Tuesday, June 19, 2012

OK, it's been a long time, but a group of us have now completed a fuller analysis of the PACE trial. You can find it at

There is also an introductory Youtube video at

It may have taken a while, but last year's PACE publication was only meant to be the first part. There is still no word about when the rest of the analysis will be available, and the authors are resisting requests to release the data for others to analyse, despite the fact that we all paid for it. We still do not have any data on whether any of the patients managed to sustain a return to full or part-time work.

Last year, Richard Horton of The Lancet issued a challenge to patient groups to engage in a proper discussion of the PACE trial, but although we contacted him on 15th May this year, and the assistant editor on the 25th, neither has replied. I wonder what he had in mind when he invited us to engage in discussion? Perhaps we need to qualify as doctors first.

However, Janelle spoke at the CFSAC meeting last week, and introduced our analysis there. Phoenix Rising are hosting the site and members contributed greatly to its production, and we are continuing to try to have our findings recognised.

If you have any suggestions, or would like to spread the word, please feel free to contact me via the website.