Wednesday, August 15, 2012

The Secret Files


Slogging through the sealed U.K. ME files that have finally been released isn't exactly like combing through Girl with the Dragon Tattoo material. But a few of the many entries--most of which concern disability eligibility--may prove illuminating, despite the fact that the patronizing author of what may be the most problematic entry is unknown: The beginning of the letter and signature are missing. The mystery writer intones, "It is important to avoid anything that suggests that disability is permanent, progressive or unchanging. Benefits can often make patients worse." 

Next, psychiatrist Simon Wessely penned an enlightening letter, writing to the Department of Social Security on June 10 of 1993 that ME is a psychiatric disease but that its "powerful lobby group" has earned ME a coveted slip in the neurological harbor.  Explains Wessely:

"I  regret to say that it seems to me that in order to be fair to the ME Association you have now gone to the other extreme. I am disturbed that this disorder should be listed as a neurological disease. I enclosed an editorial that I had written last year for a neurological journal reviewing the evidence on this subject, and concluding that there was little to point to a neurological origin of symptoms. Since then more research has been published in the leading neurological journals, and nothing has happened to alter those conclusion [sic].

"Instead I feel this decision represents the triumph of an effective lobby over scientific evidence. If CFS/ME is to be listed as a neurological disorder, I for one will begin to campaign via the mental health charities for schizophrenia and manic depression to be also listed under the same heading. Indeed, there is far more evidence suggesting that these disorders have a neurological origin than does CFS/ME.

"I also feel that this decision, if it has been made, reflects an undesirable stigmatisation of psychiatric disorders. The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry." 

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.