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| Mindy Kitei speaking before the CFSAC |
Mindy Kitei is a science reporter who has been covering CFS/ME for more than 20 years. Her commitment to people with CFS/ME has been unflagging, and her barbed criticism of the CDC's mishandling of the CFS/ME epidemic has been continual over the course of her career. On May 12, 2011, she delivered this fiery public comment at the CFS Advisory Committee (CFSAC) meeting.
" To the CDC and NIH scientists who have been ... sweeping a world-wide human catastrophe of 17 million people under the carpet, I say to you, 'Have you no sense of decency?'"
Full Text:
My name is Mindy Kitei.
I’m a science reporter who’s covered ME/CFS for twenty years.
Last June, I began my blog, CFS Central, in honor of my friend Nancy
Kaiser.
I met Nancy in 1994,
while working on an investigative piece for Philadelphia magazine
called “The AIDS Drug No One Can Have” about the experimental HIV
and ME drug, Ampligen.
Nancy had a severe case
of ME. She had multiple seizures every day. When she tried to sit or
stand, her blood pressure plummeted; she often crawled instead. She
tried many experimental treatments to get well.
Nancy died on June 15,
2008. I naively thought she’d never succumb to the illness,
as if by sheer will she’d keep herself alive.
Three other ME patients
whom I interviewed in 1994 have also died of the disease.
Despite its gravity,
despite ample evidence that ME is an infectious disease, the
government treats it like a joke. The CDC and parts of the NIH have
been playing a shell game: studying patients with simple
fatigue or chronic fatigue or depression—but labeling them
CFS patients.
Even when the CDC
conducted its XMRV study, it studied the wrong cohort and refused to
do an actual replication of the Science study.
It’s just a different kind of shell game from the bogus
psychological CFS studies that are the agency’s trademark.
To the CDC and NIH
scientists who’ve been doing this ludicrous research for three
decades and sweeping a worldwide human catastrophe of 17 million
people under the carpet, I say to you: Have you no sense of
decency at long last?
ME patients are suffering
from a serious infection— most likely a retrovirus—but are told
by charlatans to exercise and have a positive attitude.
Researchers in government
and at universities, as well as the CFIDS Association, admonish
desperate patients that taking anti-retroviral drugs is medically
indefensible. When the healthy reprove the sick that they’re
impatient and reckless and foolish and need to wait for treatment, I
say there is no treatment, and where are the drug
trials? Thirty years and not one approved drug and none in the
offing.
ME patients should have
the same freedom to try medications that AIDS
patients had in the early days. The AIDS patients became their
own advocates because there was no one advocating for them.
The same holds true for ME patients now. Patients are gravely ill,
and they have the right to treatment. To say that they
don’t—that’s what is medically indefensible.
The U.S. government
conducted the Tuskegee Syphilis Experiment from 1932 to 1972.
The study tracked the progression of untreated syphilis among poor
African American men but didn’t tell them they had syphilis. The
men got sicker and many died.
In 1997, President
Clinton apologized to the remaining Tuskegee men. Clinton
said: “What was done cannot be undone. But we can end the
silence. We can look at you in the eye and finally say on behalf of
the American people, what the United States government did was
shameful, and I am sorry.”
The United States
government has watched ME patients suffer and die for 30 years, and
has done nothing, and that is shameful.
In less than a year, more
than 125 thousand patients from 108 countries and territories have
found my blog, CFS Central. Patients write to me asking for
help every day. Toward that end, I request a meeting with
Kathleen Sebelius, Howard Koh, Francis Collins, Tony Fauci and Thomas
Frieden to discuss how to turn this situation around, by funding good
studies and finding effective medications.
About funding ME, Dr.
Dennis Mangan said during this meeting: “We’ll use one
dollar and try to make two.” I’m sure Dr. Mangan
means well, but it isn’t enough. As AIDS activist Larry
Kramer said years ago about HIV patients: “We are not
crumbs.” After thirty years of neglect, ME needs research parity
with HIV. We also need a czar who will oversee ME and report directly
to President Obama.
Finally, we need to enact
the ME/CFS Care Act. Much like the Ryan White Care Act for HIV
patients, the ME/CFS Care Act will provide health coverage to needy
patients.
In closing, I ask you,
Dr. Wanda Jones, to ensure that this meeting occurs. Dr. Jones,
will you help me?
Visit Mindy Kitei at: http://www.cfscentral.com/