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

[soti]

Make sure you make a complaint. Their coverage has been incredibly biased. If they wanted a non-biased debate they would have had Jonathan Edwards or Charles Shepherd on at the same time as Crawley. They should have also given more space to opposing views in their articles. See my earlier post for the link to make a complaint.

Will do! And note the complaint guidelines...

In order to use your licence fee proportionately we do not investigate minor, misconceived, hypothetical, repetitious or otherwise vexatious complaints which have not suggested evidence of a breach of standards, or are gratuitously abusive or offensive.

 

[Wildcat]

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@Valentijn Can you give the link to the facebook page please.

We don't know which facebook page you have quoted from .. Thanks.
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[Snow Leopard]

I noticed one comment in the process of it being deleted on the Facebook page:

Yes, comments like that are not helpful. Stating the facts, eg that the claims of 60% 'recovery' due to treatment is spin (at long term follow up almost that same amount who were randomised to the control group also met the same 'recovery' criteria. Also stating that they are not using objective measures and studies show that subjective measures in unblinded studies are highly susceptible to bias.

 

[Beagle]

When trying to contact reporters involved, try to keep your responses brief, and point them to factual sources (not ranty threads). For example, discussions of what the recovery criteria actually means, and actual rates from PACE, not personal attacks on the BPS crowd.

Has anyone put together a page with all the sources and discussions in-place? Something to point reporters to, or use as a template letter/email?

 

[JoanDublin]

A few tweets from AYME. No surprise there I guess

 

[Chrisb]

On reflection the BBC interview seemed to take a very unusual form. Over all the years I have listened I had come to the view that the normal format for such pieces was to have someone state their case and then have the balancing piece seemingly in response. On this occasion the balancing piece came first and, although by a perfectly good advocate of the contrary position, it had lost all its force by the end.

You cannot be expected to adequately counter views which have not yet been stated. Does anyone else have a view as to how common this type of format is? Perhaps I have just not been paying sufficient attention.

 

[trishrhymes]

I believe this is the Dutch long term follow up
https://www.ncbi.nlm.nih.gov/pubmed/23669515

I've just spent the last half hour trying to get my head around this Dutch study and concluded it's so full of holes it's like a bloody sieve!

For one thing, they play the PACE trick of highlighting the fact that the recovery rate was maintained at long term follow up and play down the fact that the usual care (UC) group had caught up by then.

And towards the end of the paper they throw in this curve ball:

" Our original pragmatic study design enabled us to demonstrate the value of FITNET relative to currently locally available therapies. Availability, of course, is defined locally and differs from region to region, even in a small country such as The Netherlands. This design meant that we could and cannot provide detailed data about the specific interventions in the UC group because the quality and quantity of treatments (mostly CBT) differed according to local availability, and adolescents often combined CBT with other treatments such as graded exercise. "

In other words they haven't a bloody clue what the UC group were doing. And didn't ask! For all they know, they might have been put on an aggressive GET program and taken a couple of years to recover!

A bit like doing a headache study of paracetamol, and letting the 'control' group take anything else and not asking them what they'd taken!

I despair!

 

[Countrygirl]

In these paediatric studies I never see mentioned the highly relevant fact quoted by Dr CS years ago that people under 18 who develop ME as a rule naturally recover in 4.6 years. How do they factor this into their research?

 

[user9876]

On reflection the BBC interview seemed to take a very unusual form. Over all the years I have listened I had come to the view that the normal format for such pieces was to have someone state their case and then have the balancing piece seemingly in response. On this occasion the balancing piece came first and, although by a perfectly good advocate of the contrary position, it had lost all its force by the end.

You cannot be expected to adequately counter views which have not yet been stated. Does anyone else have a view as to how common this type of format is? Perhaps I have just not been paying sufficient attention.

I complained about the today show when they did the same with the same with the PACE ltfu and interviewed Sharpe but they didn't care about balance then either.

