FITNET-NHS Esther Crawley - 5th protocol out now

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

 

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?

 

BS baffles brains.

 

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.

 

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?

 

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.

 

Another ship setting sail .......

 

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.

 

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.

 

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.

 

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.

 

Obligatory copypasta:

 

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 ."

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

 

if only life was so simple....

 

had not seen this before:

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/