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

[Molly98]

You are right, but all I keep thinking with FitNet even with accessible raw data, it's a stitch up when the criteria for this study only requires 3 months fatigue. Many of these children will not even have M.E.

it is a stitch up @anniekim a massive stitch up by a power group with powerful contacts and this has the potential to continue the harm done to the ME community for many years to come and further ingrain their beliefs in the minds of the public and media

 

[anniekim]

Thanks Molly, sorry brainfoggy, didn't word the above well. I was thinking along the lines even with data accessible it would make zero difference when the criteria is 3 months fatigue and subjective measures for outcomes. I know it's a stitch up and feel so demoralised. And of course, there is the MAGENTA study too.

Edit: to add, reading the dissemination and outputs chapter above is utterly horrifying.

 

[Barry53]

You are right, but all I keep thinking with FitNet even with accessible raw data, it's a stitch up when the criteria for this study only requires 3 months fatigue. Many of these children will not even have M.E.

Yes, but that is the beauty of open peer review of data released with the results. Such data could be openly analysed by some of the greatest experts on the planet. Such flaws would be exposed, and more to the point, the researchers would know this to be part of the process.

FITNET, of course, will never abide to such a protocol, so the risks are extremely high it will go bad. I am talking about how I think it should be, which I'm certain is not going to apply to FITNET.

 

[anniekim]

Thanks Barry. But even if the data is not open, the criteria used is open for all to see, no? Therefore it will go bad whatever the manipulation with such broad criteria? Sorry very ill tonight and will have to stop now.

 

[Barry53]

Thanks Barry. But even if the data is not open, the criteria used is open for all to see, no? Therefore it will go bad whatever the manipulation with such broad criteria? Sorry very ill tonight and will have to stop now.

That's OK, hope you will be a bit recovered soon. I agree with you, with FITNET the combination of dodgy criteria that is available for all to see, but lack of open data to positively expose flawed results based on it, means flimflam will likely prevail.

 

[slysaint]

Emperors new clothes again; I'm bewildered that no scientist, journalist anyone has said the obvious that FITNET, MAGENTA, PACE are all CBT/GET therapies which have been NICEs standard treatment for ME/CFS for ages. It's nothing new.
Have the number of people with ME declined substantially?........No.
How many times do you need to try and bash a square peg into a round hole before conceding it doesn't work?
Unless of course you start shaving off the corners.

 

[UKmum]

Don't forget the SMILE trial. I have been unable to find any results from it though- has anyone seen them?
http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile.html

 

[Jan]

Emperors new clothes again; I'm bewildered that no scientist, journalist anyone has said the obvious that FITNET, MAGENTA, PACE are all CBT/GET therapies which have been NICEs standard treatment for ME/CFS for ages. It's nothing new.
Have the number of people with ME declined substantially?........No.
How many times do you need to try and bash a square peg into a round hole before conceding it doesn't work?
Unless of course you start shaving off the corners.

Precisely, the response from the ME world should have been it's been tried on adults in PACE and failed, point press in the dircetion of David Tuller's piece and every article published re PACE reanalysis.

 

[Jan]

All of the headlines from this week are based on just 60 odd kids in one trial! The most scandalous thing the study showed was that face to face CBT doesn't work. This is all the UK offers and it doesn't work!

 

[Esther12]

Don't forget the SMILE trial. I have been unable to find any results from it though- has anyone seen them?
http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile.html

Not out. They seem delayed. Surely SMILE is going to be embarrassing regardless of the results!

 

[Wildcat]

.
If SMILE Trial results had been published you can be sure that Phil Parker would be making a hell of a publicity seeking noise about it .... but only if the results were positive of course.
.

 

[slysaint]

Don't forget the SMILE trial. I have been unable to find any results from it though- has anyone seen them?
http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/smile.html

I didn't forget it but this was using the Lightning Process; interesting entry on Wikipedia mentions SMILE
https://en.wikipedia.org/wiki/The_Lightning_Process

 

[soti]

By the way, here's what the BBC responded to my complaint about this article (I'm sure anyone else complaining got something the same or similar).

