Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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.
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!
Thanks! I did struggle with trying to not let it go into a rant to be honest (deleted/replaced bits more than once!) Glad someone thinks it's okay!This is a great letter. Thank you for taking the time to write it from everybody in the patient community
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!
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.
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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Not a problem, it's good to point out if I got something wrong, no offence taken, all goodI'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.
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@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.
Thanks @YogiHi 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.
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.
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.
Thunderclap is a great idea - I know I suggested it on Twitter a bit ago, but wasn't sure folks would go for it, great someone did it!Someone earlier mentioned a thunderclap, here is the link
https://www.thunderclap.it/projects/64068-tedx-energy-metabolism-me