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.
Multiple sclerosis - Wikipedia, the free encyclopedia
MS: Summary for MORGAN STANLEY- Yahoo! Finance
Jury deliberates on Somerset man with multiple sclerosis accused of growing ...
http://www.squidoo.com/autoimmune_and_food
Most people who trust the AMA to take care of them aren't interested in taking responsibility for their own well-being; that's sad, if you ask me.
http://www.plosgenetics.org/article/info%3Adoi%2F10.1371%2Fjournal.pgen.1000369
Similarly a very interesting study done by Lappe found that 1000 IU of vitamin d plus 1100 of calcium may reduce cancer rate . "Vitamin D and calcium supplementation reduces cancer risk: results of a randomized trial." heres the link http://www.ncbi.nlm.nih.gov/pubmed/17556697
Interestingly in Canada health officials have changed the recommendation on vitamin in part because of the Lappe study The new recommendation ........ “We’re recommending 1,000 IUs daily because the current evidence suggests this amount will help reduce cancer risk with the least potential for harm,” says Logan. “More research is needed to clearly define the amount of Vitamin D that will maximize health benefits.” .......... here http://www.cancer.ca/Canada-wide/About%20us/Media%20centre/CW-Media%20releases/CW-2007/Canadian%20Cancer%20Society%20Announces%20Vitamin%20D%20Recommendation.aspxs
The ACS has taken a different approach.
Same for Big Media. Media corporations are selling a product, they're not in the business of reporting the truth, they're in the business of selling advertising space. What you see on the news or "opinion program" or TV show is created to sell advertising. If it doesn't sell ad space, or a producer doesn't think it will sell ad space, it doesn't go on the air.
I have been on a very low fat diet for over 14 years, and I have had no further relapses or progression. Other patients such as Montel Williams and Ann Romney have had similar results. Yet the MS society says that this diet is not recommended because it has not been adequately tested. It is obvious to me that the MS society is in cahoots with the drug makers to steer patients to drugs and away from other therapies.
http://www.swankmsdiet.org/ is the address for the Swank MS diet, which is low in saturated fat (less than 15 grams a day) and free of trans fat. This diet has been in use for almost 60 years, and it reduces the rate of relapses by over 90%. I strongly recommend reading the message board.
http://www.drmcdougall.com/ promotes a very low fat vegan diet. If you search this site you can find several testimonials from people whose MS has improved with diet. There is also an interview with Dr. Swank.
http://www.hacres.com/ promotes a mostly raw, low fat vegan lifestyle. This diet is also effective for MS, most likely because it does not have any animal fat, and vegetables are mostly very low in fat.... See More
http://www.takingcontrolofmultiplesclerosis.org/ is produced by Dr. George Jelinek, an Australian ER doc who has MS. He uses a modification of Swank's diet.
This is news.
I have found this to be true even among local doctors and hospitals. They are reluctant to release any scans or information and take their sweet time doing so after you have jumped through all their hoops. They will not talk to each other or send info to the specialists. When I requested some test result from one of my doctors last year, the office said they I would have to come in and fill out a formal request, then they would "get around to it" when they collected several requests because all their information older than 6 months is stored in a warehouse at another location.
I finally learned to request that a copy of each test at each follow up doctor's visit (which I keep and allow other doctors to make copies of) and I request actual scans and x-rays from the hospitals, lying and saying I am hand-carrying them to another doctor, then I keep them at home till I do need them for a doctor. Otherwise, they throw them away after a few years and doctors have nothing to compare the new scans to.
But will you ever see headlines announcing that kids shouldn't have antibiotics for most normal childhood illnesses? Maybe once, but then there will be a huge pushback campaign from pharma about how dangerous it is not to treat things. That sniffle might really be meningitis! Pharma has tens of thousands of people out there EVERY DAY driving from doctor's office to hospital, throwing luncheons and pushing pills. Common sense has few advocates, they aren't giving out trips to Florida, or issuing talking points press releases to NBC.
My best friend got a sore throat, seemingly like any other, when we were in middle school. Her parents were let-it-heal-itself-unless-it-seems-serious people. Her infection was strep throat. It progressed to rheumatic fever, and she almost died. Needless to say, they were more cautious with her younger siblings. My mother, on the other hand had a doctor and a nurse for parents (and for grandparents), and was therefore a bit more concerned with the appearance of sore throats. I was one of those kids who seemingly gets strep once a month. I always took the full dose of antibiotics. I shudder to think what might have happened if my mother had been less vigilant. Even if you're right, and taking those drugs made me get sick more often, they likely prevented the disease from worsening; I'll make that trade any day. Promise. This is completely different than the MS issue.
The problem with over-treating: now a lot of the antibiotics that we used to use can't be because we selected out for resistant organisms.
It's not a question of treating or not treating, but instead a question of appropriate treatment.