"You and yours" BBC phone in on "chronic fatigue" -26 sept

[slysaint]

oh was it that long I shut my ears to it im afraid and thought it was shorter

correction from me; the lead into talking about the LP started with the last caller who said she couldn't afford it(around 35 mins in) who then went on to start talking about Reverse therapy, then they said they had received a lot of emails about it (LP) read out a couple of recovery stories and that they 'could not talk about ME without mentioning the Lightning Process'.........so then just by chance they just happen to have Professor Esther Crawley in the wings(around 36 mins in) waiting to talk about it.

 

[A.B.]

Why do so many psychiatrists and psychologists keep dredging this philosophical point of view when criticised, when it is usually not directly relevant to the criticism in question?

Because they have no answer to methodological criticism, therefore can only hope to derail the debate into philosophy where every opinion is valid.

 

[Chrisb]

Does this mean that as the BBC has raised the controversial question of Lightning Process, whilst refusing to give Charles any time to be heard on the subject, it is now incumbent on the BBC to give further equal programme time to CS to point out the shortcomings in LP and the "research" surrounding it?

 

[slysaint]

Does this mean that as the BBC has raised the controversial question of Lightning Process, whilst refusing to give Charles any time to be heard on the subject, it is now incumbent on the BBC to give further equal programme time to CS to point out the shortcomings in LP and the "research" surrounding it?

Yes, or allow callers to ask her questions like they do with other 'guests'...............

 

[Forbin]

I feel so cheated. When I was 14, I got some kind of nasty bacterial lung infection with a high fever. The only thing my doctor did for me was to administer an antibiotic injection and provide me with some antibiotic pills to follow up with by mouth. Where were the affirmations? Where were the command words? Why wasn't the power of my mind brought into play? Not only didn't he tell me to increase my exercise, but, shockingly, he told me to rest. How the heck was that supposed to motivate me to get well? Most concerning of all, he didn't want me going back to school and telling people I was OK until I was actually recovered.

Thank goodness medicine has progressed in the intervening years.

 

[TiredSam]

I tend to feel physically slightly better when feeling psychologically stressed - more energetic, less severe symptoms etc. Am I the only one?

The problem is afterwards...

In the last 4 years since having M.E. there have been a couple of times when I was under heavy stress - both times I kept going for 3-4 days on a couple of hours sleep a night and worrying about whatever it was all day - both times my M.E. symptoms seemed virtually on hold. Don't know whether it was adrenalin or some other hormone or whatever. I actually considered deliberately creating a few very stressful situations to keep my M.E. at bay, but didn't get round to it in the end.

 

[Londinium]

Does this mean that as the BBC has raised the controversial question of Lightning Process, whilst refusing to give Charles any time to be heard on the subject, it is now incumbent on the BBC to give further equal programme time to CS to point out the shortcomings in LP and the "research" surrounding it?

Honestly, I doubt it. Unlike the case with the Today Programme, Professor Crawley made no comments on the ME Association that would give them an automatic right to reply.

 

[Chrisb]

Honestly, I doubt it. Unlike the case with the Today Programme, Professor Crawley made no comments on the ME Association that would give them an automatic right to reply.

So do I, but what were the circumstances that entitled EC to insist on this further air-time, without having to face questioning by someone knowledgeable about the subject? Especially when an expert was conveniently at hand.

 

[NelliePledge]

That is a very good point. It's certainly worth contacting the program and asking them to look into LP. They are always chasing ratings at the BBC and will probably want to follow up after the interest they received yesterday.

yes this is the email I sent them

It is a great pity that other than a throwaway remark about a lot of people being against the LP yo didn't balance the positive spin given by E Crawley about this highly controversial approach. You could have asked her why she was involved with this process whose inventor has had rulings against him by the Advertising Standards Authority for having misleading claims that it is a cure for ME. The case was taken by Trading Standards and he is not permitted to say LP is a treatment.

https://www.asa.org.uk/rulings/phil-parker-group-ltd-a12-210374.html

The Crawley research is being analysed by other scientists and freedom of information requests made for the data.
The key element is that in researching an approach that tells people to ignore their symptoms how effective is using subjective measures to assess impact. If you tell people to ignore symptoms and do more and if they don't do the process properly it is their fault if it doesn't work then ask them how are they they will ignore their symptoms and tell you they are doing ok.

