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

[Jonathan Edwards]

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?

Like Charles I am trying to get people at the BBC to sharpen their focus on LP. It's a bit like salmon fishing. You never quite know when there might be a bite but you keep casting.

 

[Wonko]

Embrace your inner, and outer, bear?

 

[arewenearlythereyet]

Embrace your inner, and outer, bear?

So many things I would like to say

 

[lilpink]

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.

I know this is a bit left field but I noticed Alice Beer (formerly of 'Watchdog' ) saying only this week that if there was an issue with which people were finding it hard to get traction (more in the 'consumer' sense than anything else, but as others have noted this appears to be a consumer programme) then to raise the question on Twitter and tag her. If a lot of people tagged her and she was able to see that LP is a fraudulent, snake oil 'treatment' already banned in terms of much of its advertising by the ASA then she might be intrigued to look more closely at the topic. Her Twitter address seems to be: https://twitter.com/_alicebeer?lang=en

 

[lilpink]

Like Charles I am trying to get people at the BBC to sharpen their focus on LP. It's a bit like salmon fishing. You never quite know when there might be a bite but you keep casting.

You need the right 'fly'.

 

[charles shepherd]

You need the right 'fly'.

Fortunately, as Jonathan indicates >> there are journalists and producers at the BBC who are willing to take a much more questioning and investigative approach in situations like this,

Rather than just regurgitate the contents of a press release…….

I am in contact with two such journalists at the BBC at the moment

 

[Barry53]

Fortunately, as Jonathan indicates >> there are journalists and producers at the BBC who are willing to take a much more questioning and investigative approach in situations like this,

Rather than just regurgitate the contents of a press release…….

I am in contact with two such journalists at the BBC at the moment

Immensely heartening.

 

[Jan]

It's another clever diversion tactic from Crawley and co. We are all talking and tweeting about the LP trial, instead of the decision by NICE. This was huge news for us, and we are allowing it to be totally overshadowed by Crawley's small trial. Crawley dismisses biological trials with such few participants, so why I wonder did the SMC announce this tiny trial as if it has any significance? To divert attention away from the NICE decision, and they have succeeded!

 

[PracticingAcceptance]

Yes @Jan - I don't want to get het up over LP in this programme any more - although one of the results of the programme is that I'll have to explain that LP is unlikely to help me much, to all my well wishers who would have been listening.

But the other main result of the programme - which is a bigger deal - is that more people I meet will have heard of ME thanks to that, and people that already know about it will have a better idea of what it's actually like, because of all those wonderful people that phoned in and honestly described their experience. A very well done to them. They spent their precious energy on doing that. I know that would have wiped me out. I'm grateful to them.

I know my dad and grandma were listening. My age group doesn't really listen to radio 4, but it might make a difference with people I know of other generations. In any case, it helped my dad understand a bit more, which is useful for me

 

[Esther12]

Did transcripts or recordings ever get posted for all these recent radio 4 bits? They normally seem to appear, but I've not spotted them yet (I've not listened to them myself).

 

[Little Bluestem]

'Carol' then explained she had been uncertain whether to ring You and Yours to spread the good news live on air or not or whether to ring this unknown person whose name she had found on Directories Enquiries as a contact for ME. She settled on me to give you her message.

Whee! I'm soooo glad she decided to call you. I can't imagine having that go out over the radio. Although I can't imagine that many people would believe it.

"my elephant wears green cheese pyjamas while making toast"

That seems an excellent response for whenever anyone says something nonsensical.

 

[Countrygirl]

Whee! I'm soooo glad she decided to call you. I can't imagine having that go out over the radio. .

Yes, I was glad she told me of her important scientific breakthrough rather than announce it to the nation.

It wouldn't have done our street cred much good.

 

[SamanthaJ]

It's another clever diversion tactic from Crawley and co. We are all talking and tweeting about the LP trial, instead of the decision by NICE. This was huge news for us, and we are allowing it to be totally overshadowed by Crawley's small trial. Crawley dismisses biological trials with such few participants, so why I wonder did the SMC announce this tiny trial as if it has any significance? To divert attention away from the NICE decision, and they have succeeded!

