Occasional thoughts on life with too few spoons. Leeds, UK based. Welcome!
The name ‘Spoonseeker’ drives from ‘Spoon Theory’, which is a clever way of explaining what it feels like to live with very limited reserves of energy. I myself have M.E. (Myalgic Encephalomyelitis). Spoon Theory was devised by someone who suffers from Lupus, but it is equally relevant to both – and indeed many other – chronic health conditions. You can read the original article about Spoon Theory here.
spoonseekerdotcom 
I shared your recent article on Crawley’s research, on the Voices from the Shadows Facebook page, and some one asked about your figure of 3.6 million funding. Could you fill me in on how you reached that shockingly large figure. Thanks for your very measured article.
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Thanks for sharing my post, Natalie. The £3.6 million figure comes from the poster I shared in the article. I don’t seem to be able to paste in an image here so please refer to the article itself (near the end). You will see that they boast of over £3.6 million worth of funding over 6 years, apparently spilt between six projects, including Magenta which has been described as a PACE trial for children – or at least the feasibility stage for one. Also planned is a study into treatment for the severely affected. Such treatment is very much needed of course, but I am very concerned that such a trial is to be carried out by someone who doesn’t seem to grasp the difference between ME and ‘chronic fatigue’. I notice that the Smile project doesn’t appear in the list. This was the especially controversial trial which was to test the Lightning Process on children. I’m not sure if it’s still going ahead. I heard that she was finding it hard to recruit enough subjects. Hopefully the parents have had more sense than to put their children forward. Here’s a link to some info on Magenta: http://public.ukcrn.org.uk/search/StudyDetail.aspx?StudyID=19035 I see she uses her 2% prevalence figure.
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I just came across this http://trialsjournal.biomedcentral.com/articles/10.1186/1745-6215-14-415
The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study)
Esther CrawleyEmail author, Nicola Mills, Lucy Beasant, Debbie Johnson, Simon M Collin, Zuzana Deans, Kate White and Alan Montgomery
Trials201314:415
DOI: 10.1186/1745-6215-14-415© Crawley et al.; licensee BioMed Central Ltd. 2013
Received: 14 September 2012Accepted: 12 November 2013Published: 5 December 2013
Did it go on to a further study? not just feasibility?
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Hi Natalie – As far as I know there was another study but I’m still trying to find out what happened with it. I heard that it wasn’t successful but I’m not sure how exactly. I hope to get back to you about it.
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Urgent
Spoonseeker, are you awarae of the following development re EC? is written up on Phoenix rising-18th May- a day with the MUPPETS- http://forums.phoenixrising.me/index.php?threads/esther-crawley-18th-may-2017-a-day-with-the-mupp-ets-and-more.51518/
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Hi – I had already seen this but thanks for checking with me. I seem to be on sabbatical from blogging at the moment but I’m still active on Twitter and I tweeted about the appalling ‘muppet’ conference as follows:
How many levels of wrong can you see in this program?
MUS (medially unexplained symptoms) is a suspect diagnosis at best
ME is a neurological condition, not MUS
Prof Crawley is not an expert in ‘what we know about CFS/ME’
Health professionals should not be calling their paediatric (or any) patients ‘muppets’.
For anyone else reading who hasn’t seen it, the program for this one day conference can be accessed via a link on the PR thread which ruralres1 supplied above, Of course we don’t know that Prof Crawley had any involvement in coming up with the title of the meeting but it has been pointed out that it fits in with her liking for snappy acronyms such as Fitnet, Smile and Magenta. As I write this, it has just been announced that ME Research UK has quit the CMRC. They don’t give any specific reasonn but it seems likely they have responded to patient concerns, especially following the recent interchange between David Tuller and Stepehn Holgate. And – who knows? – the ‘muppets’ may have played their part…
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