Would have been interesting if you had asked Dr Shepherd about this MEA have opposed this research from the outset on ethical grounds.

 

[Sean]

It seems she's very careful not to be placed in a position where she can be cross questioned. Hardly surprising.. if I had had to rely on her body of 'work' to substantiate my answers under close cross questioning I'd want to run for the hills too. She is a sham, and on some level she knows she is... she must know she is (her ability to strategize gives the game away)

I found the tone and content of the Crawley interview at the end so disconnected from the rest of the program, I thought it was probably pre-recorded earlier in the day, and I guess with the proviso from Crawley that she must be last on the program with no chance for Charles to rebut what she said.

Crawley and the whole Wesselyite school have shown themselves far too adept and successful at political manipulation and propaganda, over several decades, to ever be allowed the excuse that they don't understand what they are doing.

The most distinguishing characteristic of the BPS school and their fan pack is profound moral cowardice.

They are not stupid. They are gutless.

Because being a psych in the UK means never having to admit you are wrong.

 

[Hilary]

I'm not sure if I'm comfortable with making myself believe in something in order to make it work. It ought to work on its own merit.

Completely understand what you're saying but I'd be entirely comfortable with making myself believe in something if it would then relieve me of 24 years of ill health. I had a go. I wanted to believe it (this is some years ago btw, before I got old(er) and wised up). I knew someone who had done well with LP. I wasted lots of dosh...................... and as I said before (sorry), I GOT WORSE. Quite a lot worse. And you know what? IT WASN'T MY FAULT.

I got worse because it doesn't work for some (most?) people and telling those of us who actually have ME to go out and do what we would have been doing if we didn't have ME (or instructions to that effect) was/is potentially extremely damaging and should be flagged up in huge red letters as such.
Oh and to tell someone to say "I am doing ME" when symptoms reappear, just beggars belief and makes me want to swear a lot (but it'll upset my cats ).

 

[Ralph1]

At the end of the programme the presenter said that they had been overwhelmed by people's response to the show, more than for any other issue they'd covered. And this is "you and yours" a very popular Radio 4 programme.
This response says volumes about the lack of proper care in the U.K. For M.E.
Charles for the Association I thought was very good as were many of the speakers who's experience so closely mirrors my own
But why did they have to end with plugs for both the Lightning Process (aargh !) and the Optimum Health Clinic both of whose "methods" have been discussed on the forum here and found to be lacking in any real substance.

 

[Dolphin]

https://twitter.com/i/web/status/913014123440607235

 

[charles shepherd]

They are in the room together, how is CS not ripping EC a new one???

Just for the record:

I have been working way from home for the past four days in Oxford, Buckingham, Oxford and London

I took part from the BBC studios in Oxford

The programme was broadcast from the BBC studios at Broadcasting House in London W1

I assume Prof Crawley took part from the BBC studios in Bristol

When I was involved in the preparation stage I was informed that it would involve a number of pre-records followed by my interview

There would then be a phone in for the rest of the programme

I said I would be very happy to answer any questions put to me in Oxford

When I arrived in Oxford I was informed that my contribution would carry on till about 12.45

They would then be switching to an item on the Lightning Process and SMILE trial

The BBC knew that the MEA takes a very critical view of both the LP and SMILE trial. However, it was made clear that while I could listen to this item I would not be taking part and that Professor Crawley would not be doing a phone in

So there was no opportunity for me to make any contribution to the LP and SMILE item

Afterwards I was informed that this programme had brought in the highest number of listener responses they could remember

We are currently discussing whether the BBC can return to the subject of ME/CFS

I have arrived home to more emails than I can currently cope with - so this will probably be my one and only contribution to PR discussions for a while

CS

 

[Chrisb]

This seems to confirm our suspicions. Either CS was misled when being invited to participate or there was a late change to the format. One suspects the latter. Why would such a change occur?

The trailer for the programme indicated that it was to be a phone in, but CS was informed that there would be an "item" on LP and SMILE and that EC would not be doing a phone in. Very strange.

