Monday, August 26, 2013

What’s the Matter with Meghan?

It appears that Meghan O’Rourke may have ME, but The New Yorker writer doesn’t know it. 


In the current edition of The New Yorker, writer and poet Meghan O’Rourke pens in the readable piece "What's Wrong with Me?" that she's been sick for years with an autoimmune disorder that no one can identify, but the illness has the classic symptoms of ME.

Her early blood work showed recent exposure to Epstein Barr, cytomegalovirus and parvovirus. Her lymph nodes "ache," she’s developed Hashimoto’s thyroiditis, she forgets words, transposes words and can’t think. She’s been plagued with neuropathy, migraines, terrible fatigue, hives, low blood pressure, dizziness, bruises, fevers. These are textbook ME complaints. But it's not just the litany of symptoms that is so familiar. It's the way she describes them, from her brain being "enveloped in a thick gray fog" to this description of an evening out: “Sitting upright at my father’s birthday dinner required a huge act of will."

O’Rourke also has a family history of several autoimmune illnesses, including rheumatoid arthritis, ulcerative colitis and thyroid disease. She has two cousins who, like her, are “inexplicably debilitated.”  

Her illness has doctors baffled. One theorizes that, in addition to her Hashimoto's, she has an autoimmune disease attacking her hypothalamus. And while she's improved on a gluten-free, specific carbohydrate diet, her symptoms persist.

As O'Rourke has vacationed in New England, where she enjoyed walking under the “tall New England sugar maples," she should also consider the new culture test for Lyme disease as well. Some cases of Lyme masquerade as ME.

My advice to O'Rourke would be to first read reporter Hillary Johnson's seminal work on ME, Osler's Web. My bet is O'Rourke will see herself reflected in the stories of these patients.

If you believe that O'Rourke may have ME, why not let her and The New Yorker editors know with a letter to the editor? The issue is available for free with an android device, and for 99 cents with most Kindles (except the Kindle Fire, which will cost you $5.99 for the issue).


Sunday, July 7, 2013

Interview with Ryan Prior
and Nicole Castillo
of The Blue Ribbon

Journalist Ryan Prior and filmmaker Nicole Castillo didn’t have an aha moment that prompted them to make the documentary, The Blue Ribbon, about ME. Their interest, which marinated over a period of months, began when Prior, who’s had ME since October 2006, wrote his first piece on the subject for the USA Today College blog in October 2012, “two weeks after Ian Lipkin’s nail-in-the-coffin study on XMRV,” he recalls. The response to Prior’s piece was overwhelming: The average USA Today college story generates 30 Facebook likes; this one got 500. 

“I had touched such an untapped reservoir of pain,” Prior, 23, says evenly. Some of the patients who weighed in, he says, had contemplated suicide, and Prior realized that more needed to be done about ME. Advocates started contacting Prior, and he began his immersion into the disease.

Social Justice
For her part, 23-year-old Nicole Castillo, who doesn’t have ME, has worked on feature films and in television. Currently, she serves as a TV computer graphics technician and floor director. But her passion is social justice. After volunteering at a men's homeless shelter, a daycare center, a nursing home and even spending her spring break senior year living at a convent, she knew she wanted to make medical and social-justice documentaries and was itching to start. She just needed the right subject. And she found her inspiration closer than she could have imagined, in Prior, who is also her boyfriend.

“Seeing Ryan’s hardships with ME/CFS was heartbreaking,” Castillo says. “It made me feel so helpless myself. With little understanding of the bouts of brain fog, exhaustion and inability to speak, it was devastating to not be able to help him.” At the time, Prior and Castillo were students at the University of Georgia, and Prior was having trouble keeping up because of ME. In fact, he was about to drop a class he needed to graduate to complete a dual degree. “Because he has such a supportive family, adaptations in his schedule and lifestyle and a lucky bout of timing, he prevailed,” Castillo says. Prior graduated with his dual majorswith honors.  “Unfortunately," says Castillo, "this is not the norm for so many patients.

“After experiencing a loved one go through all of that, I refuse to stand still when I have an opportunity to be a voice for the ME/CFS community,” she says. “I will do my very best to make a documentary to do justice to those in despair, and demonstrate a pain that is far too unknown to the mainstream. I want to make a documentary for the public, politicians, journalists, researchers and doctors to display the grand need for support.” 

Castillo is overseeing production, audio, camera and editing of the film. “I want to capture the spirit of what Ryan is trying to get across,” she says. 

