ME/CFS (CFS/ME!) on BBC "Today" Programme NOW - can anyone tune in

[slysaint]

I just love the thought of ME activists.
An active day for me is being wheeled around a shop

an oxymoron? (so proud of learning that word!)

 

[Mrs Sowester]

Its such a good word, sounds really insulting, doesn't it?

 

[ash0787]

you have to ask why does this person keep getting featured in prominent TV and newspaper slots about the subject,
what has she done to be considered the 'foremost expert' and why its always just her or simon wessely ? as charles said he was contacted but then 'something' made them drop it. Also did Dr Davis ever get that article published when he did that interview at the conference in london ?

 

[user9876]

How can she not know why patient groups and patients get angry with her ridiculous research?

For a long time they have tried to put words into patients mouths. Its getting harder now others are also attacking their poor research.

 

[Countrygirl]

you have to ask why does this person keep getting featured in prominent TV and newspaper slots about the subject,
what has she done to be considered the 'foremost expert' and why its always just her or simon wessely ? as charles said he was contacted but then 'something' made them drop it. ?

That usual someone phoned someone (editor/producer) last night .

Usual someone. Controlling the message.

Drop CS.

He is not on message.

 

[lilpink]

I wonder if it can be used as a basis to kick her out of the CMRC.

What IS the point in the CMRC anyway? It's Holgate's / PDW's / Crawley's baby which yes, should have been strangled at birth. There is no bar to 'collaboration' at all. It's already happening with yearly get-togethers at the Invest in ME Conference... but it's done without silly rules and regulations and BPS Chairs. Just get rid of the whole damn shameful thing and kick the BPS influence into touch.

 

[lilpink]

"and am very annoyed"

But is in the tent with her!!!! Against the wishes of most people.

Please- we were not born yesterday.

https://forums.phoenixrising.me/index.php?search/44056854/&q=cmrc&o=date&c[node]=14

YEP , YEP and thrice 'YEP'.

 

[lilpink]

Just because we are a member of the Board of the CMRC does not mean that we are unable to criticise or complain about research that has been carried out by another member of the CMRC Board when necessary

You can say it..it just carries zero weight.

 

[Yogi]

What IS the point in the CMRC anyway? It's Holgate's / PDW's / Crawley's baby which yes, should have been strangled at birth. There is no bar to 'collaboration' at all. It's already happening with yearly get-togethers at the Invest in ME Conference... but it's done without silly rules and regulations and BPS Chairs. Just get rid of the whole damn shameful thing and kick the BPS influence into touch.

Yes but the MEA and Charles Shepherd are jealous of Invest in ME and that is why they want to get into the tent with Esther Crawley and undermine IIME.

 

[Wonko]

.

 

[Yogi]

Yes but the MEA and Charles Shepherd are jealous of Invest in ME and that is why they want to get into the tent with Esther Crawley and undermine IIME.

The MEA have done nothing for ME patients and are just used by the BPSers. The BPS have gone from strength to strength for two decades and the MEA and its advisors just stood by. Charles Shepherd just gets used by Esther Crawley and the psychs and he cannot even see that.

I am more annoyed with the MEA and Charles Shepherd than Esther Crawley.

 

[lilpink]

I am more annoyed with the MEA and Charles Shepherd than Esther Crawley.

Agree with your post except this bit. It would be exceptionally unfair to corral them in the same tent wouldn't it? Enough about tents!

 

[Yogi]

Agree with your post except this bit. It would be exceptionally unfair to corral them in the same tent wouldn't it? Enough about tents!

Charles and Esther have been in the same tent for a long time.

It's a bit rich for him to now play shock/horror about what EC has done to patients and said about the MEA. What do you think she is going to do? Doh

Thanks for the transcript!

I heard this live at 7.50am and am very annoyed by this totally inaccurate comment about the MEA and it's position on research into childhood ME/CFS (which we fully support - providing it is ethical and does not involve pseudoscience) to put it mildly!

Incidentally, we were approached last night by the overnight team on the BBC R4 Today programme to do an interview - but for reasons which have not been explained this was not then followed up……

CS

The MEA and Charles specifically chose to sleep in the Esther Crawley/CMRC/MEGA Tent. Now lie in it.

 

[Barry53]

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 does know. She doesn't give a sh*t. She does compute ... but running very different software to normal people.

 

[Barry53]

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.

I think the day will come when it actually stigmatises her.

 

[Barry53]

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.

Which of course is the classic pot calling the kettle black behaviour of her sort of person.

 

[Barry53]

an oxymoron? (so proud of learning that word!)

How about Dr. + Crawley.

 

[Barry53]

you have to ask why does this person keep getting featured in prominent TV and newspaper slots about the subject,
what has she done to be considered the 'foremost expert' and why its always just her or simon wessely ?

It's the SMC, and we know whose whats they can't stop licking.

 

[Barry53]

What IS the point in the CMRC anyway? It's Holgate's / PDW's / Crawley's baby which yes, should have been strangled at birth. There is no bar to 'collaboration' at all. It's already happening with yearly get-togethers at the Invest in ME Conference... but it's done without silly rules and regulations and BPS Chairs. Just get rid of the whole damn shameful thing and kick the BPS influence into touch.

A point of getting her out would be ... to see the look on her face.

 

[lilpink]

A point of getting her out would be ... to see the look on her face.

I'm not interested in her face. Having said that if I want to revel in a bit of schadenfreude seeing the CMRC implode would be much more satisfying, not least as it means one distraction which takes the eye off proper advocacy will be out of the way. As much as these silly people irritate me I can't wait to see the back of them, have a chance at health and not give them another thought. They're dispensable ... indifference will be a far greater cross for them to bear I'd wager.