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Law and health; due process and civil society - PACE vs FOIA: Access Denied April 9, 2014


Senior Member
Cornwall England
April 9, 2014

PACE vs FOIA: Access Denied

by Valerie Eliot-Smith

This may not sound like a very sexy topic – but if you keep reading, you might be pleasantly surprised. It might even merit a minor geek-alert – but geeks can be good for your health in unexpected ways.


Anyone who is following the efforts of many patients/advocates from the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome community (ME/CFS - estimated 20m patients worldwide) to extract the full data from the controversial PACE trial is likely to find this post of interest, plus anyone who cares about open access to the vast store of information held by states and their subsidiary bodies.

And those of you who manage to read the whole post might might even conclude that some public authorities believe the word “of” (between “Freedom” and “Information”) is actually spelt “f-r-o-m”.

Moving on: so why is the PACE trial so important? This trial matters because, despite its poor results, the trial investigators have used it to underpin the flawed model of ME/CFS as a psychosocial rather than a medical disorder; its influence extends throughout the world.

The investigators are still refusing (under various guises) to release all the data generated by the trial, (eg. the data on deterioration rates) which are essential for an impartial assessment of the results. This is where access to information becomes a priority.

As I am not a scientist, I asked an acquaintance to review this post for me. This person agreed (although preferred not to be credited) and, in addition, made the following observation:
"The results of the PACE trial were poor. After treatment with cognitive behavioural therapy (CBT) or graded exercise therapy (GET) there were no clinically significant improvements in objectively measured disability, and no significant improvements in employment, or welfare benefit claims. At best, only an additional 11-15% of participants reported a clinically significant improvement in their symptoms when CBT or GET were added to standardised medical care. However, these results were obtained without a placebo control group against which to compare improvements, which the best medical trials are expected to include."
Many ME/CFS patients/advocates believe that, despite the poor results, the trial has been spun in a way which is unrealistically positive and therefore serves the investigators’ own interests in proving their hypothesis to be correct.

This was amply demonstrated in the first article about the trial from The Lancet in March 2011. As Craig Maupin recently observed in the CFS Report Op-Ed of March 2014:

“[M]uch of the scrutiny on the definition of CFS and current efforts of the IOM to revise the definition for CFS, stem from historical and clear evidence that personal attributions played a role in the “evaporation” and “abandonment” of a devastating disease.”

It seems, therefore, that every generation produces another batch of psychiatric converts who retain control of the radio station...

Read more: http://valerieeliotsmith.wordpress.com/2014/04/09/pace-vs-foia-access-denied/

Additional spacing/formatting my own.

Roy S

former DC ME/CFS lobbyist
Illinois, USA

Methinks she has a way with words.

"I know that many people may be unable to read much further than this (or may
have lost the will to live already) so my final comment is this: information is
arguably our most valuable tool in bringing about change for the abuse and
neglect of ME/CFS patients which spans more than half a century."