I got asked to look over an e-mail someone wanted to send to Ted, so am finally forcing myself to sit through this talk. Notes as I got through.
Crawley TedX01
This Tedx video is hilarious. Who told her to speak like that? LOL at her facial expressions too... it's like badly done pantomime.
3:00- "We're making progress. 10 years ago people said to me that it didn't exist in primary school children."
Who said that? What would that mean? That no primary school children suffered from disabling fatigue for more that six months that could not be accounted for by an exclusionary diagnosis?
LOL again at the expressions.
re the stuff (3:30-4:00) about the severity of infection being more important that the sort of infection for triggering CFS in children: I don't remember the research on this. Anyone know what she's referring to there?
LOL what's she doing with her hands now? This so looks like she got 20 minutes with a rubbish body language expert, and did a bad job of following bad advice.
7:00 - "And if we do that we can increase a child's chance of recovery from less than 10% to more than 60%. A six fold increase." ... "But I don't think that it's good enough that 40% of teenagers are still ill after six months."
Crawley TedX02
0:44 - "I couldn't put a picture of a patient up today, because I was really worried about them being attacked, like I am attacked. It is the nature of doing research into Chronic Fatigue Syndrome, it is the research environment. Medical students are told not to go into this area. Researchers are told not to do research. Researchers who do research leave. This is an e-mail that I got a few years ago. It was used on the front cover of the Sunday Times, to discuss the research environment for Chronic Fatigue Syndrome. I still laugh at the idea that someone was going to cut my balls off. Does make you wonder."
2:50 - There's a rather misleading description of the controversy around SMILE here, but I don't have time to transcribe now. Then moves on to talking about anti-vaccination people sending "specific, personalised death-threats" (as opposed to the mere anger she has to try to spin as death threats?)
7:05 - "We need to do that because those with Chronic Fatigue Syndrome, particularly children with Chronic Fatigue Syndrome, don't have a voice. They're too ill. So we need to be their voice."
By the end of that, I wasn't finding it funny, no matter how ridiculous her expressions were. What an appalling piece of propaganda. Has anyone from the ME Association or Action for ME commented on this? How can Action for ME think that it is acceptable to continue to try to get funding for MEGA when it Is being run by Crawley?
The bit about 'her' e-mail is clearly BS. I don't see how TedX can defend releasing this video if they've been informed of how she has misrepresented things.
From Mat Gill, the creator of that Sunday Times Magazine cover (via
@JohnTheJack )
"This is a photo illustration I created for an article that was published in The Sunday Times Magazine in 2013.
I created it using the wording from threats Simon Wessely had received at the time (it certainly is disturbing!)
Prof Crawley contacted me asking if she could use the image in her presentations. I gave her permission in good faith.
I’ve read your tweets and responses about Prof Crawley’s presentation (I had a quick google when your email arrived). I was a bit concerned about how she presented the image - the context of the image is clearly important and not disclosed! Ive dropped her an email asking her to be clear in her presentations that the image was an illustration published in the ST Magazine."
re her claims on recovery, this is from the TedX requirements for scientific claims:
"• Be backed up by experiments that have generated enough data to convince other experts of its legitimacy."
For the recovery claims, presumably that's a reference to FITNET? There are problems with that study, and it's just one study.
re SMILE, she kept things vaguer, but that would seem to fall closer to outright pseudoscience:
http://storage.ted.com/tedx/manuals/tedx_content_guidelines.pdf
Ted say: "One of my speakers broke these rules. Now what? If you suspect that a speaker at your event veered outside these guidelines, let us know about it. We will review the content together and make a decision about how to proceed. We may place an overlay on the video in YouTube alerting viewers that the content is outside TED’s standards. Alternatively, if the talk raises issues worthy of a broader debate we may move the talk off of YouTube and onto our own site, where we can provide more context and offer a broad array of conversation tools. And, in extreme cases, we reserve the right to remove the video altogether."
I think that there's good reason for TedX to pull this presentation, and if Crawley can't even fulfil their lax criteria for accuracy, that's really not a good sign for her.
:emoji_guardsman: but given I seem to be being cross questioned 
I kind of assumed it was from a positon of having seen the actual offending article. And very 'offending' it is, I grant you! 
