Demepivo
Dolores Abernathy
- Messages
- 411
An oddity. Phil Murray who talked about the MEGA PAG at the CMRC conference complaining about the Guardian story (but not Crawley or the SMC who supplied the information,)
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"Got ME? Just SMILE!" - Media coverage of the SMILE trial…..
- Thread starter charles shepherd
- Start date
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
- UK
I have always felt that we are being used as click-bait.
I have in the past copied the whole negative article on to here but the mods truncated it due to copyright.
If we can go through all the media articles copy and past them here it would help. Screenshots are also good.
It stops the hate-mongers of the press and EC profiting financially from us.
In the UK there is a campaign on twitter about #stopthehate to stop the press spreading hate about marginalised groups and the advertisers advertising on such papers. We should stopthehate
To the PRmods: if they news orgs come to PR to ask that we have breached copyright well they can FUCK OFF!!
At least we know the media are coming to PR and hopefully they should read our comments and learn the the reality of neurological ME. WIN-WIN for us
Note: this is for negative, hateful discriminatory articles. Please continue to post links to balanced articles.
I have in the past copied the whole negative article on to here but the mods truncated it due to copyright.
If we can go through all the media articles copy and past them here it would help. Screenshots are also good.
It stops the hate-mongers of the press and EC profiting financially from us.
In the UK there is a campaign on twitter about #stopthehate to stop the press spreading hate about marginalised groups and the advertisers advertising on such papers. We should stopthehate
To the PRmods: if they news orgs come to PR to ask that we have breached copyright well they can FUCK OFF!!
At least we know the media are coming to PR and hopefully they should read our comments and learn the the reality of neurological ME. WIN-WIN for us
Note: this is for negative, hateful discriminatory articles. Please continue to post links to balanced articles.
He is a AFME type stooge to be used by EC and crowd. This is just a spectacle of hand-wringing for gullible patients so that they support CMRC and MEGA.
Correct. This is the (legitimate) political power we have to tap into.
- Messages
- 26
- Location
- Gloucestershire
It adds to dilemma - do you tell consultant about unrelated prob that you have ME.
This is good...and good on them for realising in good time that the CMRC just wasn't the place people serious about this disease should be lurking. Well done them. I've been extremely condemnatory of their membership of the CMRC so it's nice to see them back on track. I look forward to their upcoming review.
I really do not understand what some of our other big ME charities who rake in so much money from patients do all day especially AFME and MEA. Anyone?
Why have they not put out such a statement.
Completely agree with this. How can this not be 'hate crime'? Can someone post what constitutes 'hate crime' in law so we can assess if this could come under that please?
Ysabelle-S
Highly Vexatious
- Messages
- 524
I don't see any difference between the abusive hate speech I might be subjected to (from gays and straights) as a bisexual person, and the abusive hate speech I'm seeing from so-called researchers and media on ME. I think the law in England and Wales has just been changed to include recognition of biphobic abuse from gays which contributes to greater mental health and minority stress issues for bisexual people, including self harm and suicide risk. I don't think ME sufferers should be having to suffer any bullshit either. Especially since we start off as ill, and don't need the added burden of rampant bigotry and defamation from the very profession that's meant to treat us. It only makes us more ill. Of course, the more ill we are, the harder it is to fight back, and those responsible know this only too well. It's like they want to break whatever spirit we have left so they can feed on what's left for the sake of their selfish twisted careers. Well, they underestimate us and the real scientists if they think they're going to win. The worse their defamatory behaviour gets, and the worse the quackery they promote, the more it's going to come back to bite them in the end.
The MEA runs numerous surveys for people to click on. Perhaps they could run one asking if EC and her ilk have caused distress from her hate speech. People could then click on appropriate answer.
AndyPR
Senior Member
- Messages
- 2,516
It is good that MEA have shared but still not good enough. Why can they not make a statement individually or with all charities on their website so it can be used against EC. What prevent them doing that.
These posts get lost. If we have all the statements about harassment then they can be documented on MEPEdia and used in future.
Not good enough.
So, I've been ruminating on this trial a bit more. I'm sure others better at this than me (Keith is on the case by the sounds of it!) will over time find and document many methodological flaws - my guess is that selection bias arising from the fact that only a third of eligible participants wanted to go anywhere near LP, suggesting that more woo-friendly households were involved, is a key flaw.
