Tuesday, September 4, 2012

Team Science

Recently Dr. Dennis Mangan, retired NIH chair of the ME/CFS Research Working Group, penned a problematic piece with the convoluted title “Writing an NIH grant application—Team science: Playing in the same sandbox.”

Mangan delivered the news that ME deserves research. The anticipated “but” arrived in no time with the word “regrettably” as in “Regrettably, Congress is now talking about a decreased budget for non-defense related ‘discretionary’ expenses… such as NIH-supported medical research. The success rate for applications is likely to decrease. Opportunities for additional research on ME/CFS will be lost.”

Pass the potatoes. I should add that I once worked for a boss who couldn’t give me a raise but had a wastebasket worth $14,000.

Mangan went on to discuss how researchers working on a team science project should “know their collaborators,” get input in the early planning stages, decide who should be a “team leader,” and get “everyone fully committed to the project.” Who the hell is this piece for?  Children? You know, when my niece was about 5 years old, she saw a photo of the Backstreet Boys on the cover of my Entertainment Weekly. Pointing to their white T-shirts, she said shrewdly:  “Those boys are on the same team.”  

With what passes for wit in the government, Mangan drove home his point by including a lame T-shirt in his piece:

In a follow-up letter came Mangan's inevitable catch-22:  Until we have a "breakthrough" about ME, the government won't throw any meaningful money at it.

In my view, the only redeeming things about the Mangan missive were the brilliant, piercing letters by ME patient Matthew Lazell-Fairman and CFIDS Association board member Jennifer Spotila. In particular, Lazell-Fairman discussed the concept of “will”—or the lack of it, when it comes to the government’s longtime lip service to ME. 

In her letter, the CFIDS Association’s Kim McCleary hurled a bunch of statistics, always guaranteed to bore readers to death. I have no recollection of any of it, as I had to hold my head to keep it from exploding. Please stop doing this, Kim. See the forest through the trees.

A man I used to sleep next to had the bizarro habit of squirming uncontrollably before falling asleep, making it impossible for me to fall asleep. So we devised a code word for keeping still: “tomato.” And he’d remain blessedly still until I slipped into unconsciousness. I have no idea how we arrived at “tomato,” except that we both loved Jersey tomatoes (with coarse sea salt), so it conjured pleasant thoughts.

Maybe ME patients need a code word for “cut the crap,” when it comes to government mumbo jumbo. What should it be?

Thursday, August 23, 2012

The Blood Became Sick

A disease discovered about eight years ago is spreading in Asia and parts of the United States. Its victims, most of whom are Asian, are HIV-negative. Their immune systems are paralyzed due to the body churning out autoantibodies that inhibit gamma interferon, which fights infections. For more:  click here.

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!