NYT 12OCT09: Is a Virus the Cause of CFS?

[Aftermath]

Today, the New York Times published a thorough follow up article on the possible link between XMRV and CFS entitled "Is a Virus the Cause of Chronic Fatigue Syndrome?"

Someone--preferably someone from an organization with status (e.g. the CFIDS Association)--should write a letter to the editor slamming Dr. Reeves and the bias he admitted in this interview. The completely flawed definition that he and the rest of the folks at CDC are using should also be explained.

 

[MEKoan]

Just want to post the Reeves portion

QUOTE:
"The study received a mixed review from Dr. William C. Reeves, who directs public health research on the syndrome at the Centers for Disease Control and Prevention. He called the research exciting but preliminary, and said he was surprised that a prestigious journal like Science had published it, because the researchers did not state the ages or sex of the patients and controls, or describe the duration of the illness or how it came on.

If I dont know the nature of the cases and controls, I cant interpret the findings, Dr. Reeves said.

We and others are looking at our own specimens and trying to confirm it, he said, adding, If we validate it, great. My expectation is that we will not.

He noted that there had been false starts before, including a study in the 1990s linking the syndrome to another retrovirus, which could not be confirmed by later research.

Many patients and a community of doctors and researchers who specialize in the syndrome take issue with the disease centers approach to the illness and the way it defines who is affected. They claim that the C.D.C. includes people whose problems are purely psychiatric, muddying the water and confounding efforts to find a physical cause. "

END QUOTE

It's a good sign that the author of the piece included the criticism of the CDC methods. This awareness seems new to me.

 

[MEKoan]

You know, it seems to me that if Reeves attempts to skuttle these research findings by trying to replicate them with his own totally wonky cohort, it will simply demonstrate that his flawed methods have been an obstacle to research low these many years.

Doesn't it?

I would be so surprised if WPI were not prepared for this. I bet they are.

koan

 

[Finch]

While Dr. Reeves's statements are quite ominous, and I believe he is set on disproving XMRV as a causal factor in ME/CFS in order to further his agenda no matter the cost to those with ME/CFS, it is good to see the paragraph stating that there are many who take issue with the current CDC case definition, although not stated exactly in those words.

This is a very well-done article. The reporter has done a good job, and it will be widely read.

Aftermath, you're absolutely correct. I hope someone 'of substance' does write a letter to the editor - and quickly - to further explain the specific issues that patients, advocates, and researchers have with Dr. Reeves. If anyone sees such a letter, please post!

 

[hvs]

I agree that he's determined to fail to replicate the results.

But I'm wondering if anyone's seen another high-profile publication describe knowledgeable CFS doctors' dubiousness about the CDC on this?

I can't.

 

[Advocate]

Please write to the New York Times

(I'm not clear about whether I have to use the same subject line as others in this string, or whether I can write my own title. Administrator?)

It might help if the New York Times got thousands of letters in response to the story in today's paper, Is a Virus the Cause of Fatigue Syndrome?.

In each of the above posts I see a few lines or words that would make very good letters. They wouldn't even have to be good letters. Whatever words are used, it would let them know that people are interested.

I once sent two letters to the NYT on another subject, and one was published. I was amazed.

Letters to the Editor: The URL is <letters@nytimes.com>

Sue B.

 

[anne]

Agreed. I've written mine, too. The stories are on the "most viewed" list already. Getting a lot of reader mail will show that there's interest in the story.

 

[kamina]

Major props to the NYT for writing such a balanced piece.