FITNET-NHS Esther Crawley - 5th protocol out now

Looks like that's a replacement of the old page, which linked to Esther Crawley's TEDx talk even after it had been blocked by TEDx for failing to be up to its standards.

If you try to go to the old web address it moves you to the new page: https://web.archive.org/web/2018063...entdisability/chronic-fatigue/fitnet-nhs/faq/

 

FITNET-NHS Study

Q. What level of funding has been provided for this study?

A. The HTA as agreed to fund this study at a cost of £994,430.


Looks like they are planning to do more "trials" on the Lightning Process as well:

http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/lightning-process/

"The SMILE trial1,2,3 demonstrated that adolescents with CFS/ME were more likely to improve with LPplus specialist medical care (SMC) compared to SMC alone. We need greater understanding of the LP and how it may benefit patients, looking for potential mechanisms of action that may improve SMC."

Aaaaaagh!!! @dave30th

 

£994,430......... Not even simply wasted but actively invested in making the lives of young people already disadvantaged by a great deal of suffering & discrimination worse.

I'd rather see someone spend that kind of dough on shoes or handbags or something. At least it would bring someone fleeting joy and wouldn't make patients' lives worse.

 

Funding by:

https://www.linburytrust.org.uk/?page_id=99

Apparently they generally fund projects in the arts. There must have been some Olympic level schmoozing to acquire this money. Or somebody is BFF's with someone there. It seems to not be in their usual stream of projects.

 

New grants marked for September [edited as a different page made it clear these were for Sept 2019: http://www.bristol.ac.uk/academic-child-health/grants/academic-year-2019-2020/]:

http://www.bristol.ac.uk/academic-child-health/grants/

 

I wish they would stop saying "Specialist Medical Care", it's highly misleading. There is no specialist treatment for ME. It's just a way of framing their bogus treatments as seeming more effective.

 

what are the implications for this and any other GET trial now with new guidelines?

 

and what about further use of The Lightning Process ?

"Lightning Process


This project seeks to define and describe the Lightning Process® (a commercially-available complementary intervention) compared to specialist medical care for paediatric CFS/ME, with a view to identifying potential mechanisms of action, and seek funding for a full-scale trial.

Research Team: Dr Emma Anderson, Dr Lucy Beasant, Dr Rebecca Barnes, Dr Nicola Mills, Professor Esther Crawley

The Lightning Process®(LP) is a commercially-available complementary intervention based on Neurolinguistic Programming, Life coaching and Osteopathy. The SMILE trial1,2,3 demonstrated that adolescents with CFS/ME were more likely to improve with LPplus specialist medical care (SMC) compared to SMC alone. We need greater understanding of the LP and how it may benefit patients, looking for potential mechanisms of action that may improve SMC. The aims of this project are to:

• Define LP in the context of established/evidence-based therapies (e.g. CBT/behavioural therapies)
• Analyse practitioner-patient interactions within LP sessions, seeking distinctiveness from SMC sessions (using SMILE Trial recordings)
• Apply for a full-scale trial of LP vs CBT for paediatric CFS/ME

This work is funded by the Linbury Trust."
Centre for Academic Child Health
http://www.bristol.ac.uk/academic-child-health/research/research/cfsme/lightning-process/
@dave30th

 

Job ad:
Research Fellow (FITNET-NHS Trial Manager)
University of Bristol - Faculty of Health Sciences

 

Only watched this today (from Aug 2020)
video about FITNET-NHS
Podcast - Julia Kan, 3rd Year medical student speaking with Emma Anderson.

https://www.youtube.com/watch?v=nVsSOsUF_FY

eta:
Julia Kan
"
Wednesday 13th January 2021 webinar
The very best of student projects from Bristol Medical School
Four students picked from the 250 student projects.

Julia Kan - Exploring the acceptability, feasibility and clinical utility of a new assessment tool for younger children (5-11-years) with CFS/ME"

http://www.bristolmedchi.co.uk/the-programme

I find it very odd that a professional and a medical student who are both supposedly interested in/researching ME/CFS cannot have read the draft new guidelines where it said that CBT/GET should not be used as 'treatment' or as a cure, and that CBT should only be offered as a supportive option.

 

Ah but paediatrics is different .....
Is there robust paediatric guidance in draft guidelines. Or is this " to follow" ?

 

Can't see how NICE could reasonably depart from the findings that these studies are "low and very low" quality - so they can't be used to promote treatment.

 

Yea this would strengthen the case to fund the study --- will provide treatment options for XK people --- hopefully, all blown out of the water by the NICE review.

 

Yea it's cheap s--t --- and it make it look as if the Government is doing something and by manipulating your audience you get them to give you a positive review in the questionnaire - you just don't look at school attendance, ability to function at school --- all of the things which tell an inconvenient truth.

 

Yea the Secretary of State for Health and Social Care funds NIHR - The response to this Parliamentary Questions shows the deflection strategy the Secretary of State/Minister uses
"All research commissioned by the NIHR and UKRI is subject to robust peer review processes to ensure that all the studies funded use appropriate outcome criteria to assess and measure their impact."
https://questions-statements.parliament.uk/written-questions/detail/2021-06-29/24368/

I think @Jonathan Edwards highlighted that NIHR was set up to fund research that MRC wouldn't fund
I guess it's politically convenient too i.e. the CBT/GET approach.

The public accounts committee is supposed to scrutinise Departments/Ministers - this is a waste of £1 million.

 

Precisely - any academic who can bring in money is welcome and no doubt held up as a role model for their colleagues --- who gives a s--t if it's crap.

 

Should be the end of the road for this line of flawed research but that may take some lobbying of Secretary of State for Health and Social Care (funds NIHR), public accounts committee, making it unacceptable to fund this crap - social media.

 

Hopefully the NICE review - but try to make funding this crap politically unacceptable.