While that's going on, I want to share a theory I now have on the gap between the trial completing and publication. My guess is that publication only occurred as Bristol Uni has been glacially moving to publish results for all registered trials, and that otherwise it'd have been quietly shelved. I'll be honest and say I was surprised at the group pushing a positive result. I had (see my earlier postings) expected a very small effect (thereby justifying the trial as not being unethical) but an overall conclusion that LP is inferior to GET.
However, given this trial gave a supposedly positive result, why such a long delay to publish? One could understand why a scientist might be embarrassed to publish a negative result when they'd fought so hard to defend a trial in the first place, but a supposedly vindicating positive result?
My theory is this: Prof Crawley and team genuinely never expected a positive result. Indeed, they went ahead with the trial expecting a negative result. They would then be able to trumpet this result as proof of 'we're good scientists really, see, and all those nasty ME patients who accuse us of manipulating trials are wrong.' So when the data showed that the LP kids gave higher self-reported scores and went to school more (or were sent to school by parents who erroneously now believed them to be cured and/or just suffering 'negative thoughts', more likely) it would have left the team with a dilemma:
Anyhow, that's just my theory, based on the delay to publication and the fact you can almost hear the embarrassment in the R4 interview and press release - lots of caveats and get-out clauses that can be pointed to in future, far less bullish than the PACE trial output.
(I really must go and do some work today...)
While that's going on, I want to share a theory I now have on the gap between the trial completing and publication. My guess is that publication only occurred as Bristol Uni has been glacially moving to publish results for all registered trials, and that otherwise it'd have been quietly shelved. I'll be honest and say I was surprised at the group pushing a positive result. I had (see my earlier postings) expected a very small effect (thereby justifying the trial as not being unethical) but an overall conclusion that LP is inferior to GET.
However, given this trial gave a supposedly positive result, why such a long delay to publish? One could understand why a scientist might be embarrassed to publish a negative result when they'd fought so hard to defend a trial in the first place, but a supposedly vindicating positive result?
My theory is this: Prof Crawley and team genuinely never expected a positive result. Indeed, they went ahead with the trial expecting a negative result. They would then be able to trumpet this result as proof of 'we're good scientists really, see, and all those nasty ME patients who accuse us of manipulating trials are wrong.' So when the data showed that the LP kids gave higher self-reported scores and went to school more (or were sent to school by parents who erroneously now believed them to be cured and/or just suffering 'negative thoughts', more likely) it would have left the team with a dilemma:
- Have to go on record and back a treatment created by a faith healer, based on what is widely regarded to be pseudoscience (NLP)? or
- Admit that the whole methodology of this trial, and similar trials on CBT/GET in the past, is fatally flawed in that it is almost guaranteed to suffer from major placebo response and selection bias?
Anyhow, that's just my theory, based on the delay to publication and the fact you can almost hear the embarrassment in the R4 interview and press release - lots of caveats and get-out clauses that can be pointed to in future, far less bullish than the PACE trial output.
(I really must go and do some work today...)
Mrs Sowester
Senior Member
- Messages
- 1,055
Crawley came out fighting dirty on this one, she got a low blow in before the first whistle.
First they ignore you, then they laugh at you, then they fight you, then you win.
We're in the penultimate round.
First they ignore you, then they laugh at you, then they fight you, then you win.
We're in the penultimate round.
Dx Revision Watch
Suzy Chapman Owner of Dx Revision Watch
- Messages
- 3,061
- Location
- UK
http://www.derbyshire.police.uk/Contact-Us/Signposting/Hate-Crime/What-is-Hate-Crime.aspx
https://www.lqgroup.org.uk/community-information/anti-social-behaviour/harassment-and-hate-crime/
What is hate crime?
Criminal Offence
+ Bias Motivation
= Hate Crime
It appears that a criminal act has to have been committed first.
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Defamation of a group is problematic unless it is certain protected groups or the group is small enough that individuals could be identified.
https://www.lqgroup.org.uk/community-information/anti-social-behaviour/harassment-and-hate-crime/
What is hate crime?
Criminal Offence
+ Bias Motivation
= Hate Crime
It appears that a criminal act has to have been committed first.
-------------
Defamation of a group is problematic unless it is certain protected groups or the group is small enough that individuals could be identified.
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Esther12
Senior Member
- Messages
- 13,774
He's sharing some okay stuff too. I didn't think his talk at the CMRC was great, but it's worth being cautious [edit] in criticism of those who may not have had time to look into all the details (at least when they're not getting paid for claiming 'expertise').
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