't well enough to e-mail; they're severely debilitated and
bedridden for months and years.
Deborah Waroff, a colleague of mine from the 1970s, who's been sick
for more than two decades, describes a period of total disability she
suffered in 2003 and 2004, when she lay on her apartment couch too
sick even to watch television, as "lying in your own coffin."
There is no known route to infection, no diagnoses and no cure.
Research has been scattered and funded grudgingly at such low levels
that Dr. Fred Volinsky of Boston has calculated annual federal funding
for ME/CFS at only $1.25 per patient compared to $400 for multiple
Last year was especially sad because many patients and some
researchers had pinned their hopes on a retrovirus called XMRV. Most
of the work on this line was done at the Whittemore Peterson Institute
in Reno, Nev., a private research facility founded by the Whittemore
family. It now appears that promising conclusions were the result of
laboratory contamination, and a paper in Science magazine had to be
withdrawn. Worse, there's an ugly dispute between the institute and
its former chief research scientist Judy Mikovits. Because there's
low-level contagion in families and cluster outbreaks of ME/CFS, the
idea that there's a virus at work can't be discredited entirely.
There are parallels as well as dissimilarities to the early days of
the AIDS. For AIDS, the stigma was sexual; for ME/CFS, the stigma is
As doctors have no diagnostic procedure for ME/CFS, they dismiss it as
imaginary, psychosomatic or sloth. Families believe the disease is
sloth: Sons have written to me because their fathers disowned them,
believing that they are just layabouts.
Some sufferers are homeless, according to Dr. Leonard Jason of DePaul
University, abandoned to life on the streets. He tells of one
unfortunate living in a car.
Hospital emergency rooms have no tools, no knowledge. In the frenzy of
the just-in-time nature of emergency room medicine, there's no care
there for ME/CFS victims. There's precious little in the way of
charity funding or home visits, unless the patient has family support
they are on their own, alone.
A cure this year is unlikely, but better understanding can start today. Now.
Wanted: A high-energy, high-profile celebrity to do for ME/CFS what
Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular
dystrophy, and what Michael J. Fox is doing for Parkinson's: raising
concern, raising money and banishing stigma. Fox has raised $264
million for Parkinson's. By contrast, the Chronic Fatigue Immune
Deficiency Syndrome Association targeted raising just $2 million for
research last year.
Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly.