Science Media Centre with Holgate/Crawley/McCrone - more anti-patient prejudice? (FITNET)

[Yogi]

And here is the link again for those who have not yet complained:

https://ssl.bbc.co.uk/complaints/forms/?lang=en&reset=&uid=965457062

There is an option to select you live abroad, so do not assume that just because you are not in the UK that you cannot complain to the BBC. It seems you can.

Thanks anyone that can should complain.

http://www.bbc.co.uk/news/health-37822068

The key points that should be mentioned on the BBC new story is


1. It was severely biased and read as an advert. It is rare to have such a media blitz for a trial launch which has not found anything.
2. James Gallagher had a significant conflict of interest as he is advisor to SMC who did the media PR for this trial. Incidentally Simon Wessely is also a trustee of SMC and given the controversy with ME and PACE trial etc further steps should have been taken to avoid bias. He should have declared this or removed himself from this news article
http://www.sciencemediacentre.org/about-us/governance/
3. No opposing argument from the other side was offered. Instead the opposing view was accepted from Esther Crawley at face value.
4. No balance in this article as the misleading claims of the PACE trial were not referred to and that harassment was a narrative created by the SMC and no evidence of this in the recent court case. James Gallagher of SMC wrote this also.
http://www.bbc.co.uk/news/health-14883651

 

[eafw]

I've had a response from the BBC following my complaint.

...

Kind Regards

BBC Complaints Team

translation: Kind Regards (hahaha) The Science Media Centre

 

[Yogi]

Did anyone take a copy of the original BBC article?

It appears to have changed but have not explained which bit they changed and updated.

Spotted this:

But the MEAction Network said: "Time and again, research has shown that graded exercise and cognitive behavioral therapy are not effective treatments for those suffering from ME

"The concept that ME can be improved with solely behavioural techniques is decades old, and frankly, an embarrassment to the nation's scientific and patient community."

 

[Cheesus]

@Yogi

I've just noticed that too, and I was wondering if I was losing my mind because I could have sworn it wasn't there before. I am pleased someone else noticed it!

 

[Yogi]

@Yogi

I've just noticed that too, and I was wondering if I was losing my mind because I could have sworn it wasn't there before. I am pleased someone else noticed it!

Came out yesterday on 2nd.

http://www.meaction.net/2016/11/02/...al&utm_source=twitter.com&utm_campaign=buffer

That shifty bugger James Gallagher should explain if he has edited it. It means they have listened. However hardly anyone goes back and re-reads an article unless they have a special interest and therefore the damage was done on Monday.

Your BBC response is nonsense and you should follow up. This also means we do have a legitimate right for an apology given they have made some changes but 1 day late when all the damage had been done.

An appropriate apology and a minimum acceptable for our community should be a three part documentary like the one BBC had on Lancet's other 2011 paper by Macchiariani two weeks ago.!!!!!!!!

http://forums.phoenixrising.me/inde...ole-in-macchiarini-scandal.42898/#post-778676

 

[AndyPR]

Could try https://archive.org/web/, stick the BBC URL in and the select the day that you want to check the versions of the page for.

 

[Jan]

So there will be no record of adverse events then - I expect this to be spun as no evidence of harm from FITNET. Extrapolating, a patient could become bed bound and it doesn't need to be reported. (Image from a post on the IiME Facebook group).
View attachment 18064

From page 22 of http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf

I'm not sure what this means, are they saying that they will not record these adverse events or that they will not notify the sponser? Are these two different things?

Did you see they are quoting the PACE trial?


There is good evidence
that CBT and GET are moderately effective in
adults with CFS/ME. Four systematic reviews have shown that CBT and GET are
moderately effective in improving function and reducing fatigue

In particular, the
PACE trial showed that both CBT and GET were more effective than specialist medical care
or specialist medical care plus
adaptive
pacing
therapy (a form of activity management that
does not routinely increase activity but uses the envelope theory (patients
work within their

 

[Yogi]

Could try https://archive.org/web/, stick the BBC URL in and the select the day that you want to check the versions of the page for.

Thanks

Here is November 1

https://web.archive.org/web/20161101014733/http://www.bbc.co.uk/news/health-37822068

The MEAction bit is the only change.

P.S. @AndyPR how does this work? did someone put that link into the wayback machine or does it trawl all the net and capture pages automatically . If people need to do it then we need to make use of this and start capturing websites in relation to controversial stuff such as PACE trial so they cannot delete it and erase history.

