An Editorial on
Homographs and Outside Voices
It’s an odd thing looking back at this disease, realizing that 17 million patients all over the world have waited for help for decades, their pain and disability steadily worsening until for many that's all they have left. Along the way, thousands have died of lymphomas, heart failure, heart attacks, suicide, pneumonia. Many spouses have deserted them, many friends have written them off as malingerers or head cases.
Georgia resident Leanne Hyneman, whom I interviewed in 1994 for an
investigative article I wrote for
Philadelphia magazine on the experimental ME/CFS and HIV drug Ampligen, was the sickest ME/CFS patient I’ve ever spoken with. She was 30 years old in 1994, slept 22 hours a day, rising around midnight, and was cared for by her mother. (Though Ampligen helped many patients, it only made her worse.) She lived with seizures, nystagmus, profound weakness, her teeth broke off at the gum line, but she remained soft-spoken and hopeful despite the living death her life had become. After 20 years of living with ME/CFS, she died of cardiac arrest in 2007 at the age of 43.
What terrible isolation Leanne Hyneman and many others like her have endured every day! At least the Internet has helped mitigate that. Finding XMRV and related retroviruses in patients have helped too. Buoyed for the first time in a long time, patients have been taking matters into their own hands, comparing notes on ME/CFS forums and in private messages and, more recently, shopping for a compassionate doctor who might write them antiretroviral scripts.
Desperate ME/CFS patients plead sotto voce for a triple cocktail of HIV medications and other antivirals like the desperate women of an earlier time who sought clean, illegal abortions from a sympathetic M.D. What person who learns that they’re HIV positive is relieved? But most patients who learn that they’re XMRV positive are relieved, for it’s validation that their illness is in their bodies and not their minds. That ME/CFS still is not acknowledged as a serious and sometimes fatal physical illness remains for many the worst aspect of having it.
Measuring the effects
Given how sick many patients are and how long they have suffered, why the reluctance of some researchers to begin clinical trials? Several test-tube studies have shown that three approved HIV meds—AZT, tenofovir and raltegravir—have efficacy against XMRV.
There’s also clinical data to suggest FDA-approved antivirals like Vistide and B-cell depleters like the cancer and rheumatoid-arthritis drug rituximab may also be effective for ME/CFS. There are markers to chart patient’s progress, including an XMRV viral load test, cytokine panels,
V02 max (maximum capacity of the body to transport and use oxygen during exercise), IQ testing and
actometers, which measure activity level. Desperate patients are experimenting with medications now, but few are monitoring markers, so they’re flying blind.
Of course, these medications may not work and, worse, can cause kidney and liver toxicity and anemia, among other problems. But the scientific community needs to stop wagging a collective finger at ME/CFS patients trying experimental treatments and, instead, begin clinical trials. Paternalistic physicians and researchers have come close to equating antiretroviral therapy with lunacy, calculating the damage it’ll wreak on patients’ already compromised immune systems, cautioning about the early days of HIV drugs, which hurt as many sufferers as they helped. They may be right. These medications may turn out to be the devil for ME/CFS, but no one is going to know without clinical trials.
When the healthy reprove the sick that they’re impatient and reckless and foolish and need to wait for treatment, I say isn’t it funny how healthy naysayers get to enjoy their lives while admonishing the sick to be grateful that life is not any worse. It is sickening. It’s also a way for the fit to distance themselves from those who are suffering. The only people who can put a stop to this paternalism and delay are the patients themselves, by acting up, by challenging every inaccurate and inappropriate comment and action.
Gottesman, Plotz and Straus
Case in point: The National Cancer Institute’s Michael Gottesman told patients before the start of the National Institutes of Health (NIH) XMRV conference that they lost a devoted advocate when the NIH’s Dr. Stephen Straus died. The NIH’s Dr. Paul Plotz made a similar surreal comment last week about the “excellent” work of Stephen Straus on journalist Llewellyn King’s PBS show White House Chronicle. To Michael Gottesman and Paul Plotz I say: “What have you been smoking?” Gottesman and Plotz may be well meaning, but they’re certainly misinformed.
