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Margaret Wente

MS patients with a different message Add to ...

Mark Pickup, 57, was diagnosed with multiple sclerosis back in 1984. The disease has not been kind to him. He can't walk, and gets around in an electric wheelchair. Of all his limbs, only his left arm is still functional.

Mr. Pickup is a staunch unbeliever in liberation therapy. "When I heard the words 'liberation therapy,' the red flags went up right away," he told me. "I've had so many cures presented to me through the years. Vitamin therapy. Bee venom. If I had a dollar for them all, I could pay off my mortgage."

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Every "cure" has turned out to be a hoax or overstated. He believes this one will be no different.

Amid the outraged demands for trials and treatment, and the claims of remarkable remissions, another group of MS patients are starting to speak out: the skeptics. Last week, Mr. Pickup, who lives in Alberta, wrote his provincial health minister and urged him to resist popular pressure. He's intimately familiar with the desperation, the hope and the longing of MS patients whose bodies are betraying them. "I would imagine myself running in slow motion with my kids through a park. And then I'd wake up and say, 'You bonehead!' "

Many MS patients experience dramatic, unpredictable remissions. The disease's uncertain course can make it difficult to assess the effectiveness of different treatments. "I'd go to bed and wake up, and suddenly I'd be walking again," Mr. Pickup says. But sooner or later, the symptoms always came back.

Richard Oakey is another skeptic. The 45-year-old Toronto man was diagnosed with MS three years ago. "I'm lucky because I have a milder form of the disease," he says. When he heard about liberation therapy - it's based on the theory that vein blockages somehow cause or contribute to the disease - he was quick to check it out. If the treatment might improve his prognosis, why not give it a try?

In May, Mr. Oakey and five other Canadians flew to India's Jaipur Golden Hospital - a private facility that will unblock your veins for $12,500. In testimonial videos on the Web, enthusiastic patients describe how great they feel after the procedure. One excited husband says, "This morning, she stood up from her wheelchair and walked across the room. That tells me she'll be jogging in a month!"

Mr. Oakey's group was treated for free, as part of a clinical trial. All it cost was the airfare. But he came back unimpressed. Although the hospital was modern and well-staffed, and everyone was kind and caring, the clinical standards struck him as extremely lax. No one had reviewed his file. No one even knew if his veins were blocked, and there was no mention of any kind of follow-up. They found out his veins weren't blocked. He'd flown to India for nothing.

Some people who receive liberation therapy describe results so insignificant that it almost sounds like wishful thinking. I spoke with a woman who, after heavy pressure from her family, went on the same trip to India. Now, she says, she can shake hands again. "The improvements have been small, but for me they've been huge." She expects the improvements to continue, and she's frustrated that governments have been so slow to act.

A lot of outfits are marketing hope these days. New "liberation" clinics are opening around the globe - in Mexico, Costa Rica, Poland, Bulgaria - and you can get quotes for travel packages on request. Mr. Oakey regularly gets Facebook ads that say, "Costa Rica now taking 75 patients a month!"

Both men expect they'll get a bunch of hate mail for speaking out. But they worry about the devastation that can result from false hope, and the money being made from feeding it. Mark Pickup is confident that a real cure will come one day, though not in time for him. Meantime, he says, "we shouldn't make decisions based on who's yelling the loudest."

 

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