Esther Crawley TEDxBristol Disrupting Your View Of ME

[char47]

Please Please someone who knows David Tuller ask him to do a TED talk to counter this utter BS

 

[Marky90]

They may be counting Alan Bec as their counter speaker.
https://tedxbristol.com/speakers

That is literally the dumbest recovery story I have ever seen. No way we have the same disease.. Healing cfs with "disruptive numbers".. God help us all what is this nonsense.

 

[Marky90]

I mean, this TED-show would make a good episode of South Park. That`s how deranged it is

 

[markielock]

@Marky90 I held off making a comment on Alec's talk simply because I really couldn't understand what the hell his synopsis was on about. He either means: instead of words, show them the numbers from tests etc. OR to absorb numbers into our brain to heal us lol. It does sound an awful lot like the latter and if it is: then how the hell are these people getting so much more public face time than other people? Do they just have a better marketing team with a nefarious agenda? lol It just feels like a conspiracy to undermine ME/CFS by leading its funding for research in an intentionally wrong direction.

 

[aimossy]

Will the charities be able to let this latest unethical behaviour regarding EC at #scidata17 and TEDx slide and continue to associate with EC - or will they now have to take a stand?

 

[Marky90]

@Marky90 I held off making a comment on Alec's talk simply because I really couldn't understand what the hell his synopsis was on about. He either means: instead of words, show them the numbers from tests etc. OR to absorb numbers into our brain to heal us lol. It does sound an awful lot like the latter and if it is: then how the hell are these people getting so much more public face time than other people? Do they just have a better marketing team with a nefarious agenda? lol It just feels like a conspiracy to undermine ME/CFS by leading its funding for research in an intentionally wrong direction.

I know right.. I think it`s three main factors here..

1. Money
2. Stupidity
3. Narcissism

Personally I aborted my psych bachelor because of all the bad research. Making articles and papers seemed to be more about spinning incomprehensible premises in a nice package of references and open ends. It didn`t fit right with me, and even our professors` research was usually some horrendous baloney. It kinda makes sense that some gullible people end up believing their own bs

 

[markielock]

@Marky90 I did a bit of digging and found his website with a video on what his thing is about: http://www.realitycheckconsultancy.com/wib/

Essentially it's a badge you wear with a number you can change between 1-10 that describes your emotional, physical or mental capacity/well-being/energy levels so you don't have to communicate it with words or other actions.

No idea about the research backing it, it's not very upfront with all of that as far as I can tell.

Not really my cup of tea but yeah, according to the video it's working for some people

 

[Marky90]

@Marky90 I did a bit of digging and found his website with a video on what his thing is about: http://www.realitycheckconsultancy.com/wib/

Essentially it's a badge you wear with a number you can change between 1-10 that describes your emotional, physical or mental capacity/well-being/energy levels so you don't have to communicate it with words or other actions.

No idea about the research backing it, it's not very upfront with all of that as far as I can tell.

Not really my cup of tea but yeah, according to the video it's working for some people

Looks like the name of the website suggests what should be the next step in their life

 

[Large Donner]

I'm fully expecting Crawley to get a full TED talk and burst into song...."I believe the children are the future.....

 

[Jenny TipsforME]

It does say on their Web page are you interested in becoming a speaker I wonder if there is anyone with good public speaking skills who could do a talk from the patients perspective and counter Crawley's story?

@Jenny TipsforME your in the Bristol area, have you got any ideas on this?

I’m definitely not up to it myself. Still in bed from just going to see Unrest at the weekend

I’ll have a think but won’t the schedule for this event be fixed by now?

Jen Brea is a TED fellow...Sure she won't be very happy at this....

@Jenny TipsforME thought you should know...

I think someone else quoted Jen’s take is to ignore it and not give it our attention. The internet is amazing for ME advocacy but one flaw is lack of distinction between good and bad responses. If we all watch it online it makes it seem credible. So when it does come online another suggestion is just one person watch it and then write it up for the rest of us. Keep discussion of it and view count low.

We could try a SMC favourite of announcing unrelated M.E. news on the same week, that sort of undermines the other news without adding publicity to the thing you’re counteracting

Can’t think of what though. Are we expecting any new research? A new layer to Unrest news?

Just a quick thought, maybe we could buy up as many of the tickets as possible, fill our seats with empty shoes and information on Crawley and ME to counter her narrative, so that she hardly has any audience to preach too, just rows of empty shoes on empty seats

We could simply just buy up the tickets and leave it at that?

Oh just checked prices: £58.05 to £106.42 incl. booking fee

I doubt pwme can buy up seats at that price. You don’t pay for the individual talk it’s the whole event.

 

[char47]

The more i think about this the more utterly perverse it is. Having EC to do a talk with the purpose of disrupting people's view of ME is like having Nigel Farage do a talk disrupting people's view of immigrants. - She is CONFIRMING the common view, the usual view of the gen pub & med prof, not 'disrupting' it, it's bizarre.

