Sunday, March 6, 2011
Two ME/CFS articles (and more) were published in major American newspapers this weekend. The questions I ask are always the same. Why? - and why now? What are these journalists up to, and why are they so wide of the mark?
The first article in the New York Times was written by Mr. David Tuller. The article had a catchy little title, "Troubles of Chronic Fatigue start with defining it". In this article Mr. Tuller wrestles with the various historical difficulties of defining the patient population with this neuro-immune illness. In doing so he writes a long, convoluted treatise which effectively further confuses the reader. I defy any regular (average) reader to take anything useful away from this article.
The NY Times should encourage comments on these CFS articles. Various patients and advocates write terrifically articulate and reasoned comments. After all, they have "an attachment to the subject". My suggestion is that the NY Times should bypass Mr. Tuller and hire a few of these very sharp patients who write articulate and concise comments.
Mr. Tuller wrote what appeared to be quite a fine article on January 3, 2011. It looked promising that it had finally dawned on him (and his editor) that there was a journalistic story to be told. Optimist that I am, I thought that perhaps this would be the beginning of something different from the slop that they had been serving up for years. After all, many people read this newspaper. Instead Mr. Tuller has immediately lost the story line, and has veered off into the ditch. At best one could hope that his last two very weak articles are background filler to develop a more cogent storyline - but as of now, this remains only a hope. I am not holding my breath.
I asked myself what this article has to do with my situation and my daughter's? Nothing - it has nothing to do with either. This story is more about Mr. Tuller and his needs than any useful presentation concerning those suffering from this difficult illness. There are more forceful and honest ways to present the problem of characterizing this illness, starting with exposing the CDC's labeling this very serious neuro-immune illness as "Chronic Fatigue Syndrome". In a certain light this might be seen as a form of hate speech.
Over the years the various definitions of this neuro-immune illness have been constructed to disallow "neutrals" from being able to characterize or define the patient population with any consistency - thus interfering with any meaningful or exchangeable research results. This shell game has been going on for years. More recently, the Canadian consensus has narrowed and focussed the criteria to a meaningful set of symptoms that are sufficient and successful in identifying this patient population with great confidence. Yet, in spite of this, the confused and disingenous characterizations of this neuro- immune illness have been extended and sustained. Such is the effect of articles like Mr. Tuller's.
In reality, the problem of identifying ME/CFS neuro-immune patients is much simpler. I myself, a sculptor, can diagnose a ME/CFS patient in ten minutes with near 100% accuracy. Dr David Bell reiterates this idea that identification is not difficult, and he states that no other illness presents itself in this fashion. Why is this important piece of information buried underneath all this other crap in Mr. Tuller's article?
Repeat: NY Times should publish some of the better comments as the foundation of future articles. Not only will the articles be more legible, they will be much shorter. The Times could string together two or three of the best comments as the structural center of an article - and the general readership would benefit from having some clarity shown on the issue of disease definition - and other items.
Stirring this pot again is a dead-end, and it is unfathomable that Mr. Tuller would not know this. No - this is deliberate misdirection.
The second article, a full page and a half in the weekend section of the WSJ, was by Amy Marcus. Ms. Marcus has written a remarkable set of articles following this unfolding disease drama - the attachment of a retrovirus to this nasty illness. Here Ms. Marcus writes a human interest story that focusses on a real American hero, Dr. David Bell. Dr. Bell is a pediatrician who has dealt for years with a 1984 neuro-immune outbreak in Lyndonville, NY. It is a fascinating story, and Dr. Bell deserves every bit of attention that he gets for his great humane efforts on behalf of his patients and the rest of us.
And yet this recent article did little or nothing to advance the current, extremely important story line.
The big question is, why now? All of a sudden it is like 1991. What does this story have to do with the current crisis in research into this nasty and debilitating illness? Is this long article supposed to raise consciousness? If Ms. Marcus has a point, couldn't she be more forceful in presenting it? In this deadly "science" struggle currently going on, subtlety is not what is needed to advance the story line.
Interestingly, Ms. Marcus waits until the end of the article to say what she should have been said at the beginning - and which could have been the foundation stone of an important article. (In the first place 67% of current readership cannot make it to the end of any article.) At the end of her very long article, Dr. Bell states his greatest fear (and mine too):
"The picture (of deFreitas) reminds him of what happened in the past, when conflicting studies caused scientists to lose interest in the retrovirus. 'My greatest fear,' Dr. Bell says, 'is that people will throw up their hands and say they are not going to pursue it.'"
Some are happy with any journalistic coverage of CFS. I am not. I hate to say it, but I think we are going in circles. What I see is a recycling of past confusions and past stories.
What we need is some journalistic clarity - and a bit of courage. Is it necessary to tell these reporters what the story line actually is? Is it that difficult to decipher?