Dear New York Times, You do realize that there is a body of research about ME/CFS now and that with a mere one or two more phone calls, you could find out all about it? So here's their idea of a William Reeves obituary. Let's walk through this effort by Denise Grady. Reeves died on Friday, so they had a good couple days to assess his legacy in light of what we now know. If they had bothered to do that, that is. http://www.nytimes.com/2012/08/09/h...ause-of-fatigue-syndrome-dies-at-69.html?_r=1 Headline: Dr. William C. Reeves, Who Sought Cause of Fatigue Syndrome, Dies at 69 [Note: "Fatigue Syndrome" is not now and has never been a name for ME/CFS. I don't know why the New York Times has decided all on their own to make up this usage, but they *consistently* use it in their headlines on ME/CFS coverage. They've even tacked it onto David Tuller's articles (and I know that's not his fault, because the editors write the headlines, not the reporters.) It's not that it's politically incorrect: it's that it's a basic, knucklehead copyediting mistake.] Graf 1: Reeves "infuriated patients with the ailment by suggesting that [ME/CFS] was linked to psychological problems rather than a virus." [Here we set up the false dichotomy that will be repeated throughout the rest of the article that the ONLY TWO POSSIBLE ETIOLOGIES for ME/CFS are (1) psychological problems and (2) viral infection. And that if you do not agree that the evidence supports ME/CFS as a psychogenic syndrome, you must therefore be a supporter of a "viral hypothesis." The reporter does not seem to be aware of the neurological and immunological aspects of ME/CFS. The reporter does not seem to have many sources that can actually speak to the current state of the science.] Grafs 3-5: [OK, there are a few things here that are expressed in a somewhat screwy manner, but no huge boners. The reader would, of course, be better advised to read David Tuller's classic and comprehensive http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ to get the full and accurate story about what happened there.] Graf 5: [Here we see the first use of "chronic fatigue" as a synonym for ME/CFS. Again, this is a usage error to which the New York Times stubbornly clings, for reasons best known to itself. God knows we're all sick of the contentiousness about the disease name, but you can't just substitute the name of a symptom - one that's common to about a million other diseases - for the name of the actual disease. [As little-loved as the name "Chronic Fatigue Syndrome" might, the NYT's unique alternative choice here makes about as much sense as writing a story about MS, correctly referring to it as "multiple sclerosis" on first mention, and subsequently calling it "bad eyesight syndrome" or "clumsiness syndrome." That would look kind of like the reporter didn't know anything about her topic, wouldn't it?] Graf 6: "Many patients believe that research should focus on looking for viruses or other infections that might cause the syndrome." [Again, we are led to understand that viral etiology is now and has always been the only other possible cause of ME/CFS besides the psychosocial theory. Do the words "immune system disorder" even APPEAR in this article? (checks) Nope.] "But Dr. Reeves grew more and more skeptical, saying the data did not support that approach. Studies that he led suggested that stress and a history of physical, sexual or emotional abuse were contributing factors, angering many patients." [His studies suggested that *all by themselves*, you see. They weren't deliberately constructed to *look* for that kind of problem in ME/CFS patients based upon a preconceived idea. He didn't *mean* to find all those psychological problems, they just blatantly forced themselves upon him when he was barely even looking.] Graf 7: “He tried desperately hard to find the etiology, whether it was physiological or an infectious disease or whatever,” said Thomas M. Folks, a former colleague at the disease centers who is now the associate director for research resources at the Southwest National Primate Research Center in San Antonio. “But his research just continually led to a noninfectious etiology.” [Have you noticed the theme here yet? If it's not an infectious etiology - or at least not one we can properly characterize at this time using current tools and assumptions - it must necessarily be the Other Thing. Spot the logical fallacy! But notice how Graf 6 and Graf 7, taken together, lead us to believe that Reeves was forced, FORCED I tell you, to look for psychological causes and find the evidence for them convincing - because he couldn't find an infectious etiology and meanwhile these psychological explanations just OBTRUDED themselves.] Graf 7: Patients also resented his resistance to changing the name of the syndrome to something that sounded more medically legitimate than “chronic fatigue,” and deplored his use of a case definition that many said cast too wide a net and included people who had depression, not chronic fatigue syndrome. [Your own damn copy editors should have resisted you on this one, Denise Grady of the NYT, because "chronic fatigue" isn't the name of any disease.] Graf 11: The cause of the syndrome remains a mystery. Results are expected within the next few months from a major study designed to find out whether viruses or other infections somehow [emphasis mine] touch it off. [Translation: The reporter didn't really do but a speck of homework. The use of the word "somehow" is interesting in this context. Just one little word, but does it sound a bit...dismissive? Or like cover for the fact that the reporter *genuinely doesn't understand* how any of the proposed viral etiologies might actually work? The reporter has apparently heard of the Lipkin study and come up with the most simplistic possible way to describe it. The reporter has apparently *not* heard of Komaroff, Jason, Fluge and Mella, Glaser, Broderick, Natelson, the Lights, Kogelnik, Montoya, Nadelson, Snell and Stevens, Baraniuk, Klimas, Theoharides ...well, I'm missing plenty, but those are just off the top of my head.] *** And let me just say, for the thousandth time: It is NOT appropriate to attribute to "patients," and patients alone, ideas and opinions that are widely shared in the ME/CFS research community. In fact, the only way you can even think that's a correct thing to say is to pretend that the legitimate, academic ME/CFS research community does not exist -- in order to maintain the false impression that "patients" believe what they believe based on their own irrational opinions, or their nutty groupthink, or something. The media repeats the meme over and over again that "Patient groups [believe/object to/criticize] [this that and the other thing]" ...and conveniently forget to mention that substantial numbers of international scientists who conduct real biomedical research have actual evidence to bring to bear on these questions, and that patients are aware of this research. We're not just arguing from intuition and our own experience - not that much of anyone gives those things any weight - we're very aware that what we sense and feel about our own disease being physiological in nature is being supported by the research more and more as the research becomes more sophisticated.