• 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.

    To become a member, simply click the Register button at the top right.

The Centre for Welfare Reform: Major breakthrough on PACE trial (August 19) (well referenced)

Esther12

Esther12

Senior Member
Messages
13,774
user9876 said:
Clearly his view of patient participation doesn't extend to ME patients.

https://twitter.com/i/web/status/766955741001441280
Click to expand...

"He has served as a member of the Gene Therapy Advisory Committee of the Department of Health, the Ethics of Research and Public Involvement Committee of the Medical Research Council and various other public and charitable bodies."
Click to expand...

I assumed that these committees were to control patient involvement, not give them an opportunity to criticise precious researchers!
 
snowathlete

snowathlete

Senior Member
Messages
5,374
Location
UK
A.B. said:
He changed his twitter settings to prevent the public from seeing his tweets. How ironic.
Click to expand...

Bizarre for someone at a public institution to do that. And yes, ironic! My feeling is some of these people have been told so many lies about patients (sorry, "activists" as the PACE authors like to refer to us) that they actually believe it (even though they have not seen any evidence - only words out a few people's mouths who they assume they can trust) and it blinds them to all reason and facts about PACE. It's quite a strange phenomenon, really. I wonder how do you get through to people who have been lied to so thoroughly like that? - what is the event that makes them realise that they've been lied to and consequently that patients may actually have valid criticisms of PACE? I suppose most people are not used to spotting when they are being lied to and probably it is quite hard to admit you've been duped. Luckily, the IC and judge were not duped, I suppose it helps that they are used to evaluating evidence and not taking people's words for things.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
A.B. said:
He changed his twitter settings to prevent the public from seeing his tweets. How ironic.
Click to expand...
There is indeed an irony in how this mass hysteria, sorry I mean psychogenic conversion disorder, is spreading through QMUL and associates, as they all fall victim to a threat that isn't actually there, ie the young male sociopathic ME activist. Even though he's a figment of their collective imagination, this guy is securing his twitter account against the perceived threat. However, if the threat is real to him, then he deserves our sympathy and compassion. Maybe one of his colleagues can give him some CBT and write a paper about the whole phenomenon.

I'd like to put a fiver on him re-opening his twitter account to the public soon, once he realises that there's no point in having a twitter account that nobody can read.
 
W

worldbackwards

Senior Member
Messages
2,051
TiredSam said:
There is indeed an irony in how this mass hysteria, sorry I mean psychogenic conversion disorder, is spreading through QMUL and associates, as they all fall victim to a threat that isn't actually there, ie the young male sociopathic ME activist. Even though he's a figment of their collective imagination, this guy is securing his twitter account against the perceived threat. However, if the threat is real to him, then he deserves our sympathy and compassion. Maybe one of his colleagues can give him some CBT and write a paper about the whole phenomenon.

I'd like to put a fiver on him re-opening his twitter account to the public soon, once he realises that there's no point in having a twitter account that nobody can read.
Click to expand...
I call for solidarity within the ME community. We are all young male sociopaths. Say it with pride.
 
A.B.

A.B.

Senior Member
Messages
3,780
Did I understand right that they pointed to posts on social media, Phoenix Rising in particular, as evidence for violent and dangerous activists? These idiots. Even if such activists existed (which I doubt) any problematic posts would get moderated anyway, and the police would be notified of real threats.

Venting one's frustration and calling them names in the form that has occurred here is not harassment or evidence of a threat. They are conflating their own speculation with concrete evidence. Just like they do when they construct their biopsychosocial models. Speculation and mere theoretical possibility suddenly becomes fact.
 
Snowdrop

Snowdrop

Rebel without a biscuit
Messages
2,933
The savvy psychiatrist might start considering a business in deprogramming.
 
You must log in or register to reply here.