Given the rather clumsy nature of lead-in to the LP piece, one suspects that this was levered in after the trailers had been broadcast.

It brings to mind the stories of the early hard-hitting BBC political interviewing style:

"Good evening, Prime Minister. Have you anything you would like to say to the nation?"

So the BBC, in full knowledge that LP and SMILE are controversial, allows the researcher to make a statement in what purports to be a phone in programme, but positions it in such a way that no phone in calls can be taken, the presenter asks no questions, and the on-hand expert is refused input.

Remind me about the mission of the BBC. Inform, educate and entertain. Presumably this must be classified as entertainment.

 

[charles shepherd]

This seems to confirm our suspicions. Either CS was misled when being invited to participate or there was a late change to the format. One suspects the latter. Why would such a change occur?

The trailer for the programme indicated that it was to be a phone in, but CS was informed that there would be an "item" on LP and SMILE and that EC would not be doing a phone in. Very strange.

Given the rather clumsy nature of lead-in to the LP piece, one suspects that this was levered in after the trailers had been broadcast.

It brings to mind the stories of the early hard-hitting BBC political interviewing style:

"Good evening, Prime Minister. Have you anything you would like to say to the nation?"

So the BBC, in full knowledge that LP and SMILE are controversial, allows the researcher to make a statement in what purports to be a phone in programme, but positions it in such a way that no phone in calls can be taken, the presenter asks no questions, and the on-hand expert is refused input.

Remind me about the mission of the BBC. Inform, educate and entertain. Presumably this must be classified as entertainment.

Having worked with BBC TV and radio on many occasions over the years I am very well used to the way in which these programmes are often arranged at very short notice and that the running order changes constantly, often with some very last minute alterations to content, time and the people who are being interviewed

So that is all quite normal…….

What happened here is that following on from the first Today programme last week with Professor Crawley (as I have already reported) I went back to the BBC Science Editor to complain about the inaccurate statement that was made about the MEA and research in children during the interview. I also pointed out that having been asked if I would take part in the first Today programme I was surprised to find that this was not then pursued

Today then came back and offered the right of reply the following morning - which I accepted

I then wrote and thanked the Science Editor, queried why the BBC were not covering the main ME/CFS news item that week (i.e. the NICE guideline review), informed him about the UNREST film, and invited him to the parliamentary reception that we are organising at the Speaker's House in October - where Jen Brea will be present (John Bercow is an MEA Patron)

The BBC obviously got the message and followed up with both the You and Yours programme on Tuesday covering the NICE review and controversies surrounding the management of ME/CFS, and the UNREST film item yesterday - both on BBC R4

I think the inclusion of the SMILE trial item at the end of the programme on Tuesday was a last minute decision. As Professor Crawley did not take any phone calls, and it was made clear that I was not required for any discussion on the SMILE trial segment, I suspect that this may have been part of the agreement for Professor Crawley taking part

My view is that there should have been both discussion and an opportunity for at least one caller on the subject. This was an error of judgement by the BBC

CS

 

[slysaint]

Afterwards I was informed that this programme had brought in the highest number of listener responses they could remember

The same was said on the Kaye Adams program;
people tuned in/contacted them because they (BBC) had said it was going to be a phone-in program to talk about pwMEs experiences of treatment on the NHS.............not to hear Crawley regurgitate the same rubbish about her trial on the Lightning process.

This is a deceptive way of getting Crawley free unopposed advertising.

If they want their listener responses to go through the roof do a Q and A session with Professor Crawley............and maybe invite David Tuller to participate.

 

[Mrs Sowester]

Thank you @charles shepherd excellent advocacy.

 

[Mrs Sowester]

When was it on Kaye Adams program @slysaint ? I'd be interested to find it on iplayer

 

[lilpink]

The BBC knew that the MEA takes a very critical view of both the LP and SMILE trial. However, it was made clear that while I could listen to this item I would not be taking part and that Professor Crawley would not be doing a phone in

Hardly democratic of the Beeb... but then we know where their bias lies. But to be so blatant about it suggests their paternalism is borne of a sense that their membership of the 'Establishment' makes them unassailable. Until they aren't of course (think the Savile scandal).