For the sake of completeness, Heather Walker, Communications Manager, Action for M.E. put the following out on Co-Cure, on 5 March in response to an earlier Co-Cure mailing:
----- Original Message -----
From: "Heather Walker <Heather.Walker@afme.org.uk> [via Co-Cure Moderators <email@example.com>]" <auntiem6@PTD.NET>
Sent: Friday, March 05, 2010 2:04 AM
Subject: [CO-CURE] MED:NOT:ACT: IS UK CFS Charity Action for ME involved in RCT of LP? - response
[Moderator's note: responses are not normally allowed on Co-Cure, but
given the question raised in the original message, we think this reply
must be posted. However, there will be no further discussion.]
I am afraid you are mistaken Ciaran. We have done no PR for this. The press release was issued by the RNHRD Foundation Trust, not Action for M.E.
All Action for ME has done is report the news as an item on twitter - www.twitter.com/actionforme
. In order to post a link to the press release, we have saved it to an internal resources section on our website and may link to it via our Daily Press Summary as and when any press clippings in.
Our policy remains unchanged when it comes to therapies which claim to offer a cure, have not been subject to research published in respected peer-reviewed journals and/or require the payment of large sums of money. See:
http://www.afme.org.uk/res/img/resources/IA 59 lightning process.pdf
Note that this policy position is of a general nature in respect of "therapies which claim to offer a cure, have not been subject to research published in respected peer-reviewed journals and/or require the payment of large sums of money"
not a position statement on this specific research pilot in children, being led by Dr Esther Crawley.