Wednesday, February 08, 2012

CFIDS SETBACK

"A 2010 paper from the agency, for example, galled patients with the conclusion that they suffer disproportionately from 'paranoid, schizoid, avoidant, obsessive-compulsive and depressive personality disorders.'"

As at least some readers know, I suffer from Chronic Fatigue Immune Deficiency Syndrome (or, just Chronic Fatigue), a debilitating set of symptoms doctors recognize but can't quite identify or find the cause of. Researchers have put some effort into finding out more about CFIDS and have discovered that for example Fibromyalgia is a specific disease that was once thought to be CFIDS.

A while back I wrote a bit about the syndrome and how it affects me, in the hopes of helping folks understand it better. Because its not visible and so nebulous, for decades people thought it was just laziness or an excuse to avoid labor. It was considered more a psychological condition - more than once I was told by a doctor to get psychiatric help. I restrained my violent reaction.

A few years ago, a lab claimed to have discovered a viral source for CFIDS, which would explain at least some people's problems. Dr Judy Mitkovits at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada claimed that a certain mouse retro-virus was present in many suffers of CFIDS which suggested that antiviral medication such as used for AIDS might help.

Now, since I've been this way since very early childhood, I doubt any sort of virus was involved - mine appears to be more hereditary than viral, but it was good news that some work was being done and perhaps some might be helped. The problem is... it turns out the research was trash. David Tuller at the New York Times writes:
More recently, however, the hopes of these patients have suffered an extraordinary battering. In a scientific reversal as dramatic and strange as any in recent memory, the finding has been officially discredited; a string of subsequent studies failed to confirm it, and most scientists have attributed the initial results to laboratory contamination. In late December, the original paper, published in the journal Science, and one other study that appeared to support it were retracted within days of each other.

As the published evidence for the hypothesis fell apart, a legal melodrama erupted, dismaying and demoralizing patients and many members of the scientific community. Dr. Mikovits was even briefly jailed in California on charges of theft made by the institute.

“I’m stunned that it’s come to this point,” said Fred Friedberg, a professor at Stony Brook University Medical Center and president of the International Association for C.F.S./M.E., a scientific organization. “This is a really sad unraveling of something that was perhaps going to generate a whole new direction in this illness.”
Dr Mikovits is actually working for the US government on a large government-sponsored study being spearheaded by Dr. Ian Lipkin, but the future of that position is now uncertain.

The initial report of Dr Mitkovits' study was immediately met with challenges by other scientists, because apparently her work was questionable and its been revealed now that she simply invented data when needed.

In a sense, this is good news. Millions of Americans alone suffer from this malady and any attention drawn to the research is helpful. But at the same time its frustrating for many who had hopes of real help and a possible future. And its part of a very unfortunate, infuriating pattern in science.

Over and over we keep finding out that established, certain studies and developments in science have been junk. That researchers fudged or just outright invented data, that they doctored their work, that they produced results they knew were trash. Over and over, things we've been repeatedly assured are so certain and absolute have ended up being rejected and reversed.

And to make matters worse, advocacy groups and activists put out studies which the media runs with and they were junk from top to bottom. Oat bran will save your life! Oat bran will kill you and your children! Conservatives are stupid and insane! Mother's milk is bad for children! Popcorn gives you cancer! On and on it goes.

And the result is that people are learning to not trust science or mathematics, because of how fast and loose some play with it - and worse, how an ignorant, credulous media hypes the results. I can't help but think of the movie Brain Candy in which a researcher comes up with a new, super effective anti-depressant and suddenly becomes a massive celebrity, then is demonized because the poorly-tested drug ends up putting people in a coma.

Maybe if science wasn't so politicized, so profitable, and so hyped by the media, better work could be done. Certainly the more celebrated, high profile, and lucrative the field, the less trustworthy it so often becomes. The Piltdown Man was considered "settled science" that no credible scientist would question, until skeptics proved it to be trash.

People like me look at the big discoveries and presumptions of the last century and wonder how many of them are junk, too?

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