FITNET-NHS Esther Crawley - 5th protocol out now

[lycaena]

and they still refer to "boom and bust" even they couldn't find such a behaviour at the magenta-trial

 

[daftasabrush]

Wait, CBT-F? Is this a new name?

Are they now attempting to separate CBT for CFS from CFS, and what does that mean for patients?

 

[Cheshire]

found this in a pdf relating to 9th World Congress of Behavioural and Cognitive therapies (Berlin July 17-20 2019).

What strikes me is that their model for depression is as simplistic and unevidence based as their CFS one.
And how they confuse causes with consequences.

This is ridiculous. How can that be taken seriously?

 

[Barry]

This is ridiculous. How can that be taken seriously?

BS baffles brains.

 

[Sly Saint]

another one! 19 Dec 2019
Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to activity management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME): amendment to the published protocol
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3895-1

eta: seems to be revised target recruitment to 314 children and 6 month extension to Oct 2021

We will, therefore, recruit 314 children and recruitment will finish on 31 October 2020. Follow up will finish on 31 October 2021.

 

[Amw66]

another one! 19 Dec 2019
Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to activity management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME): amendment to the published protocol
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3895-1

eta: seems to be revised target recruitment to 314 children and 6 month extension to Oct 2021

Do they not take a hint.

 

[chrisb]

How does the funding for this work? Is there a magic money tree within the NIHR garden providing endless funding for Bristol research? What is the anticipated cost? Why was the need for this not anticipated at the outset? What is the likely cost-effectiveness of the additional six months? Who makes these decisions?

 

[dave30th]

Nice haul for someone who had claimed to have left the field because of all the "harassment".

I don't think she ever claimed that. She touted her heroic decision to NOT leave the field because of her great concern for all the poor children who needed her to remain dedicated.

 

[Adrian]

another one! 19 Dec 2019
Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to activity management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME): amendment to the published protocol
https://trialsjournal.biomedcentral.com/articles/10.1186/s13063-019-3895-1

eta: seems to be revised target recruitment to 314 children and 6 month extension to Oct 2021

This is perhaps an interesting comment within the amendment

We considered the issue of co-morbid disorders. On 2 October 2018, we investigated the rate of co-morbid mood disorders in FITNET-NHS participants at baseline. This was higher than our original estimates as the rate of co-morbid mood disorders was 40% (compared to 30% in our original estimates). With the revised sample size target of 314 there will be approximately 106 participants with co-morbid mood disorders (53 in each treatment group). This will give 53% power at 5% significance to detect a 0.4-SD difference on the SF-36-PFS between treatment groups within this co-morbid subgroup.

So they are recruiting more children with co-morbid mood disorders than expected. Which could follow though to their overall result.

 

[Amw66]

Another ship setting sail .......

 

[MEMarge]

Funding is from NIHR. EC seems to have a never-ending pot available.

"This trial has been designed and delivered in collaboration with the Bristol Randomised Trials Collaboration (a UKCRC Registered Clinical Trials Unit) which as part of the Bristol Trials Centre receives NIHR CTU support funding. This project is independent research-funded by the NIHR HTA 14/192/109 and supported by the NIHR (NIHR Senior Research Fellowship: Professor Esther Crawley, SRF-2013-06-013)."

I think that her ability to access this ££££ is an important reason why Bristol defend her.

 

[MEMarge]

I guess the good news from this is that the "Harms from EC and GET message" is getting through to parents, so their study recruitment has slowed.

 

[rvallee]

Funding is from NIHR. EC seems to have a never-ending pot available.

"This trial has been designed and delivered in collaboration with the Bristol Randomised Trials Collaboration (a UKCRC Registered Clinical Trials Unit) which as part of the Bristol Trials Centre receives NIHR CTU support funding. This project is independent research-funded by the NIHR HTA 14/192/109 and supported by the NIHR (NIHR Senior Research Fellowship: Professor Esther Crawley, SRF-2013-06-013)."

