Wednesday, December 26, 2012

Medical Sadism

For me, the most appalling thing about the FDA Ampligen committee meeting wasn't Ampligen's nonapproval.  It was a very sick ME patient leaning on a cane who showed me the prescription a sadistic, condescending neurologist had given herafter admonishing her for using a cane.  Gazing at the script for several seconds, I first felt confusion and then the patient's humiliation.  The prescription read:

Tai Chi  

I told this story to a friend who's had ME for more than 20 years, and he said in all seriousness:  At this point, I'd take that cane and bash the doctor's head with it.   

Saturday, December 22, 2012

The Oxford Definition
It's Baaack

I was at FDA this week to testify for approval of Ampligen for ME.  I was surprised when several people, including a representative of Hemispherxthe company that makes Ampligen felt assured that Dr. Beth Unger, head of CFS research at CDC, would vote for approval.

In my view, Beth Ungerwho should know the suffering that millions experience with ME better than most FDA committee memberswould vote for Ampligen approval when pigs fly.

Like most of the committee (9 to 4), Unger voted no, when it came to evidence of Ampligen's efficacy. She also voted with the majority (9 to 4) that the company did not supply adequacy of safety data. She voted with the majority (8 to 5) that the company did not provide sufficient efficacy and safety data to bring the drug to market.  However, she also voted with the majority of members (8 to 5) who said that the drug's safety profile overall was acceptable.

Vodka and Beets
Granted there were issues with the studiesbut there are issues with all studies, and side effects with all drugs, and on and on.  Of course you can make a strong argument for not approving a drug with problematic trials when there are other drugs on the market, but when there aren't any?  For a disease that afflicts 1 million Americans and 20 million worldwide?  When there are no drugs in the pipeline?  When the majority of the committee says it's safe?  Ampligen has a near 30-year history of helping patients, and there haven't been any fatalities from the drug.  How many FDA-approved drugs have that track record?

At FDA, Unger also said in her decision that more needs to be known about this "subset" of ME patients who responds to Ampligen.  If Unger, the late William Reeves and the rest of the sham scientists at CDC had bothered to investigate the disease seriously for the past 30 years, those "subsets" would have been defined by now and drugs would have been approved.  Now, CDC is finally running the study.  What are the odds CDC will discover anything useful?  Pleassssssssse.

Muddle, Muddle
Of course, when you muddle the definition of ME or CFS or whatever you want to call it for 30 years, when CDC lumps its CFS studies in with "idiopathic fatigue" and "unwellness," when CDC is looking for personality disorders in patients instead of viruses and retroviruses, when CDC cold calls depressed women in Georgia and Kansas and tells them they have CFS when they didn't know they had anything wrong with thembelieve me, if you have this disease, you know absolutely, the way you know if you like liver or chocolate or vodka or beets, that something is terribly wrong with youis it any wonder that the patient population gets muddled?  

Of course not, since that's the idea:  Muddle everything, so that there's no data to hang your hat on, so that ME remains a mystery forever and ever, so that you have job security until retirement.  Muddle, muddle, toil and trouble.

FDA:  More Studies
FDA also said it believes the data is interesting and the panel wants to see another Ampligen study.  From what I've learned, the company doesn't have money for another study now.  So how is that going to happen?

Alaine Perry
One other point, before I bring you the main pointI buried the leadof my post.

The FDA committee seems to think that the fantastic, and I mean fan-frigging-tastic presentations by patientsincluding several beyond-articulate patients who are also physiciansare outliers, in other words, in the committee's eyes, they're far sicker than the average patient.  

Thank God for Alaine Perry, a brave scientist on the Ampligen committee who has ME and voted for approval.  Perry, 52, senior adviser for Disability and Special Need Population, CMS Center for Strategic Planning, said that the average patient is very sick.  And when committee members were grousing about the problematic side effects of Ampligenthe flu-like symptoms, the headachesPerry also made clear, in her determined, resonant voice, that those are everyday symptoms of ME.  She explained that she works at FDA, but that's all she can do.  She went caroling one day—she said she loves to sing—but knew she couldn't sing in a choir every week.  She doesn't have the energy after work.  Perry broke down, and so did many people in the audience

Why does the committee think most ME patients aren't that sick?  Could it be the name CFS that CDC coined?  Could it be the useless research perpetuated by same?  Laurence Fishburne, where are you?  Where the hell is the CDC of the movie Contagion?  Not doing ME research, that's for sure.

