Saturday, August 4, 2012

Empirical Nonsense and the Death of CDC’s Bill Reeves



The Centers for Disease Control’s Dr. William “I just know CFS is psychological!” Reeves has died at the age of 69 from a heart attack—astonishing, considering he had no heart.  In 2007, the National Institute of Health’s Dr. Stephen “I know CFS is due to childhood stress!” Straus, died at the age of 60 of a brain tumor—astounding, as Straus had no brain.

Vagina Dentata
I do not have words to describe the incalculable suffering Reeves, Straus and the rest of the CFS marionettes at CDC and parts of the NIH have caused, with manipulator Dr. Tony Fauci (who serves as director of the National Institute of Allergy and Infectious Disease) pulling the strings—though depraved comes to mind.  Had there been justice in the world, those in government like Reeves who’ve turned ME into a joke would have died excruciating and humiliating deaths from vagina dentata years ago. 

Besides Reeves's lies and obfuscation about the gravity of ME and his through-the-looking-glass gobbledygookReeves’s say-what Empirical CFS definition comes to mindwas the litany of phony, “maladaptive personality features” studies and cold-call phone consults to middle-aged women in Atlanta and Wichita who had no clue that they were ill with ME because they weren't. They were just tired and depressed.  They didn't have immune abnormalities, virus reactivation, orthostatic hypotension, seizures, short-term memory loss, significant loss of IQ, profound weakness (particularly after exertion), rare cancers and heart disease.  

Tony Fauci's Mission
But Reeves's "confusing" ME with fatigue/depression has been, under Fauci's directive, a CDC goal for the past 30 years, and the dedicated government agency has met it with flying colors. This is not a group of bumbling idiotsfar from it. Tony Fauci's mission has been to ignore, confuse and neglect a growing epidemic of one million seriously ill people in the United States and millions more abroad until no one believes them, cares for them or spends money on them, including government, schools, employers, insurance companies and, in many cases, ME patients' own families. Hasn't Fauci succeeded?

Still, the ME community is afraid to voice much dissent, believing that things will get worse. How much worse can things get? Seriously. After nearly 30 years, there are no treatments, there is no research, and no one gives a damn about this illness. 

Tick Tock
Had Reeves died 20 years ago, no doubt many ME patients would have hoped that Reeves’s replacement would have brought real change. But as we have seen, the government just replaces one dead drone with a barely living one, while many with ME die or wait to live, trapped in dismal, horizontal lives in darkened rooms, tick tock, tick tock.  

Sadly, there is no justice, and time marches on.




  
Teeth trailer.  I imagine she has ME as well
as vagina dentata.






          Alan Price singing "Justice" in the film O Lucky Man!

Thursday, May 17, 2012

PLAY IT AGAIN,
AND AGAIN AND AGAIN

  A New ME Outbreak?

A group of mostly female students aged 12 to 19 in San Antonio, Texas, have come down with a constellation of symptoms physicians are terming unusual. Those symptoms include chronic fatigue, headaches, nausea, vertigo, stomach problems and seizure-like activity. In a recent news segment by San Antonio reporter Sarah Lucero, a mother of one of the girls said that one doctor accused her daughter of faking it—because the symptoms are so uncommon—and urged psychiatric care.

In the segment, other diseases that afflict teenagers are mentioned, including “chronic fatigue syndrome, postural tachycardia syndrome or POTS.”

When will doctors get it that POTS often goes hand-in-hand with chronic fatigue syndrome and that these Texas students probably have CFS?  Perhaps when the name CFS is changed to Myalgic Encephalomyelitis (ME) or something else that explains how serious this disease really is.

One bright light: The San Antonio illness is being termed “neuroimmune syndrome.”

Has CDC gone to San Antonio to investigate?  My bet is no.

Sadly, the mother of the teenage girl in the piece is taking her daughter to the Mayo Clinic for help. Perhaps more than any other hospital in the United States, the Mayo Clinic is known for its dismissal and psychologizing of ME.  The most egregious example that I know of:  Back in the 1980s, Nancy Kaiser, who suffered from a severe case of ME—before she had a name for it—traveled to more than 200 physicians for help until she found ME-literate physician Daniel Peterson. One of her stops along the way was Mayo.

