This week, an investigative journalist David Tuller published his articles on PACE trial (Trial by Error first, second, last), exposing the flaws from one of the most influential clinical study for CFS. Cort Johnson’s blog does an excellent job at summarizing lengthy articles published over three days, so I won’t go into the problems of PACE trials and what the articles revealed. Instead, I would like to share my quick experience with PACE trial.
When I was hospitalized in May, I had to deal with team physicians who had no idea about ME. It was frustrating to have to explain that I had this serious disease that they had no clue about, and the acute exacerbation could have a long term consequences. The resident doctor on my team went home and did some “research”. Of course, what she read was the PACE trial.
Because of what she read from one of the most prestigious medical journals, she trusted what she read over my words as a patient, and genuinely believed she was helping me by “encouraging” me to move, which eventually resulted in the walk. I am still recovering from the events in May, and even with steady improvements, I am nowhere close to how well I was earlier this year.
As a scientist myself, it is troubling to think anyone involved in research would knowingly commit such flaws revealed in Tuller’s report. If I did my research with the moral standard shown by the PACE team, I would have finished my Ph.D. before ME pulled me out, or at the very least, published the project I was working on after working on it for a year or two instead of thriving for the best science I could produce.
It is great to see the comments from well-known researchers and clinicians included in the report. A random physician might not trust my words as a patient, but they would certainly trust their opinions.
I was not forced to enter CBT or GET, but this flawed study still had real, dangerous influence on my health. The fame of the journal that the study was published in means that anything short of retracting the study is inadequate for the safety of future patient care. I thank Dr. David Tuller for opening the door for that necessary step, and hope the Lancet would take these revealed flaws seriously to launch an independent investigation.