Internet allows people with disabilities or chronic illnesses to question medical authority

From The Canadian Press:

Rebecca Cooney may have a debilitating, degenerative disease, but that doesn't mean she's ready to automatically defer to the authority of the medical community.

"I've never been a person who thinks somebody else can make decisions for me. Even my doctors -- they're the experts, I take what they say, but I have my own mind and my own information," says Cooney, 42, who has been living with multiple sclerosis for the past 18 years.

"I'm not one that believes the Pope is the only one who can speak to God. I can speak to God myself."

There have always been patients with Cooney's independent bent. But these days there seems to be hordes of them, due in large measure to the extraordinary reach of the Internet.

A technology that makes a pioneering or profiteering clinic somewhere overseas a mere Google search away, the Internet is changing the nature of patient advocacy. It's amping up the activism.

And those more activist patients, who share information and strategies through email, discussion boards and Facebook, are actually in some cases altering the research agenda in fields such as cancer, alternative medicine and now multiple sclerosis.

Some want access to experimental drugs or therapies before science has proven that they are safe or useful. In other cases, they are agitating for a say in which theories, techniques or treatments get research funding.

Patients like Cooney are thrilled about what she describes as the huge power shift she has seen in the years since she was first diagnosed.

"The Internet -- email -- has really allowed me and most of the MS patients to really work in conjunction with the doctors, which we've never been able to do," she says.

"It used to be almost what your neurologist said or what your doctor said was God. You couldn't really debate it. You couldn't say anything. Because you didn't know."

"Now, I'm empowered. I can find out information."

Other players are not so enthusiastic, saying the change is fostering tension within disease advocacy organizations and between doctors and their patients.

Such is the case with multiple sclerosis, where the patient community is aflame with hope about a new and as-yet unproven claim by Dr. Paolo Zamboni that clogged neck veins may be triggering the disease or contributing to the destruction it wreaks. The condition has been dubbed chronic cerebrospinal venous insufficiency or CCSVI.

Individually, a number of MS patients have already flown to clinics in places like Poland to undergo a vein opening operation that has been given the hope-inspiring name "the liberation procedure."

Collectively many MS patients are pushing the MS Society of Canada and the National Multiple Sclerosis Society in the U.S. to fast-track funding for CCSVI research.

The societies have jointly issued a special call for research proposals and will review them next month. The first funding awards are due to be announced in June. Donors -- the societies get the bulk of their funding from the patient community -- are even being allowed to earmark donations specifically to CCSVI work.

Dr. Aaron Miller is a neurologist and head of the MS clinic at New York's Mount Sinai Medical Center. As the chief medical officer of the National Multiple Sclerosis Society, he tries to keep an open mind towards new claims about MS, noting that there are times when ideas from out of left field propel scientific advances.

He points to the example of stomach ulcers, which were long thought to be the product of stress. Then Barry Marshall and Robin Warren, two Australian researchers, proved they are caused by a bacterium, Helicobacter pylori and are treatable with antibiotics.

Marshall and Warren won the 2005 Nobel Prize for Medicine. Still, those kinds of paradigm shifting successes aren't everyday occurrences. Miller suspects CCSVI isn't going to join that list but he fears that answer won't be arrived at quickly or cheaply.

"We know that research dollars are extremely scarce, especially these days. And when you have to divert large sums of money to investigate something that's probably going to be barking up the wrong tree, it certainly is distressing," Miller says.

He points out that the MS community has seen other provocative claims in the past, prior to the Internet's emergence as a communications tool for the masses. In the early 1990s, for instance, the TV newsmagazine "60 Minutes" aired a piece advancing the notion dental amalgam might be the cause of MS. Patients flocked to dentists to have old-fashioned fillings removed.

"But the pace at which this happens now and the numbers of people to whom these stories and the information reaches is astronomical compared to what it once was," says Miller, who notes that Internet counselling has become a part of his routine interactions with patients.

"It's a real challenge in how to interact with patients on issues like this," he admits.

The scenario is unfolding in other subspecialties of medicine too.

Dr. Maurie Markman, vice-president for clinical research at the University of Texas M.D. Anderson Cancer Center, says the advocacy community has long been vocal in cancer care and research.

Some bristle when they are told putative treatments need to be tested in staged clinical trials, he says.

"Online, the New England Journal of Medicine has no more authority than Mr. Smith's or Mrs. Smith's website telling you that `Here's the cure for cancer,"' Markman says.

He explains the kind of pushback those insisting on proper trials sometimes encounter: "Five thousand people who are online say it's correct. So who are you ... Dr. Scientist, to tell me I'm wrong?"

What's the answer? "It's not confrontation," Markman continues. "It's discussion and an awful lot more effort to explain."

Still, a confrontational dynamic can emerge.

The hesitancy of MS specialists towards CCSVI has frustrated and angered some patients. Some doctors who are viewed as impeding access to the treatment have received abusive hate mail. People on both sides of the divide say the situation has given rise to an us-versus-them mentality.

"I do think the Internet has created an us-and-them thing," admits Cooney, who has co-founded a group called MS Liberation that is lobbying for the procedure to be available in Canada.

"I don't like it. I wish it would stop. But ... I don't think it will until both people (parties) acknowledge that the playing field has changed."

"I think the patients are not giving the neurologists and the doctors the time to really learn about this and to investigate it properly. But I also think the neurologists don't acknowledge that it's a different ball game."

"They're used to holding back information from the patients. And what's happening is they can't do that anymore."