By Llewellyn King
Published October 8, 2010 – 1:58 pm
I've been walking on the sad side. My mailbox is jammed with dozens of
heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS);
a terrible disease that is little understood, little researched and
hard to diagnose.
Chronic Fatigue Syndrome, which is known as Myalgic Encephalomyelitis
in many parts of the world, mostly strikes people in their thirties
and forties. The disease begins with flu-like symptoms which are often
a precursor to a full collapse, often after exercise.
The disease largely disables the immune system; and leads to joint and
muscle pain, cognitive dissonance, memory loss, dysphasia and problems
with simple math. Sufferers are often confined to bed for months,
functioning at a substantially reduced capacity, where the simplest
tasks become monumental.
CFS-afflicted authors describe taking years to finish projects that
should have taken months. These include Hillary Johnson, whose book
"Osler's Web" is about CFS; Laura Hillenbrand, who wrote the
bestseller "Sea Biscuit" while struggling with the disease; and
Deborah Waroff, who is writing a book about the Jewish hero Sholom
Schwartzbard, but who has found the task dragging on for years,
working as she can between severe periods of disability, confined to
The human suffering of both the afflicted and those close to them is
incalculable in its awful impact. One woman who e-mailed me wrote:
"When I became totally disabled seven years ago, because I had not
announced my illness previously, nearly everyone I knew figured the
illness was in my head. They were aided and abetted with this sort of
reasoning based on how the majority of the medical establishment and
media had treated CFS. Like many with CFS, I lost all of my companions
and my spouse."
One of the most hopeful of recent discoveries is also generating a
collateral fear. The retrovirus XMRV has been found to be present in
CFS patients and has led them to worry about transmitting the disease
to family members. One woman who e-mailed me from Britain wrote that
her husband contracted the disease after years of nursing her. Who,
she asked, will look after them now?
A sufferer in Maryland wrote to me that she worries about her family.
She and her husband decided to have a child. They were blessed with
triplets – and the return of the mother's disease. Now she worries for
her husband and the three babies.
A man—one-third of victims are male, although the National Institutes
of Health treats CFS as a woman's disease–sums up the anger in the
community towards the political establishment, and particularly the
Centers for Disease Control which changed the name from Myalgic
Encephalomyelitis, in a controversial action.
He wrote: "Washington didn't so much forget – they were never told.
The CDC swept it under the carpet, despite the fact that their main
raison d'être is to investigate and sort epidemics of new diseases
before they take hold. Now, because of the CDC's wrongdoings, there
are more than 1 million people affected in the USA and possibly 17
million worldwide. Most of these people are too sick to stand up for
themselves, to fight back."
Breaking down the e-mails, I find these commonalities:
· Anger at the CDC and, to a lesser extent, the National Institutes of
Health and government in general.
· Tremendous suffering and horrendous problems with affording
treatment; frequent misdiagnosis, as doctors use a "dustbin" approach
that discards all the possibilities until they get to CFS.
· Anger at the media and others for not taking CFS seriously enough.
· The knowledge, with a cure rate of between 4 and 8 percent, that
they are awaiting the inevitable in huge discomfort. They are on
medical death row.
· Sufferers describing themselves as "living corpses." Alone with
their suffering, many commit suicide.
I'm not a medical writer. Writing about medicine has never interested
me. But in a career of writing for newspapers, spanning more than 50
years, I've never received so much mail that has so consumed the
thought process and torn at the heart.
There is a ghastly disease out there that cries out to be taken
seriously, to get proper attention in the medical world, and to be
prioritized along with the other big diseases claiming research