By
by
Llewellyn King
In the world of chronic illness, there is hope and false hope; well-=20
founded hope and dashed hope. New therapies, real or rumored, lift the =20=
spirits of the desperately sick before they are brought crashing down, =20=
when science comes up empty-handed =97 such as when a controlled study =20=
fails to confirm a cure, or even the path to a cure.
This is what has happened this year to "the silent many" =96 people who =
=20
suffer from Chronic Fatigue Syndrome (CFS), also known as myalgic =20
encephalomyelitis. Silent because of all the big diseases, it is =20
probably the least publicized, least talked about, and the most =20
ignored in medical institutions =97 the institutions charged with =20
protecting the public health. There are an estimated 1 million CFS =20
sufferers in the United States, and another 16 million worldwide.
As AIDS was initially, CFS is haunted by fear, stigma and ignorance. =20
It is misdiagnosed and often its victims are abused, thrown out of =20
their families, and live in squalor and pain with little hope. They =20
despair that they cannot convince doctors, their families or their =20
loved ones that they are, in fact, sick.
There is no cure for CFS, just a lot of conflicting theory. There is =20=
nothing on the pharmacists=92 shelves to relieve their suffering. =
Nothing.
There are also powerful economic and institutional forces that have =20
conspired to keep CFS in the shadow; in that world of anguish, where =20
the victims feel they are to blame because they are a burden to those =20=
who love them. The costs of care are crushing.
What is known is that CFS is a disease of the immune system; that it =20
is reported among women by 3-to-1; that it has no cure =97 no certain =20=
day when the monster will leave the sick bed. It ebbs and flows in =20
cycles =97 good days and bad days, good years and bad years. People who =20=
suffer say it confiscates their lives. There are terrible periods when =20=
one is so sick that one is bedridden for months or years.
Most doctors are not qualified to offer CFS diagnoses, confusing it =20
with other conditions. The rural poor are almost entirely on their =20
own. Suicide is common, according to Marly Silverman, a sufferer who =20
heads an umbrella group that calls itself Pandora.
This year has been a mixed year for hope in the CFS community: A whole =20=
line of research has been dashed, and
it a lot of accumulated hope.
Some researchers =97 particularly those at the privately funded =20
Whittemore Peterson Institute in Reno, Nev. =97 had spent great effort =20=
in pursuit of a retrovirus, XMRV. The institute, and its scientific =20
allies, had believed that XMRV was the culprit and that if this could =20=
be proven beyond doubt, then there would be a basis to develop an =20
antiviral agent to arrest the disease. But separate studies in the =20
United States and Britain have undermined the XMRV hypothesis, leaving =20=
the hopeful bereft.
At the same time the use of an experimental drug, Ampligen, is helping =20=
a patient elite of about 750: They can get the drug in limited trials =20=
and can expect to pay between $25,000 and $40,000 a year for it. =20
Ampligen's manufacturer is a small company, Hemispherx, which has to =20
charge its trial subjects. Unlike large drug companies, Hemispherx =20
cannot administer Ampligen in trials for free, and it needs much more =20=
clinical data before it can get full Food and Drug Administration =20
approval.
Ampligen bolsters the immune system: While being treated with the =20
drug, patients report an abatement of symptoms, greatly improving the =20=
quality of their lives.
Now comes extraordinary news out of Norway, where a drug developed for =20=
Non-Hodgkin=92s lymphoma, Retuxin, has produced gratifying results. A =20=
Bergen hospital study of CFS patients taking Retuxin found 67 percent =20=
reporting good recovery and sometimes full recovery. One patient, a =20
young girl, went from being bedridden to skiing and a full athletic =20
life.
Retuxin suppresses a portion of the B-cells among sufferers, =20
suggesting that it is rearranging the immune system by correcting =20
imbalances in its function.
Promising though Retuxin is, the cost is staggering: Treatment costs =20
$70,000, if you can get it.
These drugs, Ampligen and Retuxin, with their hint of hope in a dark =20
sky, raise a basic societal issue: Is it better for society to pay to =20=
make hundreds of thousands of citizens well enough to work, or is the =20=
externality of lost work too hard to figure into
=20=
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