UK PACE Study Highly Misleading
I've sent the message below to some journalists. Please feel free to send this message on to anyone else you know, journalists, doctors, whomever. It is extremely important that we do our best to counteract this highly misleading study that has just been published in the UK. It will have a negative impact on us all.
Dear -------,
Today the Lancet has published a study regarding "Chronic Fatigue Syndrome" which is highly misleading. I would very much appreciate your taking the time to read the following press releases and publishing a piece in ------- that gives accurate information about the problems with the PACE study.
Patient groups all over the world are aghast at this new study - we all know from personal experience (as I assure you I do) that exercise makes the condition far worse. This study will literally endanger the lives of millions - especially vulnerable children who are unable to speak up for themselves if forced to exercise beyond their capacity.
This is the link to the Lancet publication: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
It is crucial to note that the participants in the study were: "patients meeting Oxford criteria for chronic fatigue syndrome".
However the Oxford criteria are so vague as to include almost anyone who feels "tired" and do NOT account for people with the neurological illness M.E. as identified by the WHO and the more commonly accepted Canadian Consensus Criteria (available here: http://sacfs.asn.au/news/2010/08/08_13_canadian_consensus_case_definition_revisited.htm)
Please see the statement from the ME Association in response to the study:
http://www.meassociation.org.uk/?p=4607
And the statement by Professor Malcolm Hooper:
http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm
This press release from the ME/CFS Worldwide Patient Alliance also came out today:
http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf
This is how the NY Times has reported on the study:
http://www.nytimes.com/2011/02/18/health/research/18fatigue.html?_r=3
I also recommend watching this trailer for an upcoming film about M.E.:
http://www.youtube.com/watch?v=JzcjVVQk5UM&feature=youtu.be
Please let me know if you have any questions. Thank you very much indeed.