Oxford Definition
But there's more. A couple of weeks ago I asked CDC's Unger via email why is CDC using the antiquated Oxford* definition in its partnership with HRSA (Health Resources and Services Administration), along with Fukuda** and Canadian Consensus Criteria*** in its continuing education courses? The Oxford definition requires only fatigue, unlike the other definitions of ME, which require immune, neurologic and autonomic symptoms.
I also asked Unger:
  • For most CFS-literate physicians and patients, using all three definitions is a problem. That’s because the Oxford definition requires only fatigue as a symptom. In contrast, Fukuda requires fatigue and four other symptoms.* According to most CFS-literate physicians, the Canadian Consensus Criteria (CCC) is the most accurate and thorough of these three definitions, and requires the following: fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations.**
Given the significant differences in definitions, does CDC believe using all three definitions is problematic?  Why or why not?
  • By focusing on fatigue, the Oxford definition neglects other important symptoms embraced by CCC, as well as other symptoms in the original Fukuda definition. Fatigue is characteristic of many illnesses, from cancer and heart disease to depression.  Thus, with the Oxford definition, CFS morphs into a vague disease—it’s only vague by the Oxford definition, not by CCC.  Using the Oxford definition makes it more difficult for doctors to distinguish pathological fatigue of CFS from ordinary fatigue and from illnesses that have fatigue as a symptom—and that’s most illnesses. For all these reasons, Oxford is, in the view of most patients and CFS-literate physicians, a woefully inadequate and inaccurate definition.  Does CDC understand the problems with the Oxford definition?
  • Does CDC want there to be confusion about the disease?  
  • If CDC doesn’t want there to be confusion, why does it use all three vastly different definitions in the HRSA CME courses?
  • Over and over again, CDC states in meetings and in its medical articles that CFS is a poorly understood disease. Other researchers and clinicians look to CDC for guidance. Does CDC understand that by using all three of these vastly different definitions, CDC is causing the disease to be poorly understood?
  • The CCC definition describes the illness that most patients and CFS-literate physicians understand to be CFS. Given that using multiple definitions results in confusion and heterogeneous populations, why not make this critical change and use only CCC? Please explain why CDC won’t do this.

CDC’s Response

Through its press office, CDC—I assume it was Unger, since I directed my questions to her—replied:
CDC has developed several CFS CME courses, including Diagnosis and Management of Chronic Fatigue Syndrome (see which was prepared in collaboration with other CFS subject matter experts, including non-CDC clinicians in private practice and academic settings. Among other things, this CDC CME course provides information about multiple CFS case definitions, such as those mentioned in your query. CDC uses the 1994 case definition, but recognizes there are additional case definitions that can be useful. CDC is committed to providing accurate, evidence-based CFS information that is relevant to various audiences, including CFS patients, clinicians who treat CFS patients, researchers, and others.
I believe this information addresses the questions you asked.  You may wish to contact HRSA directly about questions regarding CME courses produced by that agency.
Thank you for your interest in CDC’s CFS research program.

This article is copyright CFS Central 2012. All Rights Reserved. You may quote up to 150 words from this article as long as you indicate in the body of your post (as opposed to a footnote or an endnote) that the excerpt is by Mindy Kitei for CFS Central. You may not reprint more than 150 words from this article on blogs, forums, websites or any other online or print venue. Instead, refer readers to this blog to read the article. 

*Oxford definition
fatigue as the main symptom; definite onset and not lifelong; fatigue is severe, disabling and affects physical and mental function; fatigue should persist for 6 months or more and be present 50% of the time; other symptoms, especially myalgia, sleep and mood disturbance may be present.
**Fukuda definition:
Patients must have four of the following:

Self-reported impairment in short term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities; sore throat; tender cervical or axillary lymph nodes; muscle pain; multi-joint pain without swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; post-exertional malaise (PEM) lasting more than 24 hours.

Canadian Consensus Criteria:
Neurological/Cognitive Manifestations: Two or more of the following: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty within formation processing, categorizing and word retrieval, and perceptual and sensory disturbances—e.g., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload phenomena: cognitive, sensory—e.g., photophobia and hypersensitivity to noise—and/or emotional overload, which may lead to crash periods and/or anxiety.

One or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations:

Autonomic Manifestations: orthostatic intolerance neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.

Neuroendocrine Manifestations:  loss of thermostatic stability—subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change—anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals.

Saturday, October 27, 2012

CDC Toolkit:
Despite Its Inaccuracies, CDC Won't Remove It

Last spring, members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) ruled that they wanted the CDC Toolkit about "CFS" removed from the CDC website because it’s inaccurate and because it’s giving false information to millions of doctors about ME.  For instance, the Toolkit endorses Cognitive Behavioral Therapy and Graduated Exercise Therapy (GET), which have been shown not only to be unhelpful with people with bona fide CFS but GET can actually be harmful.  That's because the hallmark of ME is post-exertional crashing.  The more you do, the worse that crashing generally is, and sometimes patients don't recover from those crashes.

