Friday, 9 September 2016

PACE data: QMUL disclosure under FOI

So Queen Mary University of London is to release the disputed data from the PACE trial to Alem Matthees an ME patient who requested the data under the Freedom of Information Act.

And whilst the international ME community will no doubt be celebrating (I admit I have a some what inane grin on my face just now) it is sobering to think of how far reaching the recommendations for Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) have permeated the knowledge base of our health services.

If (when) the reanalysis of this data shows that these therapies are without merit, there will still be a huge amount of work required to remove GET in particular from the "go to" solutions of doctors, physios and other health care professionals.

However for now, I celebrate.

The real work will no doubt follow.

(Sorry for such a short post, but I couldn't let something like this go by without making a quick comment. :) )

PS Nearly forgot to say Thank You Thank You Thank You Alem!  xx


  1. Short maybe but powerful blog as usual Sally!
    It's a bittersweet day, after the joyous relief that the truth is coming and as we ponder on the wider implications and improvements this will bring to our healthcare, we think too of the unnecessary suffering and damage we've endured as a result of PACE.
    Hopefully, any newly diagnosed ME patients will soon be saved from further damage of being forced into anything as dangerous as GET.
    I'm trying to think of low energy ways on how to celebrate this glorious victory for millions of patients around the globe!

    1. Exciting indeed Joan. I can't wait now to see GET in particular removed from NICE guidelines here.

  2. Someone needs to PAY for having deliberately made the PACE thing happen.

    Follow the money: it was advantageous to just be able to blame patients for not getting better - saved oodles of research money. Someone (many someones) need to be held accountable.

    Sadly, that probably won't happen.

    1. Yes there does seem to be an element of patient blaming in all this push for CBT and GET. As for some-one paying up... can't see it happening.