 

[Sean]

I suggest that for all media articles/reports it is worth a few people saving the original first version of it, and any subsequent alterations, so we can hold the authors and publishers to account for any unmarked changes to the article/report, if required.

 

[Yogi]

This is the brainless bimbo who was cheer-leading all over the BBC that is allowing herself to be used by the BPS psychiatrists.

I wonder how much they paid her???? What does she get from this - Is it publicity that she is seeking?

Does she know about Crawley's background and links with the PACE authors. Does she even know about the PACE trial scandal and Tuller's expose??????

She is causing so much harm with her brainless cheer-leading for the Wessely school.

https://twitter.com/i/web/status/793494467365961728

She has further delights in store for kids on the childrens newsbeat prog.

https://twitter.com/i/web/status/793495589589753856

She is working full time with ME!!!!

https://twitter.com/i/web/status/787978449927405568

Here is her website.

http://www.beyond110.co.uk/


There is history between her and Mary Jane Willows of AYME. this picture was taken 25 weeks ago.

https://www.instagram.com/p/BFPSiq1KNBu/?taken-by=beyond_110


Oh well at least Simon Wessely likes her and her comment that he RT'd it

https://twitter.com/i/web/status/793334389384028160

We should educate her on how she is harming so many children with her ill-informed cheerleading and inform her of the BPS school propaganda and the PACE scandal.

 

[Yogi]

Stuart Jones likes FITNET and Esther Crawley.

https://twitter.com/i/web/status/793371773609844736

Simon Wessely retweeted Stuart Jones tweet.

All the crooks hang out together

See history of Stuart Jones who was found guilty

http://forums.phoenixrising.me/index.php?threads/jonas-found-guilty.13786/page-3#post-782299

 

[Countrygirl]

@Yogi

I've just noticed that too, and I was wondering if I was losing my mind because I could have sworn it wasn't there before. I am pleased someone else noticed it!

MEAction's press release which he has quoted only came out either yesterday or today.

 

[eafw]

What does she get from this Is it publicity that she is seeking

Sadly there are people out there who think that a diagnosis of CFS/ME is "cool and important", and their recovery (from whatever it was they had) is down to their amazing self-empowerment through positive thoughts, quinoa and hip instagram pictures. It's shallow and ridiculous and harmless enough if we could ignore her - but the media like to use people like that, suits their purpose, and ends up as more myths propagated against the rest of us.

 

[AndyPR]

P.S. @AndyPR how does this work? did someone put that link into the wayback machine or does it trawl all the net and capture pages automatically . If people need to do it then we need to make use of this and start capturing websites in relation to controversial stuff such as PACE trial so they cannot delete it and erase history.

Yes, it trawls it automatically but probably focusses on major sites only, can't imagine it could possibly save multiple versions of the entire internet everyday

 

[Yogi]

Sadly there are people out there who think that a diagnosis of CFS/ME is "cool and important", and their recovery (from whatever it was they had) is down to their amazing self-empowerment through positive thoughts, quinoa and hip instagram pictures. It's shallow and ridiculous and harmless enough if we could ignore her - but the media like to use people like that, suits their purpose, and ends up as more myths propagated against the rest of us.

She does not have CFS/ME. I would not judge or question anyone about this even if they had their own blog and how they recovered.

However she has gone on a publicity stunt across R4, Victoria Derbyshire, BBC News, Newsbeat with the Wessely school and she is fair game to be questioned now and challenged.

 

[Esther12]

This is the brainless bimbo who was cheer-leading all over the BBC that is allowing herself to be used by the BPS psychiatrists.

I wonder how much they paid her???? What does she get from this - Is it publicity that she is seeking?

Does she know about Crawley's background and links with the PACE authors. Does she even know about the PACE trial scandal and Tuller's expose??????

She is causing so much harm with her brainless cheer-leading for the Wessely school.

It's not fair to criticise her like that.

Lots of patients happen to improve while they're doing some treatment or other with no real evidence base, and then excitedly want to tell others about it. That's really normal. In this case the young person is being advised by a researcher and patient charity that it would be good to speak about their experience. So many of us would do them same as her if we were in that situation.

Just because we know the problems with it doesn't mean it's fair to expect her to. People like Crawley and Mary Jane Willow should know better, are in positions of authority, and deserve to be criticised - this random patient should be treated kindly imo.

