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

[Mrs Sowester]

There was one last year and then another may this year:
http://www.meassociation.org.uk/201...scotland-here-we-come-again-11am-12-may-2017/
they are no longer available on iPlayer; but as charles shepherd was on it maybe the MEA have a recording(?)

Ooh, I misunderstood, thought there had been an item about patient's response to the You and Yours... I'm slower than usual on the uptake today!
But, yes, I get what you are saying, EC does have a distinct MO when it comes to manipulating the media, she claims the position of victim and gets afforded protection that means she doesn't have to defend any of her nonscience claims. Clever really.

 

[charles shepherd]

There was one last year and then another may this year:
http://www.meassociation.org.uk/201...scotland-here-we-come-again-11am-12-may-2017/
they are no longer available on iPlayer; but as charles shepherd was on it maybe the MEA have a recording(?)

I do the medical slot on this BBC Radio Scotland programme quite often but I don't think we have any of the programmes recorded in our archive.

But I will have a look later…..

Found one - it's from November 2016:

 

[Large Donner]

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

Too bad the presenter didn't just use some basic journalistic principles and do some digging deeper when she had Crawley on herself.

Exactly when is BBC going to do this over the LP, they have had Crawley on twice within a week now spinning this voodoo.

@charles shepherd why don't you contact radio 4 again explain exactly what the LP is how it has been taken issue with by the ASA, how Parker claims he can use tarot cards to tell him whats wrong with peoples bodies and how being an osteopath helps him enter their bodies.

There's no shortage of things that can be said about the LP to explain what nonsense it is. I'm sure there are numerous people here who could help you draft a statement to radio 4 with provable quotes from Parker and how the LP trains people to deny they are ill and say they are well or they wont get better then asks them if they are better.

 

[slysaint]

Ooh, I misunderstood, thought there had been an item about patient's response to the You and Yours... I'm slower than usual on the uptake today!
But, yes, I get what you are saying, EC does have a distinct MO when it comes to manipulating the media, she claims the position of victim and gets afforded protection that means she doesn't have to defend any of her nonscience claims. Clever really.

Well actually my point was, that as before (ie on the Kaye Adams programme) the reason for such a big response is that pwME rarely get the opportunity to say anything on the media.........................people were not doing so because Crawley was on it or because it was about the Lightning process. Neither of these last two were mentioned when they were asking people to contact them.

But, then again, had they forewarned people that she was going to be doing a slot they might have been inundated with emails with questions for Crawley (which might have meant that Crawley would have pulled out). So it was all a bit sneaky.

 

[charles shepherd]

Too bad the presenter didn't just use some basic journalistic principles and do some digging deeper when she had Crawley on herself.

Exactly when is BBC going to do this over the LP they have had Crawley on twice within a week now spinning this voodoo.

@charles shepherd why don't you contact radio 4 again explain exactly what the LP is how it has been taken issue with by the ASA, how Parker claims he can use tarot cards to understand peoples bodies and how being an osteopath helps him enter their bodies.

There's no shortage of things that can be said about the LP to explain what nonsense it is. I'm sure there are numerous people here who could help you draft a statement to radio 4 with provable quotes from Parker and how the LP trains people to deny they are ill and say they are well or they wont get better then asks them if they are better.

I think you may have missed some of my earlier comments on BBC coverage over the past 7 days - both here re You and Yours and on the BBC R4 Today programme discussions

The bottom line is that before the first Today programme was aired on Thursday last week we sent the BBC detailed information covering our position on the SMILE trial (which we opposed on ethical grounds when it was being planned) along with details of ASA and Trading Standards adjudications following our complaints about unproven therapeutic claims being made by LP practitioners

So the Science Editor, as well as senior producers and presenters on Today, Your and Yours etc do have this information

CS

 

[Chrisb]

So the Science Editor, as well as senior producers and presenters on Today, Your and Yours etc do have this information

Which makes it all the more reprehensible that they should have given further air-time to Crawley without permitting a reply. This looks like a serious failure of their duty and worthy of official complaint.

 

[Jan]

Which makes it all the more reprehensible that they should have given further air-time to Crawley without permitting a reply. This looks like a serious failure of their duty and worthy of official complaint.

