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.

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: Chronic Fatigue Syndrome

We remain giddy about the identification of XMRV as the possible viral culprit behind chronic fatigue syndrome. What an exciting new era in CFS research. What high new hopes for all who have suffered both the pain and the disrespect too often associated with this all too real and prevalent disorder. But after a month scouring the medical literature, and hazarding a few hopeful posts, we've found scant evidence to support the use of hyperbaric oxygen to treat CFS. Slight relief from general fatigue and some potentially relevant data on HIV-related fatigue will keep us digging.

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

Chronic Fatigue Syndrome: Let's Call This...

This may be premature, considering the freshness of the new evidence, but we've decided to start calling chronic fatigue syndrome XMRV/CFS. We figure XMRV is to chronic fatigue syndrome as HIV is to acquired immune deficiency syndrome. With this name change we wish for a sea change in the primary research and public health initiatives focusing squarely on the xenotropic murine leukemia virus-related virus itself. We mightn't have much good news to report on the efficacy of HBOT, but soon we'll post a new XMRV/CFS page on HyperbaricLink, as advertised.

Chronic Fatigue Syndrome: Lose The Name

Yes, indeed, the very name of the disease is changing as we read and study up for next week's CFS posting on HyperbaricLink. Now that's what we call progress. Will it be myalgic encephalomyelitis or X-associated neuroimmune disease or something brand new? Read the excellent op-ed piece by Hillary Johnson in today's NYTimes.

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.

Courage And Persistence In Discovery

When Columbus sailed the ocean blue the best minds of Europe were pretty sure the world was round. Now, of course, it's politically incorrect to say the man discovered anything. But he changed everything. By articulating a hypothesis, designing a study, applying for funding, conducting an experiment, and publishing the findings, he blunted the edge of the Flat Earth for once and for all.

So he was wrong about the Indians. So he came home without the spices. So we've sometimes evilly exploited the place and lately taken to using it as a base to bomb the Moon. Not his fault.

In our exploration of off-label and investigational indications for hyperbaric oxygen therapy, we're ever mindful of the hard work and long patience good research demands. It's a vital if sometimes thankless pursuit. (No bucks, no Buck Rogers.) But true healing begins with true understanding. Take the all-too-recent discovery that H. pylori, not stress, causes most peptic ulcers. Or last week's startling and welcome news that a contagious retrovirus XMRV, not some imaginary yuppie flu, may be the chief cause of chronic fatigue syndrome. All of a sudden medical science can locate 1 to 4 million Americans with CFS on the map. A voyage of discovery ends, a New World of hope begins. O Happy Day, Christopher and everyone.