 

[Yogi]

It's not fair to criticise her like that.

Lots of patients happen to improve while they're doing some treatment or other with no real evidence base, and then excitedly want to tell others about it. That's really normal. In this case the young person is being advised by a researcher and patient charity that it would be good to speak about their experience. So many of us would do them same as her if we were in that situation.

Just because we know the problems with it doesn't mean it's fair to expect her to. People like Crawley and Mary Jane Willow should no better, are in positions of authority, and deserve to be criticised - this random patient should be treated kindly imo.

Agreed if she just kept herself to the blog.

But as I said in my previous post she is not just doing that but has gone on a media blitz with the EC and the FITNET trial on mainstream BBC news with worldwide transmission. Given all the well documented problems she should be aware of the issues and that patients are nearly unanimously against CBT/GET.

She has made it appear on mainstream media that patients are for now for CBT/GET and one can be cured or treated with it. It is impossible to get the other side of the story on mainstream media as you know.

She is a big girl at 26 and should be aware of all the controversy over this. She is not a minor.

She went on national TV and news and with that she has responsibility and it is fair.

 

[Stewart]

This is the brainless bimbo who was cheer-leading all over the BBC that is allowing herself to be used by the BPS psychiatrists.

Agreed if she just kept herself to the blog.

But as I said in my previous post she is not just doing that but has gone on a media blitz with the EC and the FITNET trial on mainstream BBC news with worldwide transmission. Given all the well documented problems she should be aware of the issues and that patients are nearly unanimously against CBT/GET.

She has made it appear on mainstream media that patients are for now for CBT/GET and one can be cured or treated with it. It is impossible to get the other side of the story on mainstream media as you know.

She is a big girl at 26 and should be aware of all the controversy over this. She is not a minor.

She went on national TV and news and with that she has responsibility and it is fair.

I understand your anger, but I think you're being unfair (and quite rude) here. According to her own account of her illness she was only diagnosed with CFS about 18 months ago. Many people's experience of ME is that their symptoms wax and wain over time, and she hasn't been ill long enough to learn whether this is true for her. It's understandable that she would attribute any improvement she's experienced to the CBT course that she must have completed fairly recently. She might feel very differently about the effectiveness of CBT in a year or two's time.

But of course, that's exactly why the SMC put her forwards as an example. She's only recently been diagnosed - so she doesn't have long term experience (or knowledge of the illness) to draw upon - and she's only recently completed a course of CBT, so she's at the point where she's most likely to believe the treatment has been effective (regardless of whether it's had any objectively measurable impact). There's no point getting angry with her - at this point in time, she believes (rightly or wrongly) that CBT has helped her, and Crawley is exploiting both her recent personal experience and her wider inexperience of ME/CFS to further the SMC agenda.

She really shouldn't be considered 'fair game' - she's a fairly new fellow sufferer who quite understandably doesn't fully appreciate the controversy around CBT or the damage it can do. Attacking her isn't in any way 'fair' or constructive. It'd be more useful to direct your outrage at the puppeteers, rather than the people they're using to achieve their goals.

 

[Barry53]

That shifty bugger James Gallagher should explain if he has edited it. It means they have listened. However hardly anyone goes back and re-reads an article unless they have a special interest and therefore the damage was done on Monday.

I think it means that for any such article, we should capture the content (together with capture date/time and link), not just the link. If the content changes then we capture the revision in the same way, without overwriting original versions. We then get ourselves an audit trail of any such published articles, news items, etc.

 

[Large Donner]

Lizzie Horgan @beyond_110
Thanks for having me @BBCNewsbeat.SUPER opportunity to raise awareness of #cfs (plus putting on headphones has never felt quite so exciting 4:51 PM - 1 Nov 2016

• 
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Follow
Lizzie Horgan @beyond_110
Digging out the Oyster. Back to full time work tomorrow. Oh-me-oh-so-freaking-excited-my. #mondaymonday

Whatever she had no one speaks like that, it all sounds remarkably staged especially taking into account the Wessely follow up tweet.

What does she mean about putting on headphones and what does she do for a living? Does she have a background in media or drama?

This all sounds like what older or middle aged people think young people would say or something that's been scripted for news now that its admitted news media has no obligation to tell the truth and also that governments have given themselves permission to put out features and portray them as organic news without telling the public they are behind them.