 

[Wildcat]

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Via @Valerie Eliot Smith Facebook (written by Valerie Eliot Smith):

https://www.facebook.com/valerie.eliotsmith?pnref=story

"This is the source (unsurprisingly) of this morning's propaganda stunt on the impending FITNET trial for children with "CFS/ME", led by Esther Crawley at the University of Bristol. Clearly, there was a recent briefing which led to this morning's blanket coverage. Esther Crawley and Trudie Chalder appear to be the psychiatric lobby's natural successors to Peter White and Simon Wessely. This is the new generation's way of fighting back against their recent setback with the controversial PACE Trial data release.
If anyone was in any doubt about the safety of the UK's CMRC (CFS/ME Research Collaborative) and their promotion of the prospective MEGA trial, note that Stephen Holgate, chair of the CMRC, spoke at the SMC's briefing on FITNET, alongside Esther Crawley http://www.sciencemediacentre.org/testing-a-controversial-…/
NB. It's important to note that, in the absence of a serious proactive and reactive media strategy which is adopted by the major ME charities and groups, this will continue to happen.

http://www.sciencemediacentre.org/testing-a-controversial-treatment-for-cfsme-in-children/
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[Sidereal]

Many of 'our' charities are too busy supporting the CMRC.

 

[AndyPR]

ME Association have a response up http://www.meassociation.org.uk/201...nline-cbt-trial-for-children-1-november-2016/

In particular, in relation to GET, we have stated that NICE should withdraw their recommendation that everyone with mild to moderate ME/CFS should be offered GET.

We also believe that there should not be any further clinical trials of this type of activity management while patient evidence consistently indicates that over 50% of people with ME/CFS (including children and adolescents in the MEA report) report that GET has made their condition worse.

As noted in all the BBC press reports this morning, appropriate management of sleep, pain and activity (in the form of pacing – as was referred to by the young person who was interviewed for the BBC Radio 4 Today programme) are three key aspects of ME/CFS management.

And when done properly, these can all can be important factors in aiding any natural improvement to take place.

But they are not ‘cures’ for ME/CFS and do not help everyone to improve.

[More at link]

 

[Sean]

There are no objective tests included in the protocol

Surprise!

Pretty clear that the main thing they learned from PACE was not to use objective measures, especially for physical capacity.

 

[Hilary]

Isn't (one of) the fundamental problems with this sort of junk science, the use of completely inadequate clinical criteria combined with the bandying around and interchangeability of the terms CFS and CFS/ME, when the patients being studied actually have chronic fatigue (of unknown origin but unlimited possibilities). In my experience, UK doctors can be much too quick to slap the CFS label on anyone who has unidentified fatigue - and to compound this they think it means the same as ME - or ME/CFS. For some it is little more than a wastebasket diagnosis.

 

[A.B.]

Many of 'our' charities are too busy supporting the CMRC.

Maybe this time the psychobabblers will finally start being reasonable?

The only way to deal with the BPS model is zero tollerance and zero collaboration. If all charities and patients united against it, then it would die very quickly...

 

[Hilary]

Essentially, she likes to compare apples to oranges to support her conclusions. I suppose to a BPS practitioner, everyone's a fruit and no further detail is desired

Well if we're the fruit, they're the fruitcakes

 

[AndyPR]

Comments are possible on the BBC article, did we know this?

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

 

[AndyPR]

And the Guardian have a Facebook post about it now, so obviously commenting will be possible on it.

https://www.facebook.com/theguardian/posts/10154687182326323

 

[Cheshire]

Could have posted it in the Joke of the day section...

https://twitter.com/i/web/status/793345950043500544

 

[Marky90]

This makes me so frigging furious!!!

What kind of incompetent delusional anti-critical fool excuse of a journalist is this?

"A therapy that cures two thirds..."??

You gotta be kidding me. Crawley and Holgate: Turds of their generation. They should rename it: Landmark chronic fatigue trial could cure two turds. <-