WSJ on PACE data

[Seanko]

ICYMI the Wall Street Journal published an article on open data with reference to the PACE ME/CFS study data
http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712
Patients, Scientists Fight Over Research-Data Access

Some scientists balk at disclosing details in study of chronic fatigue syndrome

The debate recently boiled over regarding the long-running study in the United Kingdom of ME/CFS, a debilitating and poorly understood condition also known as myalgic encephalomyelitis or chronic fatigue syndrome. The study found that either a program of gradually increasing exercise, or cognitive behavioral therapy, led to modest improvements in patients’ fatigue and physical functioning compared with standard medical treatment, which consists mainly of educating patients about the condition and treating symptoms such as pain. The study, which is commonly known as Pace and involved 640 chronic fatigue patients, was first published in the journal the Lancet in 2011.

Some patients and other scientists have doubted the study’s conclusions. “These theories presume and insist that patients are not medically sick but simply suffering from dysfunctional cognitions that need to be changed,” said David Tuller, a lecturer in public health and journalism at the University of California, Berkeley. Dr. Tuller wrote an extensive analysis describing methodological problems with the Pace study that ran in October in “Virology Blog,” a widely read scientific blog.

There are contributions from Tom Kindlon, James Coyne, & James Horton (Lancet editor in chief)

 

[Seanko]

As Tom Kindlon put it, "It could have been better, could have been worse.."

Main thing is that it was published in a leading newspaper. Will have a chat with people in UK about getting story covered objectively here.

 

[Cort]

It's too bad that the article didn't list the possible problems with the study... it would have just taken a paragraph but the comments section fills them in...All in all the article plants a doubt about the PACE findings and CBT and that in itself is good.