slysaint
Senior Member
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FITnet is being funded by NIHR (NHS); this is what I found under the project listing:
http://www.nets.nihr.ac.uk/projects/hta/14192109
COST: £ 994,430.00
NOTE: Also found that Dr Crawley is on the NIHR fellowship review panel.
In 2008: NIHR Clinician Scientist Award
Dr E Crawley
Evidence based prevention, identification & treatment of paediatric
chronic fatique syndrome.
2014/2015 :
CCAH Bristol:
Chronic Fatigue syndrome (CFS/ME)
Lead: Esther Crawley
with Simon Collin, Lucy Beasant, Amberly Brigden, Roxanne Potgeiter and Tom
Norris
.
Epidemiology
The CFS/ME team welcomed Tom Norris to the MRC funded work investigating the epidemiology of
CFS/ME in children. This project has completed the first phase of the study and described the
prevalence of CFS/ME at 16 and 18, the chance of recovery from CFS/ME in the population and the
characteristics of children who get CFS/ME in later adolescence compared to those who don’t.
During 2015/16, the team will use causal methods to investigate the causes of CFS/ME in teenagers.
The Recovery Study has now recruited over 200 participants and will investigate when children
recover and what factors predict persistent illness.
We have nearly completed the analyses of primary care data from the Clinical Practice Research
Database, and will report soon on 10-year trends in diagnoses of CFS/ME and related conditions.
Treatment
We started recruitment into our new trial “MAGENTA” in September 2015. This NIHR funded trial
will compare Graded Exercise Therapy with Activity Management in children attending the Bath
specialist service. We have recently heard that the HTA intend to fund the FITNET-NHS trial. This will be the largest trial ever conducted in CFS/ME and will investigate using internet delivered Cognitive Behaviour Therapy throughout the UK. Recruitment will start in 2016.
Our research investigating treatments and outcomes for adult CFS/ME patients has recruited 800
patients over the past year from 10 NHS teams and 1 private provider.
A 12-month follow-up is already underway, with final analysis scheduled for the end of 2016. We have begun to collect long-term follow-up data from 1,200 former patients who attended specialist services up to 5 years ago.
We continue our work investigating how children express preference for treatment in trials.
Qualitative Studies
We have completed studies investigating the views of children and their parents on which illness domains are important for a Patient Reported Outcome Measure (PROM) for paediatric CFS/ME. We have also completed work on how we should define recovery in children with CFS/ME and what magnitude of change is important to them as well as a study on why children with CFS/ME get depressed. A study of adult patients’ experiences of NHS specialist CFS/ME services is in the final stages of analysis.
Systematic reviews
During 2014/15 we conducted the following systematic reviews which we anticipate will be published 2015/16:
1. Recovery in children with CFS/ME.
2. Effectiveness of nutritional manipulation in children with CFS/ME
3. Children’s experiences of CFS/ME: a meta-ethnography of qualitative studies.
4. How do children express treatment preference in trials?
5. Treatment of children with CFS/ME and co-morbid depression
"
So there should be a review published from the 2014/2015 and the first analysis of MAGENTA should be any time soon.
I hope that someone will request the data with an FOI.
If anyone has already posted any of this apologies. Will post more if I find anything else.
http://www.nets.nihr.ac.uk/projects/hta/14192109
COST: £ 994,430.00
NOTE: Also found that Dr Crawley is on the NIHR fellowship review panel.
In 2008: NIHR Clinician Scientist Award
Dr E Crawley
Evidence based prevention, identification & treatment of paediatric
chronic fatique syndrome.
2014/2015 :
CCAH Bristol:
Chronic Fatigue syndrome (CFS/ME)
Lead: Esther Crawley
with Simon Collin, Lucy Beasant, Amberly Brigden, Roxanne Potgeiter and Tom
Norris
.
Epidemiology
The CFS/ME team welcomed Tom Norris to the MRC funded work investigating the epidemiology of
CFS/ME in children. This project has completed the first phase of the study and described the
prevalence of CFS/ME at 16 and 18, the chance of recovery from CFS/ME in the population and the
characteristics of children who get CFS/ME in later adolescence compared to those who don’t.
During 2015/16, the team will use causal methods to investigate the causes of CFS/ME in teenagers.
The Recovery Study has now recruited over 200 participants and will investigate when children
recover and what factors predict persistent illness.
We have nearly completed the analyses of primary care data from the Clinical Practice Research
Database, and will report soon on 10-year trends in diagnoses of CFS/ME and related conditions.
Treatment
We started recruitment into our new trial “MAGENTA” in September 2015. This NIHR funded trial
will compare Graded Exercise Therapy with Activity Management in children attending the Bath
specialist service. We have recently heard that the HTA intend to fund the FITNET-NHS trial. This will be the largest trial ever conducted in CFS/ME and will investigate using internet delivered Cognitive Behaviour Therapy throughout the UK. Recruitment will start in 2016.
Our research investigating treatments and outcomes for adult CFS/ME patients has recruited 800
patients over the past year from 10 NHS teams and 1 private provider.
A 12-month follow-up is already underway, with final analysis scheduled for the end of 2016. We have begun to collect long-term follow-up data from 1,200 former patients who attended specialist services up to 5 years ago.
We continue our work investigating how children express preference for treatment in trials.
Qualitative Studies
We have completed studies investigating the views of children and their parents on which illness domains are important for a Patient Reported Outcome Measure (PROM) for paediatric CFS/ME. We have also completed work on how we should define recovery in children with CFS/ME and what magnitude of change is important to them as well as a study on why children with CFS/ME get depressed. A study of adult patients’ experiences of NHS specialist CFS/ME services is in the final stages of analysis.
Systematic reviews
During 2014/15 we conducted the following systematic reviews which we anticipate will be published 2015/16:
1. Recovery in children with CFS/ME.
2. Effectiveness of nutritional manipulation in children with CFS/ME
3. Children’s experiences of CFS/ME: a meta-ethnography of qualitative studies.
4. How do children express treatment preference in trials?
5. Treatment of children with CFS/ME and co-morbid depression
"
So there should be a review published from the 2014/2015 and the first analysis of MAGENTA should be any time soon.
I hope that someone will request the data with an FOI.
If anyone has already posted any of this apologies. Will post more if I find anything else.