David Tuller: Trial By Error: FITNET-NHS Recruitment Ad Promotes ''Recovery''

presumably someone is paying this company?

eta: as an aside the Sussex and Kent ME Society link directly to the Bristol FITNET-NHS page from a link entitled Treatment for Children with ME/CFS

http://measussex.org.uk/links/

 

@Russell Fleming

 

https://twitter.com/user/status/1031918072544874496

 

I think there is value in evaluating this as a public relations effort to sustain the work by continued exposure. If GPs regularly hear about this research, no matter how bad it is, it helps maintain its status as valid research. Especially as most of them will never hear about the real research unless they specifically set out to look for it.

It's basically advertisement, keeping the brand alive not on its own merits but on the message that it wants to create. Advertisement works through repetition, in building an image. Doesn't matter if it's the same message being broadcast with slight differences, the intent is simply to build familiarity and increase the power of the brand.

It will age very badly as it is all recorded and will look horrible with hindsight. Until then they'll keep on knowingly hurting people.

 

https://twitter.com/user/status/1032385376516681735

 

@dave30th has written to Red Whale, so it may make sense to delay making a complaint to the Advertising Standards Agency until it is known if he has had a response.

His letter to the company (see http://www.virology.ws/2018/08/22/trial-by-error-my-letter-to-red-whale-gp-update/ ) is currently under discussion here under a separate thread. Not sure if there is a way to link directly, so here is the web address for that thread https://www.s4me.info/threads/david-tuller-trial-by-error-my-letter-to-red-whale-gp-update.5457/

 

Think I must be being a bit thick. Where is the ad?

 

Thank you @Trish .

 

You're not thick. The ad was sent to a GP, and then forwarded to me. I didn't want to forward the e-mail and didn't bother to cut-and-paste it in my post or letter, but then it was found on their site, as mentioned above.

 

Thank you .

 

They're linking directly to a Lightning Process practitioner too!

The way they've presented it there makes it look like they're claiming those recovery rates were for 4 years post randomisation... but their paper showed there was no significant difference between groups at LTFU: https://www.ncbi.nlm.nih.gov/pubmed/23669515

 

I've only just found time to catch up on this blog. It's a complicated topic to explain concisely, isn't it?

I thought I'd add another thing that could have been mentioned!.. the initial publicity push to recruit for the FITNET-NHS trial that the Science Media Centre had helped arrange included headlines like this from the BBC: "Landmark chronic fatigue trial could cure two-thirds". The article went on "A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use."

Trying to recruit participants with a media campaign like this is just absurd.

As we've been talking about Holgate recently, this quote from him is still pretty irritating:

"Prof Stephen Holgate, from the Medical Research Council, said: "CFS/ME is an important disabling condition"

"It has been chronically underfunded for years, patients deserve high quality research like this.""

The article was edited after complaints were made, but the original version is available here: https://web.archive.org/web/20161101014733/http://www.bbc.co.uk/news/health-37822068

 

I have been unable to find the video of the BBC Victoria Derbyshire show with Esther Crawley, Mary-Jane Willows, and Jane Colby but I found this transcript:


"It's a little-understood condition which can have devastating effects.
Chronic fatigue syndrome, also known as ME, is thought
to affect one in 50 children, leading to mental-health.
Those affected suffer from severe exhaustion and often struggle.

Now, a therapy that successfully treats two thirds of children
with chronic fatigue syndrome is being trialled for NHS use.
The trial will use a form of behavioural therapy

Let's talk now to Professor Esther Crawley in Bristol,
who is leading this trial, Mary-Jane Willows,
from the charity AYME, which supports young ME sufferers,
Lizzie Horgan, who was diagnosed last year with ME and has since been
able to return to work after receiving CBT treatment,

and Jane Colby, the executive director of Tymes Trust,
which helps young CFS sufferers, and who does not agree that this
is the right form of treatment for the condition."

Jane Colby complained to the BBC but without success. Info is available online but haven't dug it out.
I think the 'two thirds success' claim was repeated on all other BBC radio interviews (there were a few). I haven't revisited the Countess of Mar and MEAs complaints (I don't think AfME did anything).

I don't think the BBC ever retracted or clarified the claim.......and even if they did the damage is already done.

eta: duh I already had a better transcript on my pc
Victoria Derbyshire show BBC 2 Nov 1 2016 with Esther Crawley.doc

 

This was the interview Crawley did with Phil Hammond on his BBC Radio show:

20161105 Esther Crawley FITNET - BBC Radio Bristol.pdf

in it she says:
"So the evidence for Cognitive Behavioural Therapy and Graded Exercise Therapy is good, it’s good in adults; so there are quite a lot of trials in adults now that show that, if you’re an adult with Chronic Fatigue Syndrome, your best chance of getting better is Cognitive Behavioural Therapy and Graded Exercise Therapy. In children, there are about 5 trials that show that Cognitive Behavioural Therapy has a much better outcome for Chronic Fatigue Syndrome."

"We’ve reviewed all the world literature for recovery, and if you’re a child with Chronic Fatigue Syndrome, whichever method you choose, you have about a two-thirds chance of recovery at 6 months, with treatment, compared to a less than ten percent chance of recovery without treatment. So I’ll just say that again, two thirds at six months with treatment, compared to 10% without treatment."

so which review was that?

 

Surely its only the recovery rate at long term follow up that matters. ? Even if PACE and FITNETdutch had been flawless, the LFTU showed no benefit. Does Fiona Watt not know that?

LFTU studies ought to receive more prominence in journals than the original study.

 

Thanks for those examples @Sly Saint

No review that I've ever seen published.

It's just the initial results from FITNET isn't it? Are there any other trials that have such a divergent recovery rate? Seems pretty misleading to present those figures as a reflection of the world's literature.

 

Don't think this has been posted (I hadn't seen it before)
ECs Youtube promotion of FITNET (uploaded march 2018)

https://www.youtube.com/watch?v=Q4Bm-_wh7B4

comments are disabled (possibly chronically)


eta:
see also the F&Q page that might have been posted before
https://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/

 

And that FAQ continues to promote the seriously misleading TEDx talk from Crawley... even though TEDx have stopped people viewing it.