Totally agree, many pwme felt conned into listening to and taking part in this programme thinking it was as the title suggested, a programme about NHS treatments (or the lack of them) for pwme. LP is not an NHS treatment, so this was basically a blatant advert for the LP, and people will now be encouraged to spend 100's of pounds pursuing it, seeing as there was no expert comment given that might have contradicted
this advice.

Very shoddy work by the beeb, it made me feel quite nauseous having to listen to that woman plugging LP, does she have shares in the business, or does she receive commision for each mention she gets in the press?

I understand that ASA banned PP from calling LP a treatment, yet how is it legal for EC to shamelessly plug it as a treatment on the BBC of all channels?

 

[Chrisb]

I do not have the stomach for going back and relistening to the programme, but perhaps someone, with a better memory, can advise whether it was made clear that the "findings" related only to teenagers within certain age limits, and only when LP was offered in conjunction with SMC (specialist medical care not Simon's media circus). I don't recall these provisos being emphasised.

EDIT My concern is that one would have to do more than mention this in passing. This reporting could act as a strong inducement to susceptible listeners to try this treatment. As such there should be a strong requirement to make clear any caveats-especially in view of the ASA ruling.

 

[Jan]

I honestly feel that listening to that woman is akin to emotional abuse. I was totally sickened to hear her at the end, it ruined the whole thing and I may not have bothered listening had I known she was taking part, let alone totally unopposed, with no right of reply from Charles. She had had her air time on her tiny biased trial already that week.

I'm so sick of feeling emotionally abused by the BPS brigade and the British press. I did not expect it to happen on a radio phone in show with the title given. The press might enjoy anything ''controversial'' but it harms vulnerable patients again and again.

 

[Large Donner]

I think you may have missed some of my earlier comments on BBC coverage over the past 7 days - both here re You and Yours and on the BBC R4 Today programme discussions

The bottom line is that before the first Today programme was aired on Thursday last week we sent the BBC detailed information covering our position on the SMILE trial (which we opposed on ethical grounds when it was being planned) along with details of ASA and Trading Standards adjudications following our complaints about unproven therapeutic claims being made by LP practitioners

So the Science Editor, as well as senior producers and presenters on Today, Your and Yours etc do have this information

CS

Could someone link me to that statement and who it was sent to. Was is specifically sent to radio 4 who have run these two features this week?

Surely we have the right of reply on radio 4 to Crawleys latest interview as information above was sent PRIOR to the radio 4 programmes and to be honest the ME Association DID NOT get a right of reply to Crawleys interview and the many dubious statements she made. Was the information sent by the ME association to the BBC in general if it was actually before the radio shows?

Even if the Science editor and producers and presenters do have this info they are not inviting at present your aired response to Crawleys freetime ad for LP the other day.

Really you need to ask them directly for another interview discussing LP as they so far have not let you speak on it. You have just raised your concerns with them in writing as far as I understand unless I am missing something.

If radio 4 were sent all the relevent concerns over the LP prior to Crawleys free ad its just appalling that zero challenge was put to her neither by the presenter, an opposing expert or by email questions.

They need to be asked why this didn't happen.

 

[charles shepherd]

Could someone link me to that statement and who it was sent to. Was is specifically sent to radio 4 who have run these two features this week?

Surely we have the right of reply on radio 4 to Crawleys latest interview as information above was sent PRIOR to the radio 4 programmes and to be honest the ME Association DID NOT get a right of reply to Crawleys interview and the many dubious statements she made. Was the information sent by the ME association to the BBC in general if it was actually before the radio shows?

Even if the Science editor as producers and presenters do have this info they are not inviting at present your aired response to Crawleys freetime ad for LP the other day.

Really you need to ask them directly for another interview discussing LP as they so far have not let you speak on it. You have just raised your concerns with them in writing as far as I understand unless I am missing something.

I was given a slot on the BBC Radio 4 Today programme on Friday morning last week to explain that the information about the MEA research fund from the interview on the programme the day before was inaccurate and an opportunity to explain some of the reasons why we opposed the SMILE trial taking place and the reasons why the results from an unblinded trial with subjective outcome measures (i.e. the SMILE trial) need to carry a health warning

Much as I dislike the way in which the BBC has covered the SMILE trial over the past 7 days I don't think we have a strong case for requesting a further right of reply

And I don't do 'banging head against a brick wall' complaints. Life is too short…...

