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
I think this study is a terrible thing.
Children are very vulnerable because they will accept what adults tell them over their own experiences. If they are told they are not ill they will believe that no matter how they feel.
Children think everything is their fault. Think of how many children believe their parents divorce because of something they have done.
LP is cultish and indoctrinating and the damage this will do to a child's psyche never mind their bodies appals me.
Evaluation of the Lightning Process with children to start. Run by Esther Crawley.
Not sure if good news or not. Prob not.
http://www.afme.org.uk/res/img/resources/RCT on LP March 2.pdf
First question is who gets what out of the 164k. Is Phil Parker doing it for nothing? Is he delighted to be collaborating, or delighted to be contracted?
Second, what's the objective of the study? "to to investigate whether it is possible to recruit to a randomised controlled trial studying how the Lightning Process compares with specialised medical care in the treatment of childhood ME/CFS." Anybody understand that? So, the first study works out whether it's possible to recruit to a trial - whatever that means. I guess you have to make this woolly to get the dosh, otherwise somebody might expose it for what it is.
Third, the pilot study gets 164k, and might be followed up by a larger study, which presumably gets more. I thought not much went into ME research? Or is this LP research?
Later on the objective is stated as " to investigate whether it is possible to look at two different approaches to the intervention and treatment of Chronic Fatigue Syndrome/ME (CFS/ME) in Children."
I could save them 164k - yes, it's possible to look at two different approaches: put one here, then put one over there; look at the one here, then turn your head and look at the one over there.
OK, this is a press release, and hopefully the project will be managed by a project manager and not a journalist.
"there is a limited evidence-base for treatment for children with CFS/ME." OK, so lets pull the Lightning Process out of thin air and see if that helps us understand it.....,,"We hope that our research will enable us to understand more about this condition and how we can help those children who suffer with it.”....and there it is!!! There are obviously some great minds involved in this.
"The study will involve in-depth interviews with the patients and their parents, and the primary outcome measure will be school attendance after six-months." I predict that the LP will come out with a very good score - tell the kids to ignore the fact that they feel crap for the first 6 months, and get their arses into school. No measure of what this does medium to longer term, or wether it benefits the kids.
Esther Crawley, welcome to the kingdom of Endland, we look forward to providing input to this project.
Fingers of Endland