Hutan
Senior Member
- Messages
- 1,099
- Location
- New Zealand
http://www.meaction.net/2015/08/19/australian-research-into-mecfs-in-adolescents/
AUSTRALIAN RESEARCH INTO ME/CFS IN ADOLESCENTS
I'm so pleased to see this. Dr Sarah Knight is the person running another research study titled 'Understanding CFS' in children and adolescents that had the strange survey questions such as 'do you chew or smoke tobacco an hour or less before bedtime?', 'do you repeat numbers or words in order to stop bad things happening' and, in the parents' survey 'do you give your child treats when they are sick?'. My son is a participant in this survey.
There were no questions in this survey about PEM or a number of other common ME symptoms. And, given the participation agreement did not give the researchers any access to medical records and in any case the single consultation my son had at the fatigue clinic was quite limited, they can't be sure that the participants meet any criteria for ME/CFS. The information participants were given for this survey made no mention of any specific criteria, so it's great to see the reference to the CCC for the neuroimaging study.
Our impression of the Royal Children's chronic fatigue clinic late last year was that it is not helpful. The treatment involves a residential rehabilitation programme with exercise and CBT (not offered to my son because he was planning to return to school at the time of the appointment). It does seem that there are two senior clinicians who have different views about ME/CFS which may explain the seemingly schizophrenic approach to research (neurological biomarkers as well as surveys on psychological and behavioural issues).
I've been pestering the team there and Sarah Knight specifically as well as the hospital ethics person about the inadequacies of the research survey throughout this year, with little response.
Anyway, will be interesting to see the outcome of this latest study in due course.
AUSTRALIAN RESEARCH INTO ME/CFS IN ADOLESCENTS
August 19, 2015
NEUROLOGICAL BIOMARKERS IN PAEDIATRIC ME/CFS
ME Research UK is contributing nearly $100,000 (£46,000) to a study looking for neurological biomarkers in adolescents with ME/CFS.
Murdoch Children’s Research Institute, at The Royal Children’s Hospital in the University of Melbourne, Australia is conducting the study.
It will study 25 adolescents diagnosed using the Canadian Clinical Criteria adapted for paediatricians and 25 matched healthy controls.
Both groups will have baseline functional neuroimaging, followed by 90 minutes of structured effortful thinking and learning activities (similar to school work), then have another brain scan.
Neuroimaging techniques have rarely been applied to understanding the impact of ME/CFS on the function of the developing brain. Now Dr Sarah Knight and colleagues in Melbourne will examine how the brain and its underlying functioning responds to mental exertion in adolescents with ME/CFS, using a variety of neuroimaging techniques.
NEUROLOGICAL BIOMARKERS IN PAEDIATRIC ME/CFS
ME Research UK is contributing nearly $100,000 (£46,000) to a study looking for neurological biomarkers in adolescents with ME/CFS.
Murdoch Children’s Research Institute, at The Royal Children’s Hospital in the University of Melbourne, Australia is conducting the study.
It will study 25 adolescents diagnosed using the Canadian Clinical Criteria adapted for paediatricians and 25 matched healthy controls.
Both groups will have baseline functional neuroimaging, followed by 90 minutes of structured effortful thinking and learning activities (similar to school work), then have another brain scan.
Neuroimaging techniques have rarely been applied to understanding the impact of ME/CFS on the function of the developing brain. Now Dr Sarah Knight and colleagues in Melbourne will examine how the brain and its underlying functioning responds to mental exertion in adolescents with ME/CFS, using a variety of neuroimaging techniques.
I'm so pleased to see this. Dr Sarah Knight is the person running another research study titled 'Understanding CFS' in children and adolescents that had the strange survey questions such as 'do you chew or smoke tobacco an hour or less before bedtime?', 'do you repeat numbers or words in order to stop bad things happening' and, in the parents' survey 'do you give your child treats when they are sick?'. My son is a participant in this survey.
There were no questions in this survey about PEM or a number of other common ME symptoms. And, given the participation agreement did not give the researchers any access to medical records and in any case the single consultation my son had at the fatigue clinic was quite limited, they can't be sure that the participants meet any criteria for ME/CFS. The information participants were given for this survey made no mention of any specific criteria, so it's great to see the reference to the CCC for the neuroimaging study.
Our impression of the Royal Children's chronic fatigue clinic late last year was that it is not helpful. The treatment involves a residential rehabilitation programme with exercise and CBT (not offered to my son because he was planning to return to school at the time of the appointment). It does seem that there are two senior clinicians who have different views about ME/CFS which may explain the seemingly schizophrenic approach to research (neurological biomarkers as well as surveys on psychological and behavioural issues).
I've been pestering the team there and Sarah Knight specifically as well as the hospital ethics person about the inadequacies of the research survey throughout this year, with little response.
Anyway, will be interesting to see the outcome of this latest study in due course.
Even if they didn't respond, maybe your actions might have them thinking about correcting THEIR OWN bad habits of the mind. One can hope, right? 