Many thanks for getting in touch about BBC News.


Whilst we’re disappointed to learn that you were unhappy with our coverage, we'd clarify that this is the largest clinical trial of an intervention in Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) and is being directly funded by the National Institute for Health Research (the research wing of the National Health Service). This makes it a significant story.


Our coverage has been a mix of why the researchers have decided to undertake the trial and the personal experiences of patients (particularly children) with the disease. The Association of Young People with ME – a charity that represents children with the disease – and the UK’s Medical Research Council both say there has been a lack of attention given to CFS / ME and that this trial is needed.


The BBC cannot ignore stories like this and has reported a broad range of CFS / ME research - including striving to find a biological cause in www.bbc.co.uk/news/health-31644618; the difficulties along the way in www.bbc.co.uk/news/health-15017660; the threats sent to people researching the field in www.bbc.co.uk/news/science-environment-14326514; and why discussing the disease has become so toxic in www.bbc.co.uk/news/health-14883651.


We hope our reply here helps to clarify our approach. Many thanks once again for taking the time to get in touch.

Yeah no, but thanks anyway.

 

[Ysabelle-S]

The BBC has ties to the SMC. So do ITV. I wouldn't expect anything from them.

http://www.sciencemediacentre.org/about-us/governance/

 

[Griffin]

Six years of FITNet is a disaster. The constant repetitive CBT/GET solution (treatment) claims will only force home PACE and NICE mis-direction. What will need to happen in the US to take the UK from this "misguided" path?

 

[AndyPR]

Response to FITNET from WAMES (Welsh Association of ME & CFS Support)

Major charities and individuals have joined WAMES in expressing concern about the nature of the FITNET trial being run by Prof Esther Crawley, the lack of objective analysis in the media coverage and the questionable results from the original Dutch trial.

WAMES does not support the FITNET trial. We do not believe it is a good use of public money. Patient surveys and poor results from the PACE trial raise questions about the effectiveness (and safety) of CBT and GET in adults. The Dutch trial in children with fatigue did not produce better long term results than usual care and it is unclear whether all participants had strictly defined ME.

WAMES recommends caution for young people with ME participating in the ‘intensive activities’ that the FITNET trial requires, as post-exertional exacerbation of symptoms, is the key characteristic of ME.

http://wames.org.uk/cms-english/2016/11/fitnet-trial-reporting-is-misleading/

 

[AndyPR]

Six years of FITNet is a disaster. The constant repetitive CBT/GET solution (treatment) claims will only force home PACE and NICE mis-direction. What will need to happen in the US to take the UK from this "misguided" path?

Time to pass. Biomarkers and treatments will come out of the research being done in the US and elsewhere but it all takes time. Money, in terms of funding, can make that time pass more quickly to a certain extent but it can only do so much.

 

[Heart Face]

Esther Crawley is on her friend Phil Hammonds show...conflict of interest? Advertising your colleagues research? Well your own really I suppose as the Guinea pigs will be from his clinic....

Esther Crawley appearing on BBC Radio Bristol
Saturday morning 9-10am

http://www.bbc.co.uk/radiobristol
Contact show in air: Studio: 0345 900 5 949
Text: 81333 and start the message with "Bristol”
Dr Phil Hammond @drphilhammond
On my @bbcrb show 9-10 Sat
Prof Esther Crawley
#CFS/ME
#FITNET
Dr Nicola Minaur
@NorthBristolNHS
#Ask3Questions
Shirley Kelly
@AriaLingerie

 

[HowToEscape?]

I would do a screenshot of the original if I knew how to. One headline was at 7 a.m. and the other at 8 a.m. So why did they change it? Can't have been the patients I feel sure - - was 'cure' judged by someone to be a step too far?
.....

Alt-printscrn, paste into MSPaint, save as jpeg. There are other ways, that one's fast, and free. Macs have similar functionality w different keystrokes.

 

[Marky90]

By the way, here's what the BBC responded to my complaint about this article (I'm sure anyone else complaining got something the same or similar).



Yeah no, but thanks anyway.

Bla bla bla;if youre so interested, read the follow-up, u fools