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Esther Crawley TEDxBristol Disrupting Your View Of ME

Deepwater

Senior Member
Messages
208
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.

Absolutely. With Phil Hammond's recent overtures to Jen Brea, and now their appropriation of the TED platform, it looks as though he and Esther are trying to present themselves as Jen's allies, all bravely trying to help pwME together.
 
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14
I'm posting this as my first post here. I care for my partner full time, who has severe ME/CFS.

This is a copy of an email I've sent to info@tedxbristol.com (hope I didn't make too many errors!), not that I think it'll do any good by the sounds of it!

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Dear TEDx Bristol,

This email is regarding Esther Crawley’s talk on the 2nd November. Forgive the long email, as this is an important subject.

Firstly, this email is not asking for Esther to be denied a platform at TEDx, I don’t believe in such censorship.

However, I also do not believe Esther should be able to make false claims about giving a voice to or representing a group of vulnerable people, when those same vulnerable people are in fact largely campaigning against the harm caused by Esther's physcolognical approach to their illness.

Esther is claiming to be giving a voice to vulnerable ME/CFS sufferers, when many sufferers feel she has helped to stigmatise them

Esther appears to be stating on the TEDx Bristol speaker’s page, that those who oppose her research are a ‘small group of activists’, when in fact a large number of ME/CFS sufferers and medical experts in the field alike object to her purely psychological approach to the treatment of this physical disease, which can have harmful results for ME/CFS sufferers.

Esther Crawley is not a disrupter. She is a part of the establishment that many feel has held back biomedical research into ME/CFS for years, meaning we’re far behind the USA in this area.

In fact, major ME/CFS charities strongly object to Esther's approach, and have publicised the harm that her approach has for ME/CFS sufferers. including children. For example, 'The Young M.E Sufferers Trust' stated that:

"This type of therapy [Esther's FITNET] is known to make people with classic ME deteriorate."

People like Jen Brea of the ‘Unrest’ film (and a TED fellow) are the true disrupters when it comes to ME/CFS.

Esther, on the other hand, has frequently promoted the purely psychological treatment for ME/CFS, instead of the biomedical research that is being campaigned for by many ME/CFS sufferers and leading experts. Esther’s approach consists of CBT & GET (based on the now largely discredited PACE trials after the UK COURTS forced the results to be released), and has been shown to actually cause harm to some ME/CFS sufferers.

ME/CFS sufferers have campaigned for a long time for NICE to change their guidelines (which were also based on the same potentially harmful CBT/GET approach that Esther promotes), and their campaigning has been successful…

NICE have now agreed to review their guidelines on the treatment of ME/CFS.

Whilst I understand TEDx shouldn’t bow down to censorship, I do feel that it is wrong to allow Esther to make false claims that she is representing and giving voice to a very vulnerable group of people, when it’s clear that most of the people she is claiming to represent object to her approach, as do many leading medical experts in the field of ME/CFS.

This is especially important at the moment, whilst NICE review their guidelines for the treatment of this disease, so I urge you to remove or change the wording on the TEDx Bristol speaker’s page that implies Esther Crawley is providing a voice to ME/CFS sufferers (as this is not true, it is only recently she even admitted ME/CFS had a physical cause).

I also feel it would be wholly inappropriate and false for her to be allowed to make such claims during her TEDx talk. I’d go so far as to say it would be an abuse of ME/CFS sufferers to allow her to claim this on stage (and in the resulting YouTube videos), unless challenged by someone who is firmly rooted in the biomedical research of ME/CFS, such as Jonathan Edwards, mentioned below.

So, for the sake of balance, please invite another medical expert in ME/CFS to talk, such as PROF. Jonathan Edwards (https://iris.ucl.ac.uk/iris/browse/profile?upi=JCEDW24 and http://me-pedia.org/wiki/Jonathan_Edwards) who is highly qualified biomedical individual (Emeritus Professor of Connective Tissue Medicine at University College London), an expert in the field of ME/CFS, and does not agree with or follow the now debunked and potentially damaging PACE trials.

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Demepivo

Dolores Abernathy
Messages
411
I'm posting this as my first post here. I care for my partner full time, who has severe ME/CFS.

This is a copy of an email I've sent to info@tedxbristol.com (hope I didn't make too many errors!), not that I think it'll do any good by the sounds of it!

This is a great letter. Thank you for taking the time to write it from everybody in the patient community
 

Wolfiness

Activity Level 0
Messages
482
Location
UK
Hi @Clair&Mike, did you ask @Jonathan Edwards 's permission before volunteering him as "an expert in the field of ME/CFS" or "firmly rooted in the biomedical research of ME/CFS" ?

In journals.sagepub.com/doi/full/10.1177/1359105317700886 he writes "Some years ago I was asked to advise on research strategies for chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), on the grounds of having expertise that might be relevant, although I never practiced in the field." As far as I know he shies away from presenting himself as an expert.
 
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Afraid I didn't and if this is wrong, I must apologize. I honestly thought he was an expert in the field and would make a great opposing and educated viewpoint compared with Esther Crawley, especially as he is leading the effort on things like the Rituximab trial for ME/CFS.

I apologize wholeheartedly if I've made an error in saying what I did though!

Hi @Clair&Mike, did you ask @Jonathan Edwards 's permission before volunteering him as "an expert in the field of ME/CFS" or "firmly rooted in the biomedical research of ME/CFS" ?

