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?
CFSAC Meeting Minutes: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac-meeting-minutes_20110511.pdf