Makes me think of a strategy known charmingly in UK politics as a 'dead cat', the idea being that if you don't like the direction a conversation is taking, you throw a dead cat on the table and everyone starts talking about the dead cat instead. Sorry, it's a really horrible analogy, but it says something about the people who deploy the strategy. If you can spot it being used, you weaken its power.

Edit: Just to make it clear to my fellow cat lovers, this is just a metaphor. No cats were harmed.

But the other main result of the programme - which is a bigger deal - is that more people I meet will have heard of ME thanks to that, and people that already know about it will have a better idea of what it's actually like, because of all those wonderful people that phoned in and honestly described their experience. A very well done to them. They spent their precious energy on doing that. I know that would have wiped me out. I'm grateful to them.

Yes, this was brilliant work, and would have cost them greatly. Thank you so much, callers!

 

[Jenny TipsforME]

I definitely agree this is a dead cat and we fall for it each time! @SamanthaJ

If we had the energy and organisational prowess it would even be worth pre-preparing the dead cat response press release when ME charities prepare positive press releases (the topics are fairly predictable). The dead cat is almost always the same week...

It's also particularly an issue with search engines/algorithms as our interpretation of it as nonsense will be lost on the bots. They will simply pick up lots of people talking about a topic with strong emotive words and decide it is important => ranked highly on the internet.

NICE is much bigger and better news and UK press coverage is improving. Don't talk about: (actually in this case that emoticon could be code for the annoying trial to totally muddle the bots!)

 

[Mrs Sowester]

Did transcripts or recordings ever get posted for all these recent radio 4 bits? They normally seem to appear, but I've not spotted them yet (I've not listened to them myself).

I've looked, but they don't seem to do them anymore - or if they do I'm not looking in the right place.

 

[Esther12]

I got sent this 10 minute recording of Crawley's interview from the Today programme, and am posting here.

[I'll post a link in the Today programme thread too, when I find it].

If anyone else has recordings of this stuff, it would be good to make that publicly available.

 

[Countrygirl]

I got sent this 10 minute recording of Crawley's interview from the Today programme, and am posting here.

[I'll post a link in the Today programme thread too, when I find it].

If anyone else has recordings of this stuff, it would be good to make that publicly available.

I receive the message 'item missing' when I ;click onto it to play

 

[Sbag]

I got sent this 10 minute recording of Crawley's interview from the Today programme, and am posting here.

[I'll post a link in the Today programme thread too, when I find it].

If anyone else has recordings of this stuff, it would be good to make that publicly available.

I sent a link to the programme to someone and just clicking on it again I still get the whole...

 

[Solstice]

I definitely agree this is a dead cat and we fall for it each time! @SamanthaJ

If we had the energy and organisational prowess it would even be worth pre-preparing the dead cat response press release when ME charities prepare positive press releases (the topics are fairly predictable). The dead cat is almost always the same week...

It's also particularly an issue with search engines/algorithms as our interpretation of it as nonsense will be lost on the bots. They will simply pick up lots of people talking about a topic with strong emotive words and decide it is important => ranked highly on the internet.

NICE is much bigger and better news and UK press coverage is improving. Don't talk about: (actually in this case that emoticon could be code for the annoying trial to totally muddle the bots!)

So the better strategy would be for us to big up the NICE decision and ignore the LP-bullshit untill it get's scientifically disseminated?

 

[Chrisb]

I think it would be wholly wrong to believe that the best tactical approach would be to ignore the SMILE trial, as some have suggested. This is exactly what its authors should wish for. One could almost hear Michael Sharpe squirming with embarrassment at having to write in support of it. Always do what your opponent least wants.

It was a major error by the BBC to alter the You and Yours programme to include the piece by Crawley. It seems to have been a greater error by whoever exerted the pressure which led to the changes being made. The only protagonist with an interest in keeping this story alive should be Parker, but it is hard to imagine that he has particular influence on BBC decisions.

This is an area where the BPS school should be open to ridicule. Their defences to criticism of the results of this trial must be weak. Apply the pressure and make them invest resources in defending the position, or make them abandon it. The options look equally bad for them.

Whoever instructed the You and Yours production team to make changes ought to be made to feel vulnerable. The BBC has given the impression that it has bowed unnecessarily to outside pressure. It is not a good luck for the organisation.

Every opportunity ought to be taken of broadcasting the finding that complete nonsense is more effective than the BPS proponents' "proven" therapy.