In journals.sagepub.com/doi/full/10.1177/1359105317700886 he writes "Some years ago I was asked to advise on research strategies for chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), on the grounds of having expertise that might be relevant, although I never practiced in the field." As far as I know he shies away from presenting himself as an expert.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
@Clair&Mike JE hasn't been involved long and his speciality is RA. He is involved because of his expertise with using rituximab.

We need need another researcher to deliver such a talk....................I bet Dr David Tuller could give a cracking talk and he wouldn't even to change Cawley's title. He has indeed Disrupted the view of ME...........that peddled by EC and her pals that has been accepted by the medical profession and inflicted on patients to their extreme detriment.
 

Yogi

Senior Member
Messages
1,132
I'm posting this as my first post here. I care for my partner full time, who has severe ME/CFS.

This is a copy of an email I've sent to info@tedxbristol.com (hope I didn't make too many errors!), not that I think it'll do any good by the sounds of it!


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Hi Welcome to the forums @Clair&Mike. It's a good letter - people need to call out the lies and smear campaign by EC. Good on you.

It should be a duty of the two national ME charities to defend people with ME but they are "in the tent" with Esther Crawley.
 
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14
I'm sorry @Clair&Mike I didn't mean to attack you, but AFAIK he is retired. I imagine @charles shepherd is on the case though.
Not a problem, it's good to point out if I got something wrong, no offence taken, all good :)

I really do hope/wish they get someone to counter her claims that she is trying to give voice to those with ME, pretty shocked she's saying that - though I guess nothing should be a surprise with these folks! I wonder if there's a slick PR company that's been engaged to help her get more of a platform?
 
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14
@Clair&Mike JE hasn't been involved long and his speciality is RA. He is involved because of his expertise with using rituximab.

We need need another researcher to deliver such a talk....................I bet Dr David Tuller could give a cracking talk and he wouldn't even to change Cawley's title. He has indeed Disrupted the view of ME...........that peddled by EC and her pals that has been accepted by the medical profession and inflicted on patients to their extreme detriment.
Ahhh okay. I thought he'd be a good choice as he was part of the open letter on the PACE trial and recently attended Unrest parliament screening. It sounds like I got it a bit wrong though - Ooops :S

Either way, whoever it is, I just hope a well versed medical practitioner can put across the counter arguments to Esther's 'pitch' about her treatments so people watching the TEDx are not taken in by her pitch!
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Ahhh okay. I thought he'd be a good choice as he was part of the open letter on the PACE trial and recently attended Unrest parliament screening. It sounds like I got it a bit wrong though - Ooops :S

Either way, whoever it is, I just hope a well versed medical practitioner can put across the counter arguments to Esther's 'pitch' about her treatments so people watching the TEDx are not taken in by her pitch!

No, you did not get it wrong and don't be put off @Clair&Mike ! I am very happy to be involved in this sort of capacity. I did not treat ME as a physician but have spent much of the last four years closely involved in the research scene. I have the advantage of not having any vested interest in a particular approach because I am retired and no longer directly involved - which also means I can speak my mind, which most ME physicians and researchers in the UK cannot.
 
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14
HI @Jonathan Edwards - Thanks for replying :)

It's great that you're so willing to 'stand up & be counted' in this way - I feel we need people who are educated & qualified medically, like you, to 'set the record straight' regards Esther, SMILE/FITNET and the use of CBT/GET to treat ME.

I think it's all too easy for the press to just accept what's being pitched by the likes of Esther Crawley, Simon Wessely, and their group, as... let's face it, not all journos are investigative journalists, many just look for a quick source to quote without investigating too deep. So the more people that are available to give an educated opposing viewpoint to what's peddled by the PR department of Wessley's bunch, and the more readily available those people are for the press, the better I think!

I was so horrified to see Esther seemingly claiming to be giving a voice to ME/CFS sufferers, it's like she's trying to ride the tailcoat of the publicity that the Unrest film is generating so that she gains positive exposure for her questionable trials.

Really pleased you replied and it's excellent that you're so willing to be outspoken and stand up for those that need it.

No, you did not get it wrong and don't be put off @Clair&Mike ! I am very happy to be involved in this sort of capacity. I did not treat ME as a physician but have spent much of the last four years closely involved in the research scene. I have the advantage of not having any vested interest in a particular approach because I am retired and no longer directly involved - which also means I can speak my mind, which most ME physicians and researchers in the UK cannot.
 

Yogi

Senior Member
Messages
1,132
HI @Jonathan Edwards -

I was so horrified to see Esther seemingly claiming to be giving a voice to ME/CFS sufferers, it's like she's trying to ride the tailcoat of the publicity that the Unrest film is generating so that she gains positive exposure for her questionable trials.

Really pleased you replied and it's excellent that you're so willing to be outspoken and stand up for those that need it.

The BPS and psychs have done this before with Millions Missing. I suspected they might do this and in fact have now done this again. They will also try to claim they are biomedical as EC has done with MEGA etc and try to probably use MEAction the way they used and co-opted the previously good charity AFME from the late 90s onwards into a charity front for themselves (see my link in my signature).

A firm statement now needs to be made by ME patient organisations similar to what MERUK have done with the false harassment claims by EC.
 
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