Tai Chi For Fibromyalgia: How Evidence Is Done

Aspiring hyperbaric medicine clinical investigators take note. In last month's New England Journal of Medicine, "A Randomized Trial of Tai Chi for Fibromyalgia" put the lie to the myth that it's next to impossible to produce first-class evidence for alternative medicine. Still, it takes money, plenty of money. Big Pharma didn't fund this study, Big Government did—the National Center for Complementary and Alternative Medicine, to be precise, a section of the National Institutes of Health. The results should be motivating for HBOT researchers, who could secure like funding if they tried harder, and especially welcome news for people living with fibromyalgia.

O2.O is the news blog of HyperbaricLink, the independent web guide to hyperbaric oxygen therapy.

Online Patient Communities: From Openness To Outcomes

How wonderful to see so many online patient communities overflowing with people, stories, and data, data, data. All this new openness, allowing real-time access to real data on real patients experiencing real-world therapies, must rank among the highest and best uses of the Internet today.

We're especially impressed with the bold attitude and steady growth of PatientsLikeMe, now 70,000 members strong in 15 disease communities. There is tremendous strength in numbers like these. Last month in JMIR, the Journal of Medical Internet Research, the company's research and development team published the results of a user survey. They found patients benefiting from each other in ways never possible before. Some switched doctors. Many started, switched, or stopped medications or changed dosages. Nearly all learned something new about their conditions and symptoms. And the scientists who follow these populations are gaining new insights that will inform new research and development for decades to come.

We cannot and should not depend on prospective, randomized clinical trials as the sole means of advancing evidence-based medicine for every innovative therapy. Observational research, using patient registries powered by the web, helps serious clinical investigators gather and analyze invaluable data on how drugs and devices actually work for larger patient populations.

We aspire to create similar opportunities for the HBOT community to openly share information on patient-reported outcomes for a range of off-label indications.

Until then we urge O2.0 readers and HyperbaricLink visitors who are currently undergoing hyperbaric oxygen therapy for chronic fatigue syndrome and fibromyalgia (almost 16,000 members) and multiple sclerosis (over 20,000 members) to please join those PatientsLikeMe communities. Go get involved, be counted, and help advance the science and practice of hyperbaric medicine.

Tell them about your hyperbaric experience. And tell them we sent you.

Fibromyalgia: Listening To The Voices

Yesterday the excellent Patient Voices series in the New York Times got around to fibromyalgia, and it's another must-see audio slideshow for patients, clinicians, and anyone with any interest in the disease. Also check out the accompanying Well blog and reader discussion, where for once we got a word in edgewise. That's us behind comment #48:

Let’s dispense with the arrogance and guesswork and agree that skepticism (Dr Hirschberg #1) may be statistically safe and expedient but “I don’t know” (bill #24) is the wiser approach to FM. How little we understand. Not long ago, remember, the medical community blamed peptic ulcers on spicy diets and stress-filled lifestyles. Blamed the patients, in other words, millions upon millions of them. The culprit turned out to be a specific bacterium, H. pylori, today diagnosed with a simple breath test and treated with common antibiotics. Instead of taking shortcuts to a nondiagnosis, the unlistening and uncaring physician should try some humility in the face of such a mystery.

We're not saying hyperbaric oxygen therapy is the answer. We're saying let's ask the right questions, listen to real patients like these, and rely upon real clinical evidence to light the way forward.

PatientsLikeMe: Fanned, Followed, Fast Companied

Fast Company magazine just recognized what we've long known about PatientsLikeMe, naming the company among its most innovative of 2010. Innovative indeed—and right up our alley. A beautifully conceived website "committed to providing a better, more effective way to capture valuable results and share them with patients, healthcare professionals, and industry organizations that are trying to treat the disease," PatientsLikeMe ingeniously balances patients' desire for privacy with their need for openness.

For patients (maybe like you) this important site represents the highest and best use of the Internet we can imagine, and as it expands we're eager to see our HyperbaricLink online community participate and benefit. Especially popular is PatientsLikeMe's fibromyalgia and chronic fatigue syndrome section, some 12,000 strong and growing. But there's nobody home in the hyperbaric oxygen therapy room, which O2.0 readers will find in move-in condition. And it's free to join.

Off-Label HBOT: Arthritis

Arthritis is so broad a disease state, with so many treatment options, we can't see hyperbaric oxygen ever gaining any real currency. Yet we find, combined with our reading of the medical literature on other chronic pain disorders, rather promising clinical evidence that HBOT can help reduce the pain and inflammation associated with arthritis. And we suppose any drug-free alternative might be welcome news for many of the 19 million patients with rheumatoid (RA) and osteoarthritis (OA), fibromyalgia, gout, lupus, and more than 100 other forms of this devastating disease—the leading cause of disability in the US today.

Jump to our new arthritis page to learn more and to use our HyperbaricLink Evidence Index to guide your personal research.

Off-Label HBOT: Fibromyalgia

Blaming the patient is so much easier than working the problem. Especially in light of the recent announcement that a virus may cause chronic fatigue syndrome (the jury's still out), we should all of us refrain from calling anyone's pain and suffering imaginary. Soon science may discover what really afflicts people with fibromyalgia. Until then, hyperbaric oxygen therapy might just help relieve the pain and tenderness, if not the fatigue and sleeplessness. We're on the lookout for studies replicating the promising work out of Turkey.

Jump to our new fibromyalgia page to learn more and to use our HyperbaricLink Evidence Index to guide your personal research.

Evidence: Living In A World Of Pain

A word of advice to the aspiring HBOT researcher: Don't swing for the left field bleachers when all the team needs is a solid base hit. Oh, and don't complain about the lack of reimbursement if you haven't published a tight little study in a nice little journal. Which leads us to today's musical question: Why are we finding all the most promising evidence on hyperbaric oxygen therapy for chronic pain coming out of a military training hospital in Istanbul? Don't answer. We'll take it. More here soon, and new HyperbaricLink condition pages, on chronic regional pain syndrome, fibromyalgia, myofacial syndrome, migraine, and cluster headache.