No. Of course not. This is, in fact, a serious thread.
...that's why we only have cookies.
ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in
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No. Of course not. This is, in fact, a serious thread.
...that's why we only have cookies.
I did the LP - it was garbage - I got WORSE.
Interestingly, before we started, Phil Parker told me they have trouble with lawyers and engineers who do the course. Wonder why? I know people who have benefited from it but I question whether they had ME at all?
Interestingly, before we started, Phil Parker told me they have trouble with lawyers and engineers who do the course. Wonder why? I know people who have benefited from it but I question whether they had ME at all?
Wonko
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I don't, I'm pretty damn sure they don't, for obvious, and not at all insane, reasons.
arewenearlythereyet
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Just listened to it...not too bad compared to what I had prepared for.
I noticed a pause followed by a quick intake of breath before she slagged off the MEA....almost as if it was something pre prepared that she was trying to shoehorn into the interview. The rest of it is her usual spouting off talking off the top of her head. I think this wasn't a slip, it was a deliberate dig.
I noticed a pause followed by a quick intake of breath before she slagged off the MEA....almost as if it was something pre prepared that she was trying to shoehorn into the interview. The rest of it is her usual spouting off talking off the top of her head. I think this wasn't a slip, it was a deliberate dig.
Isn't the afme losing a lot of members because they're (rightfully) get slagged of so much? Maybe she's trying to keep/make afme the go-to charity by slagging off MEA.
Good luck!
Mrs Sowester
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Just listened, either she is really thick or an evil genius.
She just makes sh*t up as she goes along.
How can she not know why patient groups and patients get angry with her ridiculous research? When she answered her own flipping question when she said "People are desperate for better research".
And she clearly said the MEA are against research on children.
Does not compute.
Head explodes, bang splatter and so on.
She just makes sh*t up as she goes along.
How can she not know why patient groups and patients get angry with her ridiculous research? When she answered her own flipping question when she said "People are desperate for better research".
And she clearly said the MEA are against research on children.
Does not compute.
Head explodes, bang splatter and so on.
Wonko
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Any evidence of cat?
According to a few documentaries I've seen, about why you shouldn't build your lair in a volcano, on a space station etc., the difference between being really thick and an evil genius is mainly white cat.
(and yes, I know it was radio, I think)
According to a few documentaries I've seen, about why you shouldn't build your lair in a volcano, on a space station etc., the difference between being really thick and an evil genius is mainly white cat.
(and yes, I know it was radio, I think)
Cinders66
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I appreciate the MEAs work/ stance on this issue.
But there's nothing taking on Crawley herself for not only the type/quality of research but her terrible media outings as well as how she smeered you which could easily affect your membership and ability to raise funds. The whole point of the collaborative was to encourage biomedical research - how is blaming an abusive field for lack of research at every opportunity, bringing up that old weight around our necks - mind body talk regarding CFS - and inflating claims for effective behavioural treatments in existence in any way attracting serious researchers or making funders step up?
I think Crawley is pretty much into hate speech against people with ME in the way she keeps on about threats and aggressive behaviour - it stigmatizes everyone with ME. It would get headlines if the same were applied to other minority groups.
snowathlete
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If I was a parent of a child with ME and I heard that and didn't know the truth about this trial, the strong message I would get would be that the MEA are dangerous and dodgy.
We need all the charities (perhaps via MEAction) to make a joint statement challenging and picking apart her false statements and her hate speech and of course the bad science.
Wonko
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.....and then we need people who don't actually have M.E., including but not limited to erm...people, just general people, her funders, other science type people, political type people, to actually read it.
From what I've seen that's the 'ard bit.
Invisible Woman
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Has Crawley actually breached any of the CMRCs charter/rules @charles shepherd ?
It seems that is a deliberate lie & slur against fellow CMRC member.
I think a complaint should be made to Holgate & CMRC. At the very least she should be made step down from her position of vice chair, if not ousted altogether.
Leaving aside the whole MEA membership argument.
It seems that is a deliberate lie & slur against fellow CMRC member.
I think a complaint should be made to Holgate & CMRC. At the very least she should be made step down from her position of vice chair, if not ousted altogether.
Leaving aside the whole MEA membership argument.
Invisible Woman
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Brilliant idea. A joint statement from all of them deploring her smearing of ME patients etc.
How could we coordinate that & would the MEA participate?
slysaint
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I just find it unbelievable that the BBC time and again gives her such free coverage (see FITNET also) with no counter argument.
The interviewers rarely have much knowledge of ME (which isn't surprising), but they seem to always take everything she says as fact.
This interview has been repeated on the BBC world service (on another thread) thus spreading these lies about the so called 'abuse' and the MEA.
Yet hardly a word about PACE.
Talk about biased reporting.
eta: anyone told C of Mar? maybe calls for another letter to the BBC
The interviewers rarely have much knowledge of ME (which isn't surprising), but they seem to always take everything she says as fact.
This interview has been repeated on the BBC world service (on another thread) thus spreading these lies about the so called 'abuse' and the MEA.
Yet hardly a word about PACE.
Talk about biased reporting.
eta: anyone told C of Mar? maybe calls for another letter to the BBC
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The original SMC press release was awful and contained this comment:
“Researchers decided to test the robustness of this treatment so, despite activists trying to stop them, they ran its first ever trial”
Full press release
Agreed, great idea. I can't imagine the MEA not wanting to be in this particular tent, but if not, it should be done anyway.
They're sounding unhinged. Same sort of stuff you get about bleach being the cure for cancer, when someone wants to dismiss criticism by claiming they're just being persecuted for being too awesome.
Mrs Sowester
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I just love the thought of ME activists.
An active day for me is being wheeled around a shop
An active day for me is being wheeled around a shop