For those who don’t know much about the late researcher who headed up “CFS” research for years at the NIH, Straus holds the distinction as the only physician who seriously injured the health of several patients, during his acyclovir trial in the 1980s. Acyclovir is an antiviral used to treat herpes viruses, including Epstein Barr virus (EBV), which causes mono. ME/CFS patients often have elevated antibodies to EBV, and early on scientists hypothesized that the virus caused the disease. How did Straus injure patients? He didn’t give them enough fluids. It’s acyclovir 101, not exactly brain surgery, to hydrate patients to prevent renal toxicity problems with antivirals.
The Vapors
After the EBV theory fell apart, Straus started blaming patients for the illness. As outlined in Hillary Johnson’s seminal book Osler’s Web, Stephen Straus launched a 1994 ME/CFS workshop with a slide of a Victorian woodcut of a woman recumbent on a couch with her hand clasping her forehead. For Straus and some other government scientists in the U.S., as well as a group of psychiatrists in the U.K., ME/CFS became nothing more than an updated name for the Victorian Vapors.
In 1986, according to Johnson, Straus theorized to fellow physicians: “Maybe these are the individuals who… don’t want to drive their BMW unless they feel up to it, and they need our help to get behind the wheel.” When it came to ME/CFS patients, Straus was misogynistic, cruel and, as he proved in the acyclovir trial, incompetent. That’s who Stephen Straus really was, Dr. Plotz and Dr. Gottesman.
Dr. Elizabeth Unger
Likewise, at last week’s CFS Advisory Committee meeting, the tremulous acting head of CFS research at CDC, Dr. Elizabeth Unger, trotted out the CDC’s usual party tricks: the agency’s fantasy that childhood abuse causes the disease, plus the tried-and-true Cartesian mind-body dualism (though CDC investigates only the mind part). “Enough, Dr. Unger," I wanted to say to her. "This is a physiological illness that’s killed thousands of people in the past twenty-six years. Four of the ME/CFS patients whom I interviewed in 1994 have since died, including my friend Nancy Kaiser. She died in 2008 of pneumonia after struggling with ME/CFS for 33 years. No doubt childhood trauma makes individuals susceptible to any chronic illness, but you don’t see any studies on childhood trauma and contracting HIV, do you? Of course not; it would be absurd.”
Outing gay politicians
Recently I watched a documentary called Outrage. It chronicles the work of gay journalists, bloggers and activists who’ve outed closeted gay politicians—not because they’re gay but because they’re hypocrites, voting against any issue that would afford homosexuals the same rights and protections as heterosexuals. Before AIDS, the late activist Rodger McFarlane says, being closeted was more an issue of privacy. “After AIDS,” he intones, “that was collusion with genocide.”
ME/CFS for many is slowly progressive. After 10 or 20 or 30 years, patients develop cancers, heart disease, heart failure and some die. By denying the reality of what this disease is, by morphing fact into fiction, by playing Animal Farm head games with the CFS case definition (using the “Empirical” definition which isn’t CFS at all but depression), by reciting the spurious childhood-trauma mantra, many government officials in this country and many “CFS” psychiatrists in Great Britain are in my view intentionally or unwittingly committing slow genocide of the 17 million people worldwide with this disease. Many patients have allowed this crime—it is a crime—to continue for years because they’re so sick and because they bought the company line that they’d recover.
The gay reporters and activists in Outrage implemented a strategic shift in their way of thinking once gay men started dying from AIDS. Instead of the hounds chasing the foxes, the foxes turned the tables and started hunting the hounds. This switcheroo has, finally, begun in the ME/CFS community. After
decades of quiescence, of hoping that help was just around the bend, the new mood feels different because many patients have reached critical mass. There is a focused determination to effect change.
Inside voices
The use of “inside voices” that CFIDS Association’s Kim Kenney McCleary advocates in an
aggravating post on the organization’s website may be well intentioned but it’s out of touch with what’s necessary for change. Change won’t come easily. As I’ve said in a previous post, change is
always bitter and bloody, with the old guard on tenterhooks, desperate to stave off its own obsolescence—and to keep its secrets secret. And it will not be easy because adult women comprise the largest segment of this disease, and most girls are taught in childhood to cooperate and not to make waves, and to use their inside voices—even if it kills them.