CS

 

[Large Donner]

I was given a slot on the BBC Radio 4 Today programme on Friday morning last week to explain that the information about the MEA research fund from the interview on the programme the day before was inaccurate and an opportunity to explain some of the reasons why we opposed the SMILE trial taking place and the reasons why the results from an unblinded trial with subjective outcome measures (i.e. the SMILE trial) need to carry a health warning

Much as I dislike the way in which the BBC has covered the SMILE trial over the past 7 days I don't think we have a strong case for requesting a further right of reply

And I don't do 'banging head against a brick wall' complaints. Life is too short…...

CS

Even if radio 4 didn't offer you an opportunity to respond to Crawleys free ad it would be on record that you have raised further concerns with them over the LP and the flaws in Crawleys unchallenged claims on their station.

I'm pretty sure people here could draft a statement for you so you don't have to use up all of your own time which is sparse. Why don't you take up that offer?

Perhaps it would be better coming from @Jonathan Edwards as he is not in the CRMC? Would he be prepared to ask radio 4 for an interview to follow on from Crawleys?

 

[charles shepherd]

Even if radio 4 didn't offer you an opportunity to respond to Crawleys free ad it would be on record that you have raised further concerns with them over the LP and the flaws in Crawleys unchallenged claims on their station.

I'm pretty sure people here could draft a statement for you so you don't have to use up all of your own time which is sparse. Why don't you take up that offer?

Perhaps it would be better coming from @Jonathan Edwards as he is not in the CRMC? Would he be prepared to ask radio 4 for an interview to follow on from Crawleys?

We have followed up the You and Yours item with some correspondence and it looks as though the programme may well return to the subject of ME/CFS - following the tremendous response they got on Tuesday this week

At the moment we are not pushing for any more BBC Radio 4 time to be given to the SMILE trial and the Lightning Process

But I am talking to other parts of the BBC about the Lightning Process

CS

 

[anni66]

We have followed up the You and Yours item with some correspondence and it looks as though the programme may well return to the subject of ME/CFS - following the tremendous response they got on Tuesday this week

At the moment we are not pushing for any more BBC Radio 4 time to be given to the SMILE trial and the Lightning Process

But I am talking to other parts of the BBC about the Lightning Process

CS

Key to EC' s work is diagnostic screening. I have not read all of her papers , but those that i have clearly have nothing to do with ME. Extrapolation of results to a group that was not assessed is surely unethical and jyst plain wrong.

 

[SamanthaJ]

Don't think anyone's posted this, apologies if so. Just listened online to today's You and Yours which had a tiny bit more on ME:

http://www.bbc.co.uk/programmes/p05hks34

They included a recorded conversation with a caller they said they hadn't had time for on Tues. She talked about finding anti-viral drugs helpful and no longer being able to get them. I think it's about half way through. There didn't seem to be any references to LP today unless I missed it. They commented again on it being their biggest response ever, sounded like they'll cover it again, hopefully with a bit more awareness. Still can't get my head around a consumer programme getting conned into promoting a dodgy miracle cure.

 

[NelliePledge]

They included a recorded conversation with a caller they said they hadn't had time for on Tues.

lends weight to the Crawley being shoehorned in theory and I suspect this recording was cut to make space

but good that it was used to pick up on ME again and it does sound likely that Y&Y will come back to it

 

[NelliePledge]

But I am talking to other parts of the BBC about the Lightning Process

i would love to see the guys on Channel 4s the Last Leg rip LP apart - they would have to get an extra large bullsh1t buzzer

 

[SamanthaJ]

Also can't get my head around the shoddy way @charles shepherd has been treated by some at the BBC these last few weeks. Well done for managing to get some accurate coverage in spite of this. Your hard work is greatly appreciated.

 

[Invisible Woman]

Well done for managing to get some accurate coverage in spite of this. Your hard work is greatly appreciated.

I echo this. Thanks for all your hard work. You must have an almost infinite well of patience to carry on dealing with the likes of Crawley etc Al.

 

[Chrisb]

Also can't get my head around the shoddy way @charles shepherd has been treated by some at the BBC these last few weeks

That is one aspect of the matter. Another way of looking at it is that CS is a lobbyist for a point of view. The real losers are the listeners, who are potentially misinformed, and the licence fee payers, who are not receiving what they pay for.