Furthermore, the Toolkit states that there are no labs and diagnostic tests other than routine labwork to rule out other diseases that mimic ME, when in fact this is untrue. Many tests show abnormalities with ME patients.  For example, bona fide ME patients usually exhibit low natural killer function and abnormal tilt-table testing for autonomic dysfunction, and several published studies attest to these abnormalities.

At the CFSAC meeting this month, head of CFS research Dr. Beth Unger was asked by CFSAC member Steven Krafchick if the Toolkit was going to be taken down.  And Dr. Unger replied, “No.”

I emailed CDC a list of questions about the Toolkit, and below was the response.  Most problematic, CDC stated in its reply:  "The information in the Toolkit is not inaccurate, and we have verified this repeatedly in discussions with clinicians who care for CFS patients."

Given that the Chronic Fatigue Syndrome Advisory Committee has made a strong recommendation to remove the Toolkit, and given that the Toolkit is inaccurate, why hasn’t it been removed? 

"CDC continually reviews and assesses the best way to present information. CDC has determined that the agency’s website is an appropriate channel for providing the CFS Toolkit information to patients, clinicians, other stakeholders, and the public. This information is also available in hard copy in the form of booklets. The information in the Toolkit is not inaccurate, and we have verified this repeatedly in discussions with clinicians who care for CFS patients.  We have plans to revise the presentation and clarify issues that have been identified by CFSAC member Eileen Holderman and Dr. Lily Chu. There still remains a need for basic introductory information about this illness for primary care physicians, including those serving Spanish-speaking populations. The Toolkit, in both its English and Spanish versions, serves this need."

Who at CDC is responsible for making the decision to keep the Toolkit?
"For most CDC websites, content decisions are reached through a collective understanding among various CDC professionals with expertise in scientific subject matter and the presentation of complex public health information. CDC also consults with clinicians and other interested individuals about the ongoing need for information about CFS and has been advised that the Toolkit helps meet this need. CDC will continue to work with others to review the Toolkit and update and expand this information as appropriate."

Why isn’t CDC listening to the Chronic Fatigue Syndrome Advisory Committee?
"CDC does listen to the Chronic Fatigue Syndrome Advisory Committee places great value in recommendations made by the Chronic Fatigue Syndrome Advisory Committee. We consider all recommendations made by this committee. For example, the recent revision of the CFS website  was initiated in response to CFSAC recommendations.  CDC solicited specific comments from CFSAC members on the CFS web page and used these comments to make improvements to the site.  We are taking the same approach with the Toolkit." 

Tuesday, September 25, 2012

What Have Your Experiences Been on Ampligen?

The Food and Drug Administration (FDA) will once again decide this winter whether the experimental drug Ampligen, which has helped many ME patients recover or improve, should be approved.  Should the drug be approved, it will be an ME game-changer. 

Oddly, little has been discussed on the boards about Ampligen this time around—perhaps because the drug’s been up for approval several times before—and that’s too bad, because an approved drug would help legitimize the disease, provide much-needed treatment for patients, and signal to other drug companies that the disease is worthy of effective medicationsand not psychobabble.

Eighteen years ago, I wrote a piece on Ampligen for Philadelphia magazine called The AIDS Drug No One Can Have. Back then the drug proved remarkably helpful for both ME and HIV/AIDS.  Many patients went from bedridden to returning to work and school and a few with ME whom I interviewed who’d been ill for only a few years completely recovered. 

Then the FDA pushed for a change to make the intravenous drug easier to administer; it’s not clear if the new formulation is as effective, but many patients have continued to report improvement.

The FDA has tentatively scheduled the review process to begin December 20 and to continue to February 2. 

In the meantime, the FDA wants to hear from patients by November 1 about their experiences with ME, including how drugs like Ampligen have helped in treating the disease. The FDA is also interested in learning about the emblematic endpoints that should be used in reviewing ME drugs for approval. Fatigue, for instance, is a a subjective and often inaccurate marker with ME. Improvement in post-exertional malaise would be a far more significant marker. 

Patients can submit comments about Ampligen to the FDA directly here or send in comments and I'll post them on CFS Central and forward them to the FDA. Pressure needs to be placed on the government so that these agencies will be forced—kicking and screaming—to do the right thing by patients.

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!

Thursday, May 17, 2012


  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.