• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Noirin08

Noirin08

Messages
10
Ysabelle-S said:
Telegraph journalist:

https://twitter.com/i/web/status/910774752557584384

I have to ask, who warned him? SMC? The dodgy researchers? And have the other journalists also been 'warned' about 'these people' - ie, ME patients.

Adding screencap of the full tweet:

View attachment 23950
Click to expand...

Many thanks to all those who replied to this 'sensitive' ignoramus as I hadn't noticed that he had quoted my tweet.

Would love to know who warned him and warned him about what exactly??
 
adreno

adreno

PR activist
Messages
4,841
HowToEscape? said:
No, they believe the goal is to elevate themselves at the expense of the patients
Click to expand...
I'm sure we can discuss this ad nauseum and will probably never agree. I just don't think the level zealotry we see from Crawley is possible if she didn't believe in her own ideas.

It doesn't make it any better. It is no excuse. I actually think idealists are even worse than fraudsters, because they are beyond reason. It has turned into religion for them. The world has to conform to their ideals, no matter how many have to burn in the process.
 
Countrygirl

Countrygirl

Senior Member
Messages
5,479
Location
UK
Dr CS has spoken out strongly on radio 4. He sounded quite angry.

He was only given about one minute. but did a good job.

Thank you for getting up at the crack of doom @charles shepherd

Edited to say I understand it was two or so minutes. I set an alarm so as not to miss it, finally fell asleep at 5 am after repeated doses of zopicline, so my time keeping neuron was a tad under par :) .
 
Last edited:
C

charles shepherd

Senior Member
Messages
2,239
Following my letter to Tom Feilden (Science Editor at BBC R4) yesterday the MEA was given a right of reply on BBC R4 Today at 6.50am this morning (Friday)

I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

I had a very difficult conversation with a senior producer on Today last night - who had clearly swallowed the message that we were being pretty horrible in opposing a clinical trial which had demonstrated that the LP could help to get kids with ME better and back to school

And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55

Time for breakfast…
 
Last edited:
RuthT

RuthT

Messages
70
charles shepherd said:
I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!

As it's BBC R4 Today they would not do this on the phone and the BBC satellite van that normally comes to my home address here in the wilds of the Cotswolds wasn't available this morning

I was also told that I would have the (approx) 10 minutes slot before the 7am news but was then informed that I would only have about 3 or 4 minutes to get my points across!

I had a very difficult conversation with the senior producer on Today last night - who had clearly swallowed the message that we were being pretty horrible in opposing a clinical trial which had demonstrated that the LP could help to get kids with ME better and back to school

And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55

Time for breakfast…
Click to expand...
Thank you so much for going on and well done in a hostile environment. It certainly wasn’t like for like opportunity: either in time or in approach. I’m on their case re factual correction of claims of abuse. Don’t expect response, but making the point on #r4today twitter feed nevertheless.
 
V

Valentijn

Senior Member
Messages
15,786
charles shepherd said:
I had to get up at 5am this morning to go to the BBC studio in Glos at just before 6am!
Click to expand...

charles shepherd said:
And I think Stephanie Saunders was going to go down that route as well - which is why I decided to just push on and say what I wanted to say before being chopped at 6.55
Click to expand...
Thank you so much for doing this. Trying to function at all with an early wake-up can be very rough on us, especially with added adrenaline from a radio appearance, anger at Esther's smears, and outrage with the entire pile of SMILE bullshit. So hopefully you'll recover quickly and won't crash from it.
 
C

charles shepherd

Senior Member
Messages
2,239
RuthT said:
Thank you so much for going on and well done in a hostile environment. It certainly wasn’t like for like opportunity: either in time or in approach. I’m on their case re factual correction of claims of abuse. Don’t expect response, but making the point on #r4today twitter feed nevertheless.
Click to expand...

Thanks - there were obviously other points that needed to be covered but there's a limit to what can be done in 3/4 minutes!

I'm afraid we really are in the 'naughty chair' as far as this part of the BBC is concerned

There are, however, other journalists at the BBC who are willing to listen…..

CS
 
trishrhymes

trishrhymes

Senior Member
Messages
2,158
I heard the interview @charles shepherd.

I thought you did really well with the limited time you had. It was clear you were in the middle of making your point about the trial not being scientifically valid when you were rudely cut off.

You did all that was possible in such a short 'interview'. Thank you for trying. Get some rest!

The Today program really is going from bad to worse. I've stopped listening. They are particularly bad on anything scientific - I suspect the editors are scientifically illiterate and too arrogant to realise that's a problem and seek advice.

Question - is it worth contacting the program to protest, or will that just feed into their narrative of vexatious patients?
 
C

charles shepherd

Senior Member
Messages
2,239
trishrhymes said:
I heard the interview @charles shepherd.

I thought you did really well with the limited time you had. It was clear you were in the middle of making your point about the trial not being scientifically valid when you were rudely cut off.

You did all that was possible in such a short 'interview'. Thank you for trying. Get some rest!

The Today program really is going from bad to worse. I've stopped listening. They are particularly bad on anything scientific - I suspect the editors are scientifically illiterate and too arrogant to realise that's a problem and seek advice.

Question - is it worth contacting the program to protest, or will that just feed into their narrative of vexatious patients?
Click to expand...

At this point I am going to write to the people at Today to thank them for giving me the opportunity to make a correction and explain (very briefly!) why we opposed the trial taking place

I then want to be positive and explain a few of the other things that are happening at the moment - in particular UNREST and the parliamentary reception at the Speaker's residence that we are organising

CS
 
L

Londinium

Senior Member
Messages
178
trishrhymes said:
Question - is it worth contacting the program to protest, or will that just feed into their narrative of vexatious patients?
Click to expand...

My personal view is we just keep pointing out the flaws in the trial and 'scientific' research. Even where we have legitimate complaints around the tone of the reporting, firing off against journalists on twitter etc feeds into the narrative that we're all aggressive. Unfair, but realistic.

(By 'we' I mean the patient community. Where organisations have been unfairly slurred like the MEA then it's entirely right and proper to demand redress).

Edit: and thanks to Charles for his early start - I can barely spell my own name before about 11am (which is why I'm faffing on PR when I should be working...)
 
S

Solstice

Senior Member
Messages
641
I'm taking comfort during all this from knowing the rituximab trial is gonna be done soon. Cyclophosphamide is in the works. Filgotinib is being developed. And the omf is plugging away aswell. So this might very well be absolete very soon.
 
RuthT

RuthT

Messages
70
Londinium said:
My personal view is we just keep pointing out the flaws in the trial and 'scientific' research. Even where we have legitimate complaints around the tone of the reporting, firing off against journalists on twitter etc feeds into the narrative that we're all aggressive. Unfair, but realistic.

(By 'we' I mean the patient community. Where organisations have been unfairly slurred like the MEA then it's entirely right and proper to demand redress).

Edit: and thanks to Charles for his early start - I can barely spell my own name before about 11am (which is why I'm faffing on PR when I should be working...)
Click to expand...
Agree. When I have posted or tweeted I have been polite & factual.
 
You must log in or register to reply here.