West Coast/East Coast Filming
Prior admits that he’s had a lot to learn about ME—and his education from the patient community has been swift.  Even though he’s lived with the disease for nearly seven years, he, like many patients, used to accept the Centers for Disease Control’s (CDC) definition. At only 23, he hadn't been aware of the long, sordid history of the disease until he began writing about it.  "But I did realize a much more national discussion needed to take place," Prior says. "The goal of the film is to bring more awareness to this disease.” 

Prior and Castillo want their 90-minute film to resonate with the entire patient community—and at the same time to resonate with the public at large.  The two will spend 10 days conducting interviews on the West Coast, and then move on to the East Coast.  Among others, they hope to interview Dr. Andy Kogelnik at the Open Medicine Institute, Gunnar Gottschalk and Dr. Daniel Peterson at Simmaron Research, Staci Stevens and Dr. Chris Snell at the University of the Pacific, Dr. Judy Mikovits, Dr. Nancy Klimas, Dr. Ian Lipkin and perhaps government officials. “There are no plans to interview the Whittemores yet,” he says.

They also plan to meet with a few patients in the 25 percent—the sickest, bedbound patients.  Both Prior and Castillo are concerned, however, that the interviews and the technology they’re bringing in their homes will be problematic for the patients, and they want to minimize their distress.

Medical Fellowships
In addition to making the film, Prior and Castillo hope to raise $50,000 for 10 medical students to do eight-week fellowships with ME experts. “We hope they will help train the next Daniel Peterson or David Bell,” Prior says.

Following Dr. Jacob Teitelbaum’s ME protocol, Prior is highly functional now.  That wasn’t the case when Prior, a serious soccer player and runner, first got sick and had to drop out of high school. Now, Prior can even exercise—every other day.  When he tries to exercise daily, however, he crashes. 

Raising Money
If Prior and Castillo raise enough money, the duo may continue filming in the U.K. and/or Hawaii, where the film Unbroken, based on ME patient Laura Hillenbrand’s book of the same name, is being directed by Angelina Jolie.

Where they go is up to the public—and funding. After the Kickstarter fundraiser for the film ends July 10, Prior and Castillo will ask patients to vote on where they should go next. “Aristotle said democracy was mob rule, but we feel that the patients have bigger and better ideas than anything Nicole or I can come up with,” Prior says.

If you’d like to contribute to The Blue Ribbon, go to Kickstarter by July 10, or donate to the film’s PayPal account after the 10th. 

Thursday, June 6, 2013

Ampligen Up for Approval--
in Argentina


Hemispherx, the company that makes the experimental ME drug Ampligen, applied for approval in Argentina in July of 2012.  ANMAT (Administracion Nacional de Medicamentos, Alimentos y Tecnologia Medica), Argentina’s version of the FDA, generally renders decisions in one year. The company already received approval for a form of interferon called Alferon in Latin American countries (it's approved in the U.S. for genital warts). And ANMAT broadened Alferon's approval this year to include other diseases, including hepatitis C.

Hemispherx's stock price, which had plummeted from $1.10 to 18 cents a share following FDA's refusal to approve the drug for ME at the close of 2012, recently has been edging up, hitting a high of 29 cents today.

Sunday, April 28, 2013

WELL, AT LEAST THE FOOD WAS GOOD



My Thursday-night dinner at the FDA meeting—grilled salmon and broccolini—was terrific for hotel food.  Earlier, the cocktail hour of mostly vegetarian appetizers, arranged by advocate Denise Lopez-Majano, whose two sons are sick with ME, was equally good.  

That being said, why any of us bothers to attend these government dog-and-pony shows is anyone’s guess.  I suppose hope springs eternal and all that.  This meeting, at FDA, seemed to hold more promise, at least, than the Chronic Fatigue Syndrome Advisory Committee meetings at CDC.  Then again, the bar couldn’t get much lower.  While patients had only two minutes to talk, FDA officials waxed lyrical about the lovely baby grand piano in the hallway, should any patient care to play.

Dr. Daniel Peterson’s talk was more interesting than the FDA meeting.  Dissed by the FDA and not given a place on any of the panels, Peterson talked in his meeting across the hall about his success with Vistide when used on patients with active infections by PCR with HHV-6, Epstein Barr or CMV—meaning the virus is actively replicating—as opposed to just the high antibody numbers to these herpes viruses that many with ME sport.  Probenecid, Peterson explained, potentiates Vistide’s effects.  He found that VO2 max—one’s aerobic threshold—improves on Vistide/Probenecid, and natural killer cells increase.  Peterson asked: Why should getting rid of the virus result in VO2 max shooting up?  His theory: The virus is messing with mitochondria.  One of Peterson’s patients on Vistide checked out of a nursing home and went back to work.  Of the 27 patients on Vistide, 18 didn’t relapse off the drug. 

More later.