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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..

TreePerson

Senior Member
Messages
292
Location
U.K.
@charles shepherd I am very grateful for all that you do and for your quote in the Guardian providing balance to their dreadful article.
But I think you need to be harder hitting. So "significant worsening of symptoms" can mean completely bedbound and permanent disability. And mild can lead to severe. People need to know this. They need a strong image in their minds in order to understand just how dangerous this can be and to counter the extremely plausible media narrative.
 
Messages
2,158
I haven't read all this thread yet. Too depressing.

The more I hear about LP, the more I think -

Child abuse, coercive control, medical abuse, Crawley should be struck off.

Adults with authority telling vulnerable children to keep secrets or the treatment won't work...
 

Cinders66

Senior Member
Messages
494
Esther Crawley has just been on radio 4 saying it's really sad the MEA doesn't want research in children, she reduced the complex criticism of the ethics and methodology and implications of the trial to being anti research and sad.

Half the segment was on abuse, who brought that up? And for effect she brought an ex patient , now researcher who wanted to remain annoymous due to abuse.

Despite the constant reference to controversy they didn't attempt balance by putting a critic up against Crawley who perpetuated a narrative that 85% of kids get better in a year and that those who are abusive are a minority whilst the rest welcome research and want to get better so as far as Crawley presents it there are no rational critics just fans or abusers.

I think MEA should sever all connection with this woman. Time is ripe for a dramatic quitting of the the CMRC. Go it alone , we don't need Crawley and pariante and Murphy and SMC in our tent.

It's about 7:50 am for listening again
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Esther Crawley has just been on radio 4 saying it's really sad the MEA doesn't want research in children, she reduced the complex criticism of the ethics and methodology and implications of the trial to being anti research and sad.

Half the segment was on abuse, who brought that up? And for effect she brought an ex patient , now researcher who wanted to remain annoymous due to abuse.

Despite the constant reference to controversy they didn't attempt balance by putting a critic up against Crawley who perpetuated a narrative that 85% of kids get better in a year and that those who are abusive are a minority whilst the rest welcome research and want to get better so as far as Crawley presents it there are no rational critics just fans or abusers.

I think MEA should sever all connection with this woman. Time is ripe for a dramatic quitting of the the CMRC. Go it alone , we don't need Crawley and pariante and Murphy and SMC in our tent.

It's about 7:50 am for listening again


This is what happens when you insist on staying in bed with the powerful enemy. They eventually destroy you because they have all the power and you are always left on the defensive. The correct response is to walk away because they will destroy you if you stay. Much like any abusive relationship.

However I suspect that penny still hasn't dropped
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany

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Time for some flat-earthers to post some unscientific twaddle!

Shame about Jane Reid, I usually like a poster who can apostrophize correctly :(
 

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
On a side note: does the shadowy figure who has this agenda of undermining CFS research pay extra for authors to comment on how threatening and menacing the sick, mostly house and bed bound people are? In all the articles I've seen, it always reads like a personal, bitter remark by someone: they're scaring away researchers, no one wants to work with them due to the threat of violence, they're like crazed animal rights activists etc. It's pathetic lol...

1. Why is the SMC's Ed Sykes still involved with CMRC?
2. Why is the MEA still involved with CMRC?
 
Messages
2,158
When this is eventually shown to be a pseudo-scientific cult involving secretive practices, brainwashing and false health information, I wonder whether the NHS will pay for the necessary deprogramming and treatment for the distress, self blame and missed diagnoses caused by patients being told to ignore symptoms.

On a related subject, members of the CMRC should be asking themselves serious questions about why its deputy chair chooses to make a great fanfare, with SMC support, for a small open label trial with subjective outcomes of quack treatment, yet stays silent about all the good biomedical research talks at the recent CMRC conference.

Why didn't we see Holgate and Crawley doing an SMC press conference quoting important work on orthostatic intolerance, why didn't they publicise Montoya talking about the damage caused by the psychological model of ME?
 

lilpink

Senior Member
Messages
988
Location
UK
I think MEA should sever all connection with this woman. Time is ripe for a dramatic quitting of the the CMRC. Go it alone , we don't need Crawley and pariante and Murphy and SMC in our tent.

Thank heaven I'm not the only one calling for this. I'd wager the time was over-ripe. It's smelling like a forgotten tomato, and growing green fur! Come on MEA you have no 'clout' against this ridiculous woman whilst still fannying around in that blasted tent like 'nuts in may'.