It's like the slightest bit of publicity or progress on the biomedical view of our disease, countering (in the most comparatively minor way) the BPS view, & all of a sudden the biomed view is presented as if it's the common idea which needs to be 'disrupted'. Man they need to live in reality!

 

[NelliePledge]

@Marky90 I did a bit of digging and found his website with a video on what his thing is about: http://www.realitycheckconsultancy.com/wib/

Essentially it's a badge you wear with a number you can change between 1-10 that describes your emotional, physical or mental capacity/well-being/energy levels so you don't have to communicate it with words or other actions.

No idea about the research backing it, it's not very upfront with all of that as far as I can tell.

Not really my cup of tea but yeah, according to the video it's working for some people

Don't see how you can trademark a badge with a number on it

 

[Alvin2]

So the liar is the one being persecuted not the victims [facepalm]

 

[RuthT]

I almost immediately emailed Bristol TEDX to say EC is not a disrupter, but the dominant figure in the field, and asked for an alternative speaker & suggested Jen.

Suggest that during the talk we RT Jen’s TED talk & tweet about Unrest & the science we want, w the BristolTedx hashtag so this is what features on their feed: positive stories about ppl w mecfs, contradicting the EC narrative but not directly engaging with it. This would no doubt be in addition to those who will engage directly. Someone digested a thunderclap - would be interested to know if this has been tried before.

 

[JamBob]

Suggest that during the talk we RT Jen’s TED talk & tweet about Unrest & the science we want, w the BristolTedx hashtag so this is what features on their feed: positive stories about ppl w mecfs, contradicting the EC narrative but not directly engaging with it. This would no doubt be in addition to those who will engage directly. Someone digested a thunderclap - would be interested to know if this has been tried before.

Seems like the best bet. To be honest I don't think these local TEDx talks get that much attention - someone I know did one a few years ago and it's only got 500 views on YouTube.

Maybe if we adopt Jen's strategy of "ignore, ignore, ignore" the talk won't get any publicity. The only thing that could go wrong is if the Science Media Centre or some other Skeptic types start promoting it on Twitter.

 

[Alvin2]

Seems like the best bet. To be honest I don't think these local TEDx talks get that much attention - someone I know did one a few years ago and it's only got 500 views on YouTube.

Maybe if we adopt Jen's strategy of "ignore, ignore, ignore" the talk won't get any publicity. The only thing that could go wrong is if the Science Media Centre or some other Skeptic types start promoting it on Twitter.

Ignoring lies does not make them go away, just ask Hillary Clinton. People actually start believing them when its repeated millions of times. I agree with not calling attention to it as long as its obscure but if it gets out there i would strongly rebuke it

 

[RuthT]

I almost immediately emailed Bristol TEDX to say EC is not a disrupter, but the dominant figure in the field, and asked for an alternative speaker & suggested Jen.

Suggest that during the talk we RT Jen’s TED talk & tweet about Unrest & the science we want, w the BristolTedx hashtag so this is what features on their feed: positive stories about ppl w mecfs, contradicting the EC narrative but not directly engaging with it. This would no doubt be in addition to those who will engage directly. Someone digested a thunderclap - would be interested to know if this has been tried before.

*suggested* not digested a thunderclap - would definitely give indigestion! Thanks autocorrect...

 

[halcyon]

Ignoring lies does not make them go away, just ask Hillary Clinton. People actually start believing them when its repeated millions of times. I agree with not calling attention to it as long as its obscure but if it gets out there i would strongly rebuke it

I'd say it's too late, she has already succeeded in pushing her narrative into the mainstream, and she has done measurable damage. It's only going to get worse and it seems to me that her "poor me" public speaking appearances are becoming more frequent. She needs to be deplatformed. Yes, this plays right into her narrative, but who cares. We have the benefit of solid biomedical research behind us, she is standing on a house of cards model that is on the verge of crumbling. She will be on the wrong side of history. I say that we need to stand up and fight back and soon enough we will be remembered as brave patients who stood up for good science.

 

[Yogi]

Esther Crawley is not a "disrupter". She is the establishment and has received the most money along with Peter White for research from UK taxpayers and some charities. She was on the GDG of NICE (CG53) in 2007.

@JenB and MEAction are the disrupters of this misleading and false narrative by disrupting the BPS narrative, PACE trial and the flawed NICE guidelines.

I suspected that SMC and the BPS school may try to use the publicity of Unrest to paint themselves as the victims and the advocates for people with ME. My fear has come true.

It is laughable that TED are damaging their brand with her talk.

I expect further appropriation and exploitation of the MEAction campaign by the pscyhs and Crawley, White, Wessely et al to get more funding for their BPS research by painting themselves as biomedical researchers. This happened in 2002 after the CMO report and RAG. We need to be aware and alert of this.

 

[Yogi]

https://twitter.com/i/web/status/923648198102700033