I guess the New York Times lost David Tuller's number

[urbantravels]

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.

 

[Tally]

Just one little note, his son said the cause of his father's death has not been determined.

 

[urbantravels]

Ooops. Thanks for pointing out my mistake. Not always as careful as I should be when ranting. I've deleted that part of my rant.

 

[Ember]

""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...."

The New York Times might have noted the way David Tuller describes Dr. Reeves' epidemiologic method for identifying people with CFS (emphasis added):

After Dr. Reeves unveiled a revised epidemiologic method for identifying people with CFS, the CDC estimated in 2007 that there were 4 million people in the U.S. with the illness—a remarkable ten-fold increase over the previous CDC estimate in 2003. Other experts dismissed this dramatic rise as an artifact of the agency’s poor epidemiology. Subsequent research reported that the new CDC approach misclassified people with primary depression as having chronic fatigue syndrome, when they did not; that kind of misclassification could easily lead to increased prevalence rates as well as false and possibly harmful research results.

David Tuller adds that Dr. Reeves' definition:

blurred and expanded rather than clarified the disease boundaries. While some advocates believed the increased estimates would focus more attention on the illness and should therefore be embraced, many others—including leading epidemiologists–believed that the expanded category could make it harder to isolate physiological correlates; that failure, in turn, would make it more likely that others would continue to perceive it to be largely a psychiatric illness.

 

[*GG*]

NYT is pretty much useless, if you don't expect much from them, you will not be let down. And they wonder why they are bleeding subscribers? They are no longer the paper of record, so I guess that makes them one of thousdands of papers. Whoop de do.

GG

 

[taniaaust1]

I personally think she did a good job on this obituary esp since this person wasnt connected to CFS field. Overall.. it was balanced as many things which brought some balance to this article were put into it. It isnt shocking like it could of been if someone wasnt trying to put a balanced article forth.

eg some things in it which I thought were good that she put in which brought truth and balance to it all.. hence I think she probably did put a lot of time into researching the illness.

Its cause is unknown, symptoms can last for years, and there is no effective treatment.

No mention of the bullshit of the illness being fixed by CBT or GET or anything about psychological treatments fixing CFS.

More women than men have the syndrome, and many people who have it feel brushed off by doctors, labeled neurotic or malingering.

it gave people an idea of what may be happening with doctors and us.

When Dr. Reeves took charge of research on the syndrome, patients and advocacy groups had been complaining that the government was not taking it seriously or trying hard enough to find its cause. Dr. Reeves believed the disease was real, and many patients were gratified when, in 1998, he revealed that officials at the disease centers had spent money intended for chronic fatigue research on other diseases, and had lied to Congress about it.

In 1999, Dr. Reeves’s claims were confirmed: a report by the Office of Inspector General found that from 1995 to 1998, $8.8 million allocated by Congress to chronic fatigue had gone to other diseases like measles and polio, and another $4 million could not be fully accounted for because of murky bookkeeping.

It gives true implications that there was issues with this and the government. It also tells of the corruption in how our research money was wrongly spent.

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.

I loved how the article actually told that many of us have issues with the case definition and why.

A growing chorus of bloggers and advocacy groups denounced Dr. Reeves, and in 2009 an advisory committee to the Department of Health and Human Services recommended “progressive leadership” for the chronic fatigue program. In 2010, without public explanation, the disease centers assigned Dr. Reeves to a new post as senior adviser for mental health surveillance, and put Dr. Unger in charge of chronic fatigue.

That fact it mentions how he was "removed" from being in charge of CFS program... well that is great to have in an article... Im amazed the reporter told it how it was and she put all that stuff in his obituary.

The article tried to make things clear about CFS eg

The cause has not yet been determined, his son, Will, said.

Anyway..thou there are a few faults here and there (the big one I think was refering to CFS as "chronic fatigue" and the confusion around not knowing that chronic fatigue is not CFS) I do think the reporter must of spent a lot of time researching to put this article together in the way she did and should be applauded for her unbiased effort with all this.

Thank you to Denise Grady for such a balanced article and putting the time and effort into it to come up with all that. Thank you New York Times. We need more unbiased reporters like Denise.

 

[Ember]

Denise Grady's article declares itself to be about “Dr. William C. Reeves, an epidemiologist who fought his own federal agency to obtain funds to study chronic fatigue syndrome, then infuriated patients with the ailment by suggesting that it was linked to psychological problems rather than a virus....”

Note the weight of authority that the article uses first in its narrative:

“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.... “But his research just continually led to a noninfectious etiology.”

Compare that bold statement with the subsequent, embedded observation that patients “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.”

Gone is David Tuller's “subsequent research reported...” or “many others—including leading epidemiologists—believed....” The opposing voice is given to “infuriated patients with the ailment.”

In an article about the epidemiologist who authored “Chronic Fatigue Syndrome – A clinically empirical approach to its definition and study,” a CFS definition now in general disrepute, this reporting is hardly unbiased.

 

[urbantravels]

Compare that bold statement with the subsequent, embedded observation that patients “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.”

Gone is David Tuller's “subsequent research reported...” or “many others—including leading epidemiologists—believed....” The opposing voice is given to “infuriated patients with the ailment.”

That's the very thing....but a way more articulate way of putting it than my infuriated (heh) rantings.

And this false dichotomy gets reported again and again in the press...it has always been a major theme of the press coverage press releases about the PACE trial; it was repeated again about XMRV; and it ALWAYS comes up in any discussion of the psychosomatic theory of the disease. It's all about the patients being pissy because they take the idea as an insult: never about whether the theory is scientifically well-supported or not.

 

[Esther12]

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.]

This sort of thing is so common in media coverage of CFS.

It's so one-sided and misleading. I wonder who it comes from?

 

[urbantravels]

It's so one-sided and misleading. I wonder who it comes from?

Gee, I wonder. As I know I've said a million times before, it's a shame there is no peer review for press releases.

You can spin your research all kinds of ways in press releases, and since most outlets don't have the resources or the inclination to do any original science reporting, they'll mostly just regurgitate what the press release says.

I'm taking special umbrage at the NYT, not because I think the NYT is otherwise great overall or otherwise sucks overall, but because the NYT is *supposed* to be a leader in science coverage. If this is the best they can do, there's little hope for the other outlets.