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

[charles shepherd]

Thanks for that @charles shepherd. I was a little alarmed to hear that "the trial should have been done on adults with three arms", but otherwise excellent. You did an excellent job of not letting Stephanie Saunders butt in with any stupid questions or comments.

Yes, I should have ideally started this bit with "If an unblinded clinical trial is going to be done on a treatment like this then it should be done in adults with there arms….

I'm sure you appreciate that I was trying to pack a lot into three minutes without using notes

Have just listened the the playback I think I stopped three or four questions before they got started - my political chums tell me this is how to do things when the interviewer is not sympathetic to what you are going to (or want to) talk about!

CS

 

[trishrhymes]

At least you didn't get John Humphrys as your interviewer! He is rude, never listens, interrupts all the time and is scientifically ignorant. I agree it's best to ignore the questions and just get on with what you want to say in such a short interview.

 

[lilpink]

Thanks for that @charles shepherd. I was a little alarmed to hear that "the trial should have been done on adults with three arms", but otherwise excellent. You did an excellent job of not letting Stephanie Saunders butt in with any stupid questions or comments.

Well she's a fully signed up member of the BBC/SMC collaborative isn't she?

 

[Chrisb]

At least you didn't get John Humphrys as your interviewer! He is rude, never listens, interrupts all the time and is scientifically ignorant. I agree it's best to ignore the questions and just get on with what you want to say in such a short interview.

At least he has the excuse of being well past retirement age-though what the BBC's excuse is is unclear.

 

[nasim marie jafry]

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…

CS

Thanks, Charles, I just listened to your piece, a shame you were given such little time trying to correct yesterday's abject nonsense from Crawley and Feilden. I very much appreciate your efforts.

 

[Dx Revision Watch]

I want to quote verbatim what Crawley said about the MEA:

Yeah I think it's really sad that [the ME Association] said children shouldn't have research and that conflicts with all current guidance, we need more trials in children. One of the issues in paediatrics generally is a lack of trials and that means children suffer because they don't have access to the best treatment

Well done, Dr Shepherd, for your rebuttal, this morning, and for not allowing the interviewer to repeatedly interrupt you.

This demonstrates very well how dirty EC is prepared to play.

From Draft Minutes CMRC Meeting, 15 January 2016:

http://www.meassociation.org.uk/wp-content/uploads/Minutes-of-CMRC-Meeting15-January-2016.docx

"Code of Conduct for Communications

"There have been a number of iterations of this and a further revision was considered. It is a really important document and we need to ensure that we are clear about how the CMRC supports scientific debate and does not stifle individual members’ perspective and positions."

But Crawley frames, on air, the MEA's legitimate concerns about the use of children in this study when no controlled studies have been carried out on adults, and the MEA's legitimate criticism of the study's design as "children shouldn't have research."

Strawmanning. And I hope this will be placed on record at the next CMRC meeting.

 

[Barry53]

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

Just shows the misunderstanding and bias we are up against, and the virtually certainty of which influential figure had been doing the influencing, especially given the line the producer was taking and had obviously swallowed.

I did notice how rushed the interview seemed to be. Can't help thinking aforesaid influence ensured your interview was not going to be nearly as long as the EC one was. Given the very compressed timescale I thought you did very well, especially in not letting yourself get railroaded near the end.

 

[Barry53]

Yes, I should have ideally started this bit with "If an unblinded clinical trial is going to be done on a treatment like this then it should be done in adults with there arms….

I'm sure you appreciate that I was trying to pack a lot into three minutes without using notes

Have just listened the the playback I think I stopped three or four questions before they got started - my political chums tell me this is how to do things when the interviewer is not sympathetic to what you are going to (or want to) talk about!

CS

Just a small hint for the future. Bear in mind that the vast majority of listeners will know little if anything about clinical trials and their jargon, and that "arms" is jargon. Yes "arms" may also be relevant in other spheres, but I suspect most people would not have understood that bit. I think "groups" would probably be much better understood by most listeners.

 

[Wonko]

I wonder if ritualised brainwashing really is the best treatment for children? Is this another case of if you don't want CBT/GET then it's the only treatment therefore, logically, it is the best treatment (that remains available), apart from the option of actually figuring out what's wrong and treating them, but come on, we aren't living in fantasy land here.

