NYT's unfounded leap: Lou Gehrig might not have had Lou Gehrig's disease

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This was one time when the headline was OK, but the story that followed had our heads spinning. “Study Says Brain Trauma Can Mimic Lou Gehrig’s Disease” is a story that was troubling on a number of fronts. It reported on a study which at the time had not yet been published suggesting that some “athletes and soldiers given a diagnosis of amyotrophic lateral sclerosis…might have been catalyzed by injuries only now becoming understood: concussions and other brain trauma.”

To be clear – and please don’t anyone miss or miscontrue this point – this is an important and fascinating area of research.

But the story did not exhibit the best of health/medical/science journalism.

1. It was based on a study of 3 people. (The ALS Association says there are up to 30,000 people in the US living with ALS.)

2. It stated, “Lou Gehrig might not have had Lou Gehrig’s disease.” (No evidence for this was provided. He also may not have been a great left-handed hitter. That may have been an optical illusion.)

3. It said this could “perhaps lead toward new pathways for a cure.” (After a suggestive finding in just three people?)

4. The story later says, “The finding’s relevance to Gehrig is less clear.” (Hedging already after a bold earlier statement in the story.)

5. But just a few paragraphs later, the story says, “The new finding…suggests that Gehrig might not have had (ALS).” (Head spinning yet?)

5. The story dropped lots of big names – Gehrig, Stephen Hawking, Michael J. Fox, former NFL players Wally Hilgenberg and Eric Scoggins, Cal Ripken – in a jumble of claims, associations – or was it just plain name-dropping in order to make the story more appealing?

6. The story brought in “recent epidemiological studies” in soccer players and soldiers without one word about the possible limitations of such studies.

7. It went into detail that a historian or sports nut would love about Gehrig’s football concussions or baseball beanings or fights with Ty Cobb. But all of this just fed the theory that was not supported by anything but guesswork and innuendo.

The story ends with a quote from a Gehrig biographer:

“Lou Gehrig wanted to know everything possible about his own illness — he got to know his doctors, talked with scientists with obscure approaches, and volunteered himself as a guinea pig to find any way to combat the disease. He wouldn’t stick in the sand and not want to hear about this. If he were around today, he would continue to have that same curiosity, and that burning desire, to help his situation, or to help others.”

As we said earlier, this is important and fascinating research. So we don’t think anyone should stick their head in the sand over this research either. But the story also didn’t require any hype – the kind it received from the NYT.

Additional thoughts from Dr. Steven Atlas of Massachusetts General Hospital, one of our medical editors:

“This represents a small and interesting case series. The lowest rung on the clinical evidence ladder. It is a pretty big stretch to imply that Lou Gehrig may not have had ALS. To imply that one would need to know how common this is. One line of evidence is that NFL players may be more likely to be diagnosed with ALS than the general public. But it is also possible that given their occupational history, one may look for it more carefully. Another way would be to do a case control study. One could take individuals diagnosed with ALS and maybe age and sex matched controls to see if there is a history of prior brain trauma. For pathologists, one method would be to work to do postmortem exams on more patients with ALS to see if they had the pathological changes of ALS or recurrent brain trauma. One could independently get history of prior brain trauma to see if history and pathology line up. The bottom line as you mention is that this is an intriguing study. It is doubtful that such a study may lead to a “cure” unless one means that we seek to decrease brain trauma in the first place. As the article mentions well into it, we won’t know whether Gehrig has ALS or not, but one can’t help but surmise that he did have ALS until data shows that much of ALS is in fact a side effect of brain trauma. Finally, even if brain trauma is associated, it is possible that genetic factors that would lead to ALS are present in these individuals with brain trauma. Specifically, is it the severity of the brain trauma that predicts this? Or is it the genetics that dominate and the trauma is the straw that broke the camels back?”

Complexities that, despite the long word count, this story didn’t address.


Addendum on August 18:

See Neurocritic blog post:
“Lou Gehrig Probably Died of Lou Gehrig’s Disease.”

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Comments (6)

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Gary Thaden

August 17, 2010 at 2:56 pm

Minnesota Public Radio blog (Bob Collins News Cut) just posted on this article. I left a cross reference to you blog under comments. http://minnesota.publicradio.org/collections/special/columns/news_cut/archive/2010/08/what_killed_lou_gehrig.shtml

MJSamuelson

August 17, 2010 at 9:37 pm

Too little is known or understood about the disease for this kind of unfounded conjecture. One good thing, though – it gets people talking. I wish more people had anything approaching Gehrig’s curiosity, but as this article seems to suggest, the lack of understanding about ALS leaves a lot of guesswork and innuendo unchecked.
I hope that your piece here, and the buzz you’re getting, are enough to combat the malaise and acceptance a story like this could create. People like my mother and my grandmother, both of whom suffered from ALS, deserve a lot better than the NYT’s unfounded and poorly researched conjecture.

Elaine Schattner, M.D.

August 18, 2010 at 2:36 pm

As a newsreader and patient, I agree – the Times exaggerated this medical “news” which is based on observations in a few patients. I don’t know why the story was highlighted on the front page of today’s print edition.
But as a doctor I did find the story interesting, and learned from it. In medical parlance, it’s a small case series about some unexpected pathology in patients with a neurological conditions that mimicked ALS.
Trying to look at the bright side:
1. I don’t usually read the sports section, and this story took me there as I continued reading. (not very important)
2. The story points to the need for careful diagnosis by qualified physicians, pathologists, geneticists, etc, as an underpinning to evidence-based medicine. (very important)
If we’re going to test any new drugs in clinical trials, we need to know what the patients have before we can draw conclusions about the effects of the new agents. This would apply to trials in oncology (such as the effectiveness of a new drug for BC) in neurology (the recent Alzheimer’s story of obvious relevance) and in pretty much all fields of medicine. Even for something so straightforward as hypertension, before you do a trial on a drug’s effectiveness, you need to know for sure that the patients in the study really have it.