Few boys are sold that phony bill of goods in childhood. In Outrage, AIDS activist Larry Kramer recalls an incident during the Reagan administration when at a party he ran into Terry Dolan, at the time the head of the National Conservative Political Action Committee. President Reagan still had not uttered the word “AIDS” in public and had done nothing to contain the disease or help thousands of people dying an agonizing death from it. “How dare you come to a party of gay people after what you’re doing to us?” Kramer asked Dolan and threw a drink in his face. “You’re raising money to kill us.”
I’m not advocating throwing drinks in anyone’s face. But I am advocating that patients discard their inside voices every time those in power turn ME/CFS into a benign psychiatric problem when it is, in fact, a severe neuroimmune disease, until scientists get the message that patients aren’t going to put up with the lies and doublespeak anymore, until duplicitous scientists become so embarrassed and beleaguered from being besieged by emails, faxes and phone calls, that they give up the charade or, better yet, retire.
Clinical trials now
At the recent Chronic Fatigue Syndrome Advisory Committee meeting, the National Cancer Institute’s Dr. Stuart LeGrice informed patient advocate Cort Johnson, without any irony: “I don't think this
‘What Have You Done For Me Lately’ campaign is helping. I don’t need to have [NIH Director] Dr. Collins call me and ask me, ‘What are you doing for CFS?’ ” Wow. What a light-bulb moment that was! Clearly, as Cort Johnson pointed out, the campaign
is working.
The next step is standing up to those who deny patients with ME/CFS the clinical trials that they deserve now, not a year from now or five years from now or 25 years from now, or, if the CDC has its way, a week from never. With our government, patients won’t get what they want unless they articulate exactly what drugs they want and how the trials should be conducted. For instance, it would be unethical to conduct placebo-controlled drug trials. Early on, HIV patients established that precedent. The reasoning is this: Since there are no approved ME/CFS drugs for control patients to take during such a study, it would be unethical to give them a placebo.
Latin declensions and phony definitions
One thing I found stupefying as I watched the Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting of last week was that the CDC’s Dr. Elizabeth Unger justified using different definitions of the disease, as if they were, say, Latin declensions. One of those definitions, the Canadian Consensus definition, is the real ME/CFS. That’s the CFS that causes immune abnormalities, seizures, autonomic dysfunction, excruciating pain, short-term memory loss, dramatic drops in I.Q., swollen lymph nodes, lesions on the brain, cancers and death.
And there’s the phony CFS that the CDC studies, which meets the Empirical definition (which the CDC sometimes calls the revised Fukuda definition). That’s the CFS that causes depression, minor aches and pains, and weight gain. In fact, many patients whom the CDC recruits for its studies don’t even know they’re ill, so mild are their symptoms. Why is the CDC studying patients who aren’t very sick when many ME/CFS patients are dying? It’s as if CDC scientists aren’t familiar with the concept of triage. At this point, who else but ME/CFS patients can teach them?
Homographs
Perhaps they could explain how the Canadian Consensus CFS and the Empirical CFS are homographs: Words that sound the same but have different meanings like bow (shoots arrows) and bow (tied with a ribbon). That’s all they have in common. No researcher on the CFSAC committee voices umbrage at the muddling of these disparate groups—this lunacy that passes for science—for fear of alienating the government agencies that feed them. It’s not their fault. They’ve got to earn a living. Which is why CFSAC needs scientists with very sick spouses or very sick children because they’ll have different priorities. Which is also why CFSAC needs patient advocates: They’ve got nothing left to lose and they have the sense of urgency that’s sorely lacking now.
Congressman Barney Frank, who is gay, believes that the reason many people hate homosexuals is because their leaders tell them to. I believe the reason most people think that ME/CFS is a benign mental disorder is because scientists and the government have been telling them that for a quarter century. There’s a great moment in
Outrage when activist Michael Rogers pronounces that all activism is driven by rage. “People are suffering and dying because some self-promoting asshole is telling a lie,” he says. Doesn't that sum up what’s been happening with ME/CFS in the United States since the Incline Village, Nevada, outbreak of 1984? It’s time that patients once and for all get angry enough—and stay angry enough—to put an end to it.
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