Esther12
Senior Member (Voting Rights)
I don't remember seeing anything about this previously:
http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/
The above page also includes this:
I wonder if they'll try to justify a definition of recovery which just means 'filling in a few forms a bit more positively' or something?
'Do you feel empowered to live a meaningful life?'
OT: I'd previously said Crawley is now on an NIHR review board choosing which projects to fund. The process she was connected to approved this:
DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome
(CFS/ME)
Fund
Conditional
https://www.nihr.ac.uk/funding-and-support/documents/Fellowships/NIHR DRF 2016 Public Minutes.pdf
There are some details of that here:
MOrPH-CFS
We know very little about the causes of CFS/ME, although it is sometimes triggered by a viral infection such as glandular fever. The aim of this study is to explore the 'population' of viruses which inhabit the human body. This is called our 'virome'. We will be investigating whether the virome in children with CFS/ME is any different from the virome in their brother and sisters (who do not have CFS/ME). We will do this by looking for the genetic 'signatures' of viruses in DNA extracted from saliva. We are running our study with the help of the Bristol Biobank. This is a place where samples for lots of different research are stored all in the same place
http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/
The above page also includes this:
Interventions
We want to improve treatment for children with CFS/ME. To do this we have been working on how children and young people think we should define recovery, what difference in disability is important to children and finding out how to measure outcome in paediatric CFS/ME. We have interviewed children to find out about how to define recovery and the difference in disability that is important to them. We hope to publish these results in 2017. Children and young people have helped us create a Patient Reported Outcome which measures changes in various areas that children have told us are important. We hope to be able to test this in 2017/18.
I wonder if they'll try to justify a definition of recovery which just means 'filling in a few forms a bit more positively' or something?
'Do you feel empowered to live a meaningful life?'

OT: I'd previously said Crawley is now on an NIHR review board choosing which projects to fund. The process she was connected to approved this:
DRF-2016-09-021
Depression in paediatric chronic fatigue syndrome
(CFS/ME)
Fund
Conditional
https://www.nihr.ac.uk/funding-and-support/documents/Fellowships/NIHR DRF 2016 Public Minutes.pdf
There are some details of that here:
Depression and anxiety in adolescents with CFS/ME
We want to find out how many teenagers with CFS/ME actually have depression and anxiety and how best to identify them. The study will recruit teenagers with CFS/ME after their first
appointment with the team. Teenagers with CFS/ME will be interviewed to assess depression
and other mental health problems, and will be asked to fill in two short questionnaires about
symptoms of depression and anxiety. They can choose to be interviewed by Skype or face-to-face, at home or at the hospital. The study will help us to find out how good the questionnaires
are at picking up depression and other mental health problems in teenagers with CFS/ME so
that we know which questionnaire is best to use.
To find out more about this study, please feel free to contact:
Dr Maria Loades, Clinical
Psychologist.
Email: M.E.Loades@bath.ac.uk