I think that her ability to access this ££££ is an important reason why Bristol defend her.

Despite producing nothing of any value whatsoever, in fact mostly doing the same thing over and over again. It's all about the fake savings from BPS justifications to deny medical care to some patient populations.

Funding incentives and priorities are completely screwed up, have almost no alignment with what sick people actually need.

 

[Snowdrop]

There are layers and layers of people involved in the bureaucracy of doling out the cash to individual grantees I think. And IMO the fact that they are not highly visible people there is no real accountablility. It's at least not clear to me where the buck stops in terms of who is responsible for funding crap.

There is an ability at NIHR and it's various arms to hide in relative anonymity. That's not to say that these things can't be found it's just not a usual practice to expose the structure.

As usual with me I'm inclined to think that shining a light on the process and people involved could yield some benefit in the form of exposing accountability.

 

[James Morris-Lent]

I don't think she ever claimed that. She touted her heroic decision to NOT leave the field because of her great concern for all the poor children who needed her to remain dedicated.

Obligatory copypasta:

What do you worry about at night? Some people worry about their careers, others worry about the end of the world. I worry about children who suffer because effective treatment is not available to them. I probably ought to worry about the starving millions or those that die because they cannot get vaccinated. But in the UK, there are children who suffer because they cannot get help for their CFS/ME, and this is something we really ought to be able to sort out.

 

[NelliePledge]

FITNET 5th Protocol sounds like some dystopian science fiction film.

 

[rvallee]

there are children who suffer because they cannot get help for their CFS/ME, and this is something we really ought to be able to sort out

 

[Sly Saint]

Article from over a year ago on a Polish site
New therapy for children suffering from chronic fatigue syndrome
"NHS (National Health Service) is testing a therapy that successfully treats two-thirds of children with chronic fatigue syndrome . This disease affects one in 50 children, it leads to mental health problems and backlog at school ."

Prof Crawley runs the FITNET-NHS test to see if it works and online consultation is cost effective for healthcare.

System trials in the Netherlands have shown that 63 percent of patients who were treated had no symptoms after six months, while only 8 percent recover without treatment.

"Children who come to my clinic have low levels of cortisol [** stress hormones **] in the morning, which is why they feel so terrible. If we change their sleep, we will also change the amount of cortisol. We don't do it with medication, but with our way it can work just as well, "says Professor Crawley

Mary-Jane Willows, from the Youth with Me Association, said, "This is a scandal to leave a child unrecognized and untreated. And the longer they struggle with this problem, the more sick they are. This process is extremely important, every day we have calls to parents who are desperate and want to start treating their children. "

https://translate.googleusercontent...czenia&usg=ALkJrhhrJs7T-iYn5pWvVhJkmUqpsD2MIQ

 

[Amw66]

if only life was so simple....

 

[Sly Saint]

had not seen this before:

FITNET-NHS
To investigate the effectiveness and cost-effectiveness of using FITNET-NHS (an online CBT programme) to treat paediatric Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) in the UK.

CACH Team: Prof. Esther Crawley, Dr. Emma Anderson, Mrs Manmita Rai, Dr. Roxanne Parslow.

Most UK children (aged between 11-17 years) with Chronic Fatigue Syndrome (CFS/ME) currently have no access to local specialist services for the treatment of CFS/ME. FITNET-NHS tests the delivery of specialist one-to-one home treatments via the Internet, bringing CFS/ME treatment to families across the UK without the need for travel. All children in the trial are offered one of two treatments from a specialist at the Bath Paediatric CFS/ME Service:

• FITNET-NHS, a Cognitive Behavioural Therapy (CBT) program - delivered online
• Activity Management - delivered via Skype

The study is funded by the NIHR HTA and the recruitment to the study is planned to be completed by October 2020.

there is also a video podcast with Dr Anderson about FITNET-NHS

http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/fitnet-nhs/