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

[Yogi]

Does someone know how to record the BBC programme onto youtube. It would be good to have an archive of all misconduct and lies by EC on record.

Finally shame on the ME Association for collaborating with Esther Crawley!!! He has not answered many of our questions and I am concerned at the faux concern for ME patients in their press releases but on the vital issue they collaborate with this charlatan which allows her to get away with all this misconduct and behaviour.

I am fed up of reading about ME Association for decades showing this public concern knowing that it won't make any difference to the Psychiatric/BPS juggernaut.

 

[Sean]

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!

It is way past merely totally inaccurate, and well into blatant vicious smear tactics.

 

[Valentijn]

It is way past merely totally inaccurate, and well into blatant vicious smear tactics.

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

 

[Barry53]

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

There was also an earlier item, at which they said there were going to be (it seemed to me from the way they said it) at least two more items, so should have been something else other than EC ... unless that was originally going to be you Charles, and for "some reason" wasn't?!

Looks like she's shot herself in the foot yet again. Main radio news telling blatant lies about the MEA.

 

[Barry53]

Finally shame on the ME Association for collaborating with Esther Crawley!!!

Huh ??????????????????????

 

[Yogi]

Huh ??????????????????????

On the CMRC and MEGA. Lots of threads on it here.

 

[Barry53]

On the CMRC and MEGA. Lots of threads on it here.

Ah, that angle. I thought you were directly saying something re the interview.

 

[Barry53]

It is way past merely totally inaccurate, and well into blatant vicious smear tactics.

Seems to be a bit of a pattern here ... . And she does it oh-so "sincerely"

 

[Solstice]

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

Get out of that tent of hers, pretty plz.

 

[slysaint]

Radio 4 BBC Today Program http://www.bbc.co.uk/programmes/b093hwgn
starts 1:50:00

 

[Yogi]

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

"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

 

[NelliePledge]

BBC website/online coverage - which has a bit more balance and contains quite bit of info from the MEA press statement:

http://www.bbc.co.uk/news/health-41336384

yes it does but as MEA have been criticised on the Today programme you should be allowed to answer that on the same programme.

 

[Barry53]

Radio 4 BBC Today Program http://www.bbc.co.uk/programmes/b093hwgn
starts 1:50:00

Can't listen to this at the moment, but there were at least two items on ME, the EC piece, and another piece a bit over an hour before it, at roughly between 06:30 to 06:50 UK time. Can you suss the time into the recording for the 1st piece as well? The EC piece was at around 07:50. So I think that means it will be at around 00:30:00 to 00:50:00 into the programme, sorry I can't be more precise.

 

[Sean]

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

She must be dangerously close to actionable defamation.

The EC piece was at around 07:50.

I have made a recording of that, for posterity's sake. (Haven't listened to it yet. Not sure I can stomach it right now.)

 

[Valentijn]

She must be dangerously close to actionable defamation.

I was thinking that as well. She is harming the MEA's reputation with her accusations.

 

[A.B.]

Will the ME Association say nothing to avoid coming across as unreasonably critical and playing into the harassment narrative, thereby fulfilling the purpose of the harassment narrative?

 

[slysaint]

Can't listen to this at the moment, but there were at least two items on ME, the EC piece, and another piece a bit over an hour before it, at roughly between 06:30 to 06:50 UK time. Can you suss the time into the recording for the 1st piece as well? The EC piece was at around 07:50. So I think that means it will be at around 00:30:00 to 00:50:00 into the programme, sorry I can't be more precise.

first bit starts 32:00 to 35:50 explains a bit about the LP and talks about the 'controversy'.

eta:
slysaint said: ↑
Radio 4 BBC Today Program http://www.bbc.co.uk/programmes/b093hwgn
starts 1:50:00

 

[Revel]

She says we have to do research because they are different to adults with ME.

I have heard Crawley use this line several times and I know it perplexes those of us who have had ME since childhood and still have it in adulthood. Does this juvenile version of ME that she speaks of mutate once we reach 18?

Was the period of near-full remission during my teens in reality a cure (I stopped "doing" ME), but then I contracted adult ME a year or two later? How unlucky am I, what are the odds?

Granted, the younger you are, the more likely you are to improve, some even restored to full health. Is this what she is referring to? It has always felt like the same illness to me and my ability to "bounce back" has merely reduced as I've aged.

If Crawley is to be believed, the adult version of ME appears to include additional symptoms: bitterness, an increase in abusive behaviour and a reluctance to want to get better . . .

If it is something other than reported higher recovery rates, can somebody please point me in the direction of the research that supports Crawley's repeated statement?

 

[Cinders66]

https://twitter.com/i/web/status/910739842719453184

Jees. Ed Sykes former or current CMRC guy. What is the point of association with these people, they screw us over

 

[TiredSam]

She must be dangerously close to actionable defamation.

I think the MEA might have an issue with spending their members' donations on costly and unpredictable legal action, and rightly so. However, demanding a right of reply (and an apology?) from Radio 4 (and perhaps EC and Bristol University?) and telling Esther Crawley to f*** right off would seem an appropriate alternative course of action.

EDIT: Misplaced apostrophe. I'm so sorry, must have got a bit riled up.