FITNET-NHS Esther Crawley - 5th protocol out now

Sly Saint said:
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/
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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/
 
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FITNET-NHS Study
Esther12 said:
Looks like that 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/20180630214245/https://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/fitnet-nhs/faq/
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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.:cry:

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.
 
Trish said:
It's no wonder the bosses at Bristol Uni won't listen to any criticism of Crawley. She brings in shedloads of funding with her crap studies.
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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/]:

September
National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programme: £149,000. Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice. Esther Crawley and Roxanne Parslow. February 2020-2022

NIHR. Applied Research Collaborations West. £8,999,999. PI John Macleod. Esther Crawley Theme lead for Child health. Oct 2019 – 2024
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http://www.bristol.ac.uk/academic-child-health/grants/
 
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MEMarge said:
"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.
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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.
 
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
Fixed term contract with funding until 30 April 2022



The role

The post holder will be the trial manager for FITNET-NHS a large digital intervention trial for young people with CFS/ME. They will be based in the Centre of Academic Child Health a vibrant research community with a wide range of multidisciplinary research in Children and Young people.

What will you be doing?

The post-holder will be responsible for completing the HTA report, supporting the publication of papers, developing, and delivering an exciting and innovative dissemination plan and applying for additional funding for follow up studies. The post holder will be supported in applying for external grant funding for additional studies

You should apply if

  • You love working in teams,
  • You enjoy working with children and young people,
  • You are interested in dissemination and novel methods for communication,
  • You enjoy writing papers and want to further your career and apply for additional funding including fellowships.
Additional information

For informal enquiries please contact: Esther Crawley, esther.crawley@bristol.ac.uk

This advert will close at 23:59 GMT on Sunday 20th June 2021.
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The post-holder will be responsible for completing the HTA report, supporting the publication of papers, developing, and delivering an exciting and innovative dissemination plan and applying for additional funding for follow up studies. The post holder will be supported in applying for external grant funding for additional studies
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Their confidence that the ship will sail on unhindered by any negative trial results or instruction from NICE not to do any more GET/CBT treatment seems limitless.

Where's that large iceberg when we need it?
 
Only watched this today (from Aug 2020)
video about FITNET-NHS
Podcast - Julia Kan, 3rd Year medical student speaking with Emma Anderson.




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




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.
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Ah but paediatrics is different .....
Is there robust paediatric guidance in draft guidelines. Or is this " to follow" ?
 
Sly Saint said:
Apart from saying that MJW had quit, they don't appear to have amended their info re AYME.
Don't they have to inform anyone that they no longer have the backing of a patient charity?
Or maybe they do?



And the APPG no longer exists(?) and the MPs who are part of the CMRC(?)
But the last line is the most concerning.
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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.
 
Adrian said:
I suspect so I know with other government funded research they like to have dissemination plans to communicate the main ideas with a variety of different stakeholders through many sources.
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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.
 
rvallee said:
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.
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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.
 
Snowdrop said:
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.
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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.
 
Trish said:
It's no wonder the bosses at Bristol Uni won't listen to any criticism of Crawley. She brings in shedloads of funding with her crap studies.
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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.
 
Sly Saint said:
what are the implications for this and any other GET trial now with new guidelines?
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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.
 
Trish said:
Their confidence that the ship will sail on unhindered by any negative trial results or instruction from NICE not to do any more GET/CBT treatment seems limitless.

Where's that large iceberg when we need it?
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Hopefully the NICE review - but try to make funding this crap politically unacceptable.
 
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