 

[charles shepherd]

Just a small hint for the future. Bear in mind that the vast majority of listeners will know little if anything about clinical trials and their jargon, and that "arms" is jargon. Yes "arms" may also be relevant in other spheres, but I suspect most people would not have understood that bit. I think "groups" would probably be much better undestood by most listeners.

Yes, you are quite correct - arms is medical jargon that most R4 listeners will not understand in this context

I'm afraid it's an occupational hazard - slipping into medical jargon when talking to a non medical audience

CS

 

[ukxmrv]

Yes, you are quite correct - arms is medical jargon that most R4 listeners will not understand in this context

I'm afraid it's an occupational hazard - slipping into medical jargon when talking to a non medical audience

CS

But in the (mainly unlikely) event that anyone involved in medicine or science was listening at that time of the morning you may have pitched it entirely right.

You certainly sounded as if you had a good grasp on the topic and sometimes that's the main thing.

 

[charles shepherd]

But in the (mainly unlikely) event that anyone involved in medicine or science was listening at that time of the morning you may have pitched it entirely right.

You certainly sounded as if you had a good grasp on the topic and sometimes that's the main thing.

Is anyone listening to Radio 4 at 6.50am?

I am normally still sound asleep!

C

 

[charles shepherd]

For anyone who missed the first broadcast it now has it's own little slot on the BBC R4 Today website:

http://www.bbc.co.uk/programmes/p05gsrnk

 

[trishrhymes]

Is anyone listening to Radio 4 at 6.50am?

I am normally still sound asleep!

C

I used to listen most days, often from the 6am start, until I got fed up with Humphrys' rudeness, the rapid topic changes just as they got interesting, and frequent interruptions from interviewers who didn't listen.

 

[Barry53]

Is anyone listening to Radio 4 at 6.50am?

I am normally still sound asleep!

C

Erm .. I do, whilst getting sorted for work (wishing I was sound asleep!)

 

[Barry53]

I used to listen most days, often from the 6am start, until I got fed up with Humphrys' rudeness, the rapid topic changes just as they got interesting, and frequent interruptions from interviewers who didn't listen.

Agree entirely. Mainstream news seems to be trying to copy the attention seeking tactics of reality TV, and I find myself just wanting Mr Humphreys to just shut up and let the person talk.

 

[bertiedog]

You did an excellent job of not letting Stephanie Saunders butt in with any stupid questions or comments.

BTW the interviewer was Stephanie Flanders not Saunders.

Pam

 

[user9876]

Yes, you are quite correct - arms is medical jargon that most R4 listeners will not understand in this context

I'm afraid it's an occupational hazard - slipping into medical jargon when talking to a non medical audience

CS

Communication isn't helped when you have a very short time and and aggressive interviewer. Really the interviewer should be helping make sure peoples points are understandable rather then showing their personal biases.

 

[BurnA]

Yes, you are quite correct - arms is medical jargon that most R4 listeners will not understand in this context

I'm afraid it's an occupational hazard - slipping into medical jargon when talking to a non medical audience

CS

Charles you really did an excellent job in this interview. Given you had such a short amount of time and it was on so early for you, you got all the main points across very well.

It's a pity it didn't go on longer because I think you would have made the interviewer seem very foolish.

Seeing as EC lied about the MEA on national airways and basically said the MEA was against research in children, will you be taking this any further?

Thanks.

 

[charles shepherd]

Charles you really did an excellent job in this interview. Given you had such a short amount of time and it was on so early for you, you got all the main points across very well.

It's a pity it didn't go on longer because I think you would have made the interviewer seem very foolish.

Seeing as EC lied about the MEA on national airways and basically said the MEA was against research in children, will you be taking this any further?

Thanks.

The next point that I was really hoping to bring in before the chop came from Stephanie was the fact that this could well be a placebo response - as was pointed out by the Prof from UCL in the SMC expert comments

If you have an unblinded trial with half the kids having treatment A (which with a label of specialist medical care ought to help) and the the other half having treatment A + treatment B (which could be anything that appears to be scientific and helpful and in the case of LP tries to persuade the kids that they are no longer ill) then it's not surprising to find that those having treatment A + treatment B may well report a better outcome

But this does not prove that treatment B is an effective form of treatment - as the authors acknowledge

In other words, the trial does not produce an answer to the key question as to whether LP is an effective form of treatment for ME/CFS

And yes, there are things happening away from the public domain in relation to what has happened over the past 48 hours……but I am not going into details here

CS