POLIO TIPS AND TECHNIQUES: Bad Research Part II–Publishing by Press Release

By Dr. Richard L. Bruno

Last issue, I described a 2006 Mayo Clinic article presenting a 15-year follow-up study of 38 polio survivors in which the authors omitted data from their own two previously published articles, which found progressive muscle weakness and loss of ability in those very same polio survivors, and concluded “our polio survivors did not age any differently than a normal population.”

There is a more dangerous issue than the publication of twisted, truncated and tortured data in a little-read medical journal. The bigger problem is that the authors “published” their findings in a press release. So, when the media got hold of the distorted data, the headline generated was a dismissive, “People who survive polio in childhood will not suffer further effects later in life.”

Unfortunately, “publishing” research findings in media press releases is the new trend in medicine. Forget peer-reviewed medical journals. Just put your findings in a press release and wait for the reporters to start calling.

Drug companies, universities, hospitals (frequently, the Mayo Clinic), national medical associations-even the Corn Refi ners Association- distribute press releases about unpublished medical research to reporters. Research presented at medical conferences that frequently is never published is also distributed to reporters by press release. A recent release from the American Urological Association conference begins, “Young researchers presented innovative, early-stage research.” I don’t know about you, but I’d like to wait until older researchers actually publish late-stage research before deciding what I should do with my urological system.

The latest study involving polio survivors was released to the press on August 26, 2008: “Pharmalink AB today announces positive results from a…study of Xepole, its candidate for the treatment of post-polio syndrome (PPS). The data have shown the candidate to be effective and well tolerated with no serious adverse events attributed to the product being reported in the treated patients. Xepole, the first medical PPS treatment, is an injectable biologic product, administered once per 9-12 months. This novel treatment modality for PPS (caused) a significant reduction of symptoms of PPS while also showing that Xepole is safe and well tolerated with few or no side-effects. Full results are to be published in a peer review journal.”

Having reviewed, consulted on and performed studies of drugs to treat post-polio symptoms, believe me I know the difficulty of designing and conducting drug studies. The biggest issue with PPS treatment studies is that data on symptoms must be collected daily-not weekly, let alone monthly or at the beginning and end of a study-because polio survivors’ symptoms change daily, if not hourly. I want to see the specific details of the design and execution of the Xepole study when “full results” are indeed “published in a peer-review journal,” and not take the word of the drug company’s press release that Xepole is “the first medical PPS treatment…effective and well tolerated.”

As my last column showed, it’s not hard to get crummy research published, especially in infrequently-read journals. But, for researchers to go over the heads of all peer-reviewed medical journals and just “publish” their findings in the media leaves us all open to unsubstantiated claims that can promote incorrect beliefs about our bodies, emotional upset and possibly dangerous behavior. If polio survivors believe that they do “not age any differently than a normal population” or that Xepole will cure treat their PPS symptoms, and they keep overusing their poliovirus-damaged neurons, polio survivors will deteriorate, as studies of thousands of polio survivors-not just the Mayo 38-have shown.

Much of the research reported by the media turns out to be crap. Medical “facts” presented by the media change from week to week. Chocolate causes obesity, then fights cancer; a daily glass of red wine causes alcoholism, and then prevents heart disease. So, it’s vital, in this age of the 24 hour news cycle and the Internet, that we are extremely cautious when medical research is “published” via press release and the media. Again, be it PPS or any medical condition, we need to read the actual published research studies, not just listen to stories on TV and radio or read newspaper articles or press releases, to understand what’s happening to our bodies and really know how to take care of ourselves.

Dr. Richard L. Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for Post-Polio Education and Research at Englewood (NJ) Hospital and Medical Center. E-mail rbruno@unitedspinal.org.