The #MEAction Network
November 30 at 8:38pm · Edited ·
Several ME patients from the Science & Treatment Policy and the Media Working Group helped draft this new document which debunks the myth of the "ME militant" and the "vociferous minority" as it relates to our massive, community opposition to the PACE trial.
We hope it provides an easy way to correct journalists and others on social media with facts whenever this myth comes up again.
Let us know what you think of this document (and if you see any typos!) We'd love your feedback.
NOTE: please don't download but feel free to distribute the link – we will likely update the document in response to any feedback.
Come help us work! See all issue groups:http://my.meaction.net/local_chapter_collections/15
Not sure that's any different.
Drafted collectively by several members of #MEAction. November 30, 2015. Last updated: November 30, 2015
Initially I couldn't think what "the failure to report objective measures included in the original trial design in favor of reporting subjective outcome measures" could refer to but the initial plan involved using actometers to see how much activity were doing but this was dropped.
It seems quite likely that when it was approved for funding by the MRC and other bodies actometers were planned as they seems to have been dropped when an ethics committee said they had a lot of outcome measures which in total might be a burden for participants (I think more questionnaires were added by the investigators at around this stage). As I understand it, the ethics committee didn't tell them to drop actometers specifically. Also I recall somebody in the know telling me at the end of 2003 or early 2004 that it contained actometers. This was after MRC approval.