During the visit, Nancy had a seizure—she had multiple seizures every day before going on the experimental drug Ampligen—and fell off her chair. The Mayo physician kicked her and told her that she was faking it.  Nancy, of course, had no memory of the event, but her husband, Jim, who accompanied her, certainly did.  Nancy died of ME in 2008.

To view the San Antonio news segment, click here.
 -------------------------
My thanks to Zac for emailing the clip about the San Antonio students.

Wednesday, February 1, 2012

LeRoy and Lyndonville

Twelve teenage girls attending the same school in LeRoy, New York, suddenly developed tics and vocalizations—in other words, Tourette’s Syndrome.  Neurologists at the nearby Dent Neurologic Institute who've “treated” several of the girls are writing them off as suffering from hysteria (couched in the sanitized “conversion disorder” to make the diagnosis palatable) and insisting that the Tourette's is totally real yet completely psychogenic.  
Here we go again. 

LeRoy is a stone’s throw away from Lyndonville, the site of a big ME outbreak in 1985 that affected mostly children, which the Centers for Disease Control and many local physicians (Dr. David Bell being the notable exception) dismissed as mass hysteria.

Four years of medical school, a three- to four-year residency, usually followed by a fellowship, and conversion disorder is the best the Dent neurologists can muster? Apparently. Next, they'll be calling British psychiatrist Simon Wessely to ponder how the girls' negative “illness beliefs” are causing their physical symptoms.  

Instead, why not consider a possible toxic exposure—especially since a train derailment a few miles from the school back in 1970 spilled cyanide and trichloroethylene (TCE), a known neurotoxin. The site was never cleaned up, and the chemicals seeped into the water supply. Even the Environmental Protection Agency admits it dropped the ball on the LeRoy spill.

But why did the girls get sick 40 years after the fact?  Perhaps because the year before the Tourette’s outbreak the school constructed new playing fields, including a field for girls’ softball. Could the construction have stirred up the toxins in the soil or was more contaminated soil imported to build the fields?

Unlike the events of 25 years ago in Lyndonville, there’s empowerment with the Internet. One of the affected girls, spirited 17-year-old Lori Brownell, an avid softball player until she became ill, is chronicling her ordeal with humor on YouTube under the moniker rodeocowgirl131. In addition to the Tourette’s symptoms, Lori, like some of the other girls, is also passing out and experiencing seizures.

Thankfully, the parents aren’t taking the conversion disorder diagnosis seriously either. They’ve sought out other neurologists to treat the girls, and they’ve hired consumer advocate Erin Brockovich (immortalized in the eponymous film that starred Julia Roberts) to investigate, kick ass and take names.


Wednesday, November 30, 2011

The Specificity of the Crazy and A Cattle Prod to the Genitals


Have You Been Served?

Two years ago, when Science published the first study linking the retrovirus XMRV to ME, how many of us yearned to fast forward a few years to see if Dr. Judy Mikovits’s findings would be validated and the cause of ME finally nailed, as we hankered to do 20 years earlier when Dr. Elaine DeFreitas published her landmark study linking ME to another retrovirus?

This heady time around no one could envision the spate of nightmarish events that have been plastered in the media since October 2009: shouting contests on both sides of the Atlantic about the rightness of this study or that study and intimidating researchers in Europe and the U.S. for daring to research the retrovirus XMRV, until they switched sides, washed their hands of ME or were booted out of research altogether.

Blood Working Group
More recently was the failure to distinguish patients from controls in the Blood Working Group's XMRV study, and the relabeling of slides, which caused an uproar. That was followed by a spate of jaw-dropping disclosures, for which I've coined the phrase "the specificity of the crazy"—though that phrase applies to much of ME research during the past 30 years. As many readers know, according to court affidavits by Mikovits's research assistant Max Pfost, Mikovits asked him to take documents from the Whittemore Peterson Institute (WPI), which he stashed in a Happy Birthday bag.  His affidavits also state that Mikovits hid out on a boat to avoid being served with papers from WPI and that the duo created secret email accounts—an oxymoron if there ever was one.

Then, during Thanksgiving week, in a quintessential Upstairs, Downstairs moment, WPI gave public thanks for getting back most of its property.

British researchers Simon Wessely and Myra McClure, who published a negative XMRV study, and the CDC, which did the same, must be licking their lips as they watch the critical XMRV players implode in the media. Under extreme stress, many people become reptilian, but still…. To paraphrase singer Annie Lennox, how long can the ME community go on living in this same sick joke?

