Folks who suffer from Multiple Sclerosis are not really a rowdy bunch. Activism and outrage are hard to muster for the chronically fatigued. But since Thanksgiving, people with MS and their loved ones have gone all ACT-UP 2.0.
That is, the past few weeks have seen a surge in online activity within the MS community - as bloggers, vloggers and forum posters are calling one another to action in response to the lack of response to what many perceive to the scientific breakthrough they've been waiting for.
If you haven't heard about the report in December's Journal of Vascular Sciences by Italian vascular surgeon Dr. Paolo Zamboni, then you probably live in America.
I don't suffer from premature ejaculation but I do know, (thanks to the New York Times), that there's a new drug for it available in nine countries, but that it hasn't yet been approved for sale in the United States.
But when I went looking for news about Dr. Zamboni's research, I could not find it the mainstream press. I did find it all over the Canadian Press and European Press.
Let me start by saying I am not a doctor nor do I play one on TV.
On November 21, CTV W5 (Canada's top television network), aired an in-depth story about "a stunning new discovery of a revolutionary new treatment for a debilitating disease." They interviewed Dr. Paolo Zamboni, from the University of Ferrara in northern Italy. His research suggests that MS is not, as widely believed, primarily an autoimmune condition, but a vascular disease (CCSVI, short for chronic cerebrospinal venous insufficiency.) Dr. Zamboni found that, in over 90 percent of people with Multiple Sclerosis, the veins draining blood from the brain were constricted and this led to a buildup of iron in the brain that, he theorized, causes the neurological symptoms of MS.
MS would therefore be caused by a drainage problem, a plumbing clog that Zamboni posits can be rectified with a simple but experimental surgical technique similar to an angioplasty. Zamboni (and up until last week, a doctor at Stanford) have since done the procedure on over 100 patients and Zamboni reports vast improvement in patients' symptoms nearly immediately. Zamboni's wife, Elena Zamboni was one of his first success stories - her MS being his driving force.
Since then, a battle between patients and practitioners has hit the net. Fervor has collided against skepticism and medical cynicism - and media disregard has stirred up resentment and even conspiracy theories.
Patients' blood (whether it is or is not circulating adequately in the veins) has been boiling.
It began after the Canadian television aired their interview with Dr. Zamboni. The broadcast went swine viral. Avis Favaro, the reporter who broke the story, said that she has been "shocked at the tremendous response to this story. It is beyond that for any other medical story we have worked on." The segment has been linked to countless times worldwide and translated into other languages."
The web was ablaze. People with MS finally heard the word "breaththrough" and heard the long long-awaited announcement of what was a potentially paradigm shifting game changer. These were not just mice getting better.
"My legs don't work, but I'm jumping up and down," said one hopeful MS patient on YouTube.
So when the videos and links arrived in the inboxes of MS patients in the U.S. they looked to the reputable news media for more information.
But still the mainstream press wasn't reporting the story. On ThisIsMS.com, an MS info-exchange, postings about CCSVI topped 16,000, (other treatment news numbers in the tens or hundreds.) In online forums, discussions turned to "where is the coverage on this?" "No one will listen" is the title of one long thread. A Facebook group called "MS Uprising" was born, a YouTube channel was born.
The MS society of Canada crafted a statement of cautious optimism. They adapted a "wait and see stance, urging patients to "temper their euphoria."
Web activists were not satisfied and began to draft petitions and suggest diverting donations to directly support hospitals like University of Buffalo where Zamboni's approach is being further studied.
Of the MS society's statement, Dr. Lorne Brandes, an oncologist who blogs for CTV News' Health Blog, wrote, "If their official response to Dr. Zamboni's research was any cooler, icicles would form on their spokespersons' lips. Why am I not surprised? These organizations are big money operations, run by risk-adverse professionals and fundraisers who are absolutely petrified of making a mistake and prematurely backing a losing horse. Their interests are also heavily intertwined with those of Big Pharma."
This sentiment is echoed again and again. Online articles scream out with Woodward and Bernstein-wannabee headlines like "Simple Surgical Cure for Multiple Sclerosis Opposed by Big Pharma" and "Multiple Sclerosis cure found, MS societies in panic" - (but the article's content is just a reprint of The Globe and Mail's less provocatively titled "Researcher's labour of love leads to MS breakthrough."
But when bloggers and vloggers and posters invoke "Big Pharma," they start sounding like they think they're Ralph Fiennes in "The Constant Gardener" - blowing the whistle on the industry's evils.
Still, when newly radicalized sick people notice that the media isn't reporting on this big story and notice that neurologists and advocacy organizations are minimizing or denigrating the importance of Zamboni's findings, their conspiracy theories start to sound sort of plausible.
That is, just because they're paranoid doesn't mean that Big Pharma isn't out to get them. The pharmaceutical industry stands to lose a lot if Zamboni's one-time treatment pans out. The most common drug therapies for MS cost about $30,000 a year. And there are well over 100 medications for various MS symptoms.
On one MS forum is a link to another pharma-gate headline: "Big Pharma's Crime Spree", in which the reporter for Bloomberg Markets Magazine assesses that "finding cures is not even remotely a consideration by pharmaceutical executives."
While this idea is not a new one, when you pair it with the recent directives from the MS Society (well-funded by the drug industry) patient distrust doesn't seem unwarranted.
The Canadian MS Society urged patients "not to abandon the treatment they are on." The US went further, discouraging patients from getting tested at all. Prescribing ignorance is bad advice. At best it's condescending.
Much of the medical establishment's approach seems to be likewise paternalistic. Some patients have concluded that naysaying neurologists are territorial - MS is their disease. And if Zamboni is right, MS researchers have been barking up the wrong tree for decades.
Bloggers gripe that the US scientific establishment is mired in red tape and is overly-concerned about malpractice. So some have already undergone experimental surgery. With degenerative disease breathing down their necks, some patients are ready to pursue even a glimpse of a cure, damning the torpedoes. Which alarms many of their doctors. Who rain on their parade. Which causes more suspicion and activism.
Dr. Elizabeth Crabtree, a neurologist at UCSF's MS Center, has plans to begin an ongoing podcast to better inform MS patients of new developments. So they don't have to learn it on the streets, as it were. "No wonder there's so much distrust," she said. "The treatment options are inadequate." She expressed frustration that medical facilities compete instead of collaborate. Patients, doctors and support groups should be working in alliance, she said.
Whether egos and money do get in the way of out-of-the-box thinking, one cautionary tale does loom. A patient at Stanford died following CCSVI surgery recently and another patient underwent open heart surgery after a stent migrated to his heart. The Stanford program was swiftly halted.
Dr. Michael Dake's "under the radar" stent implants (Zamboni uses a "balloon" procedure ) were conducted before a clinical trial. But instead of being deemed unethical, Dr. Dake was called a hero and a "pioneer" in online groups.
"This I would do," said Dayle Baich of the Zamboni procedure. Baich, who now uses a walker because of her MS, told The Ottawa Citizen, "it's a very simple surgery, compared to two years of chemotherapy. In three years, I have gone from being normal to now. So where am I going to be in two or three more years? I don't have the time. Neither do most of the people here."
As a direct result of patient activism, the MS Society has announced plans to fund CCSVI research and clinical trials will commence at several medical centers in 2010. CBS and other esteemed news outlets have caught wind of the whirlwind. Their coverage is due out soon.
Such is the story of keyboard activism - among the "handicapable" (a term the TV show "Glee" recently coined.)
In case Ralph Fiennes is looking for his next project.
Follow Erika Milvy on Twitter: www.twitter.com/ErikaMilvy