Pulling strings
Scientists are supposed to ask: What do we think, what do we know, what can we prove?

I don’t know what to think about most of these events—let alone reflect on what we know and what we can prove. At this point, there are far more questions than answers. Here are some of mine: After working several years on XMRV, did anyone at the Whittemore Peterson Institute know that there were reliability issues with the XMRV assays before the Blood Working Group began its studies? After all, when you conduct scientific experiments, you check known positives at the same time to make sure everything is copasetic.

Another question: Who was pulling the strings? Did Mikovits see a problem early on—perhaps even before the Science study was published? If so, did she share her concerns with Harvey and Annette Whittemore or Daniel Peterson, or did she sweep her disquiet under the proverbial carpet? And if Mikovits voiced unease, what was the response? Did they insist she soldier on, and they’d all figure it out in the rinse cycle—or could that have been, perhaps, Mikovits’s expectation? At any time was there deception? Was there self-deception?

Do the right thing
Contending that the retrovirus is hard to culture from blood is reasonable, but how long can you then confidently rely on that assay? You have to develop an antibody test that works consistently or a better way to find the virus—or something. You have to take a step back and figure it out—because if you don’t, the problem will bite you in the ass—and not in a good way. And with this disease the bite always seems to be particularly vicious, the kind that leads to, say, a methicillin-resistant staph infection, several years in the wilderness, and slashing ME’s already dangerously low street cred.

What should the key players have done if they knew there was a problem? A psychiatrist friend of mine is fond of saying: “Unless someone is planting a cattle prod to your genitals, you walk away when someone is pushing you to do something you find objectionable.” You stand up, you refuse, you do the right thing.

Could that be why Dr. Daniel Peterson left the Whittemore Peterson Institute so abruptly—back when things were ostensibly going along swimmingly, only a few months after the Mikovits study was published? He wasn’t a bit player in this yarn: He’s the Peterson in the Whittemore Peterson Institute. None of the explanations for his abrupt departure have made a whole lot of sense, at least to me.

Intellectual property
Why did Mikovits want her notebooks and other data that research assistant Max Pfost allegedly took at her request? Did Mikovits believe the materials belonged to her? Indeed, Mikovits attorney Lois Hart told Science reporter Jon Cohen, “She [Mikovits] is entitled to a copy of the information she created.”

According to law, does that data legally belong to Mikovits or WPI or to both? In the U.S. and Europe, the institution usually owns the intellectual property, though every contract is different. (In Japan, it’s usually a 50/50 split between the institution and the inventor.) Is keeping a copy of the material different from owning the material?

Did Mikovits or WPI want the material to continue the current research, or to foster other important scientific discoveries and to help patients? Did Mikovits want the data to prevent WPI from continuing its research? Does the WPI want to prevent Mikovits from continuing her research? Where, exactly did the XMRV research go wrong—and is the key to it all in those notebooks? What role did money have in all of this? What role did fame play?

Who the hell knows.

Versions of the truth
In a November 11th post on the Wings of Hope blog, Annette Whittemore wrote: “WPI immediately asked to have the materials returned, but to no avail.” If the Whittemores made that request, how did Mikovits and her lawyers respond? What other options could the Whittemores and their lawyers have utilized short of humiliating Mikovits and leaving her to stew in jail for five days without the possibility of bail? Did the Whittemores need to resort to Draconian measures?

Or did the Whittemores have the fiduciary duty to report to the police that property was taken from its institution and once they did, was the chain of events that followed pretty much out of their hands? Did the Whittemores consider the negative repercussions of putting Mikovits in jail on scientists interested in studying this disease, in the press and on the patients?

I want to know the answers to these questions, instead of blindly pledging allegiance to anyone’s version of the truth. As I’ve commented on this blog in the past, and with apologies to Voltaire for messing with his quote, reason consists of seeing things as they are, not how we want things to be.

However you cut it, the last few months have been a terribly sad coda to such a promising start. I think of all the excitement, good will and hope that floated up the day the prestigious journal Science published Judy Mikovits’s study. Judy Mikovits, Daniel Peterson and the Whittemores seemed an invincible team. But most relationships end, and many end badly—though most not as badly as this. As Dr. Phil is fond of saying, “The person you marry isn’t the same person you divorce.”