EXPLORER study: Exploring treatments for younger children with CFS/ME - Amberly Brigden, Esther Crawley

dave30th said:
is there a big wave of kids 5-7 who are having this? I haven't heard about this in that age cohort but maybe I've been missing something?
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Not that I am aware of at the moment but I have started to look and ask.

There is always a plan of action with EC research so I would say some funding with regards to mental health or digital has become available? Again I will keep my ears and eyes open.

I would suspect this is an ongoing plan of action to feed into the Social Services entering schools that is being promoted. I have 101 things to say about that but now is not the time or place. They need to get numbers to show parents are not doing a good job of making children go to school. You can see that clearly with the Covid situation and perhaps numbers will help their plan?

What is not recognised is there is a surge at the age of 8 for ME cases slow decline. POTS hEDS and hormonal problems seem to trigger this when they have a viral of some sort about the same time this then impacts on their systems and if they are kept active and have problems eating they then go into full blown ME. so this age range will pick up what is happening... well it would if anyone else was going the research and testing was implemented.
 
Full title: Developing an effective intervention for younger children (5-11 years) with Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME)

Abstract:

Background Paediatric Chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME) is relatively common (0.4-2.4%) and can lead to prolonged illness and disability with negative impacts on children, their families and high healthcare costs. CFS/ME is characterised by persistent, disabling fatigue and is associated with a range of symptoms.Paediatric and specialist CFS/ME services see patients below the age of 12, however little is known about how to treat this age group. Disability in the under-12 age group is high, with low levels of school attendance, high levels of fatigue, anxiety, functional disability and pain. Research exploring epidemiology and treatments have focused on children aged 12 and over. Preparatory work for this application suggests younger age predicts worse physical function 12 months after assessment (change in SF-36 physical function subscale is 1.44 points (95% CI 0.03 to 2.86) per chronological year (p=5 to age

Aim To develop an intervention for CFS/ME in 5-11 year olds, in line with MRC guidance.

Research Questions What are the characteristics of 5-11 year olds with CFS/ME? How are cognitive and/or behavioural interventions delivered to 5-11 year olds? Is there evidence to suggest that these are acceptable to children, parents/carers and clinicians? What are the views of families affected by CFS/ME in 5-11 year olds? What are the views of professionals on how to deliver intervention for CFS/ME in 5-11 year olds?

Plan of Investigation

Project 1 (Research Question (RQ1): I will use secondary data on children aged 8-11 from one trial and one cohort study. I will deliver a cohort study as part of this PhD to collect data on 5-7 year olds. I will combine these datasets to describe the clinical and demographic characteristics of 5-11years olds, as well as reporting recovery rates at 6 and 12 months and risk factors to poorer recovery.

Project 2 (RQ 2): I will carry out a mixed-methods systematic review exploring cognitive and/or behavioural Interventions for 5-11year olds. The mode of delivery for each intervention will be described detailing aspects such as: what was done and what was needed, and by coding interventions using the Behaviour Change Techniques Taxonomy. In addition, I will present mixed-methods data on whether children, parents/carers and clinicians find these interventions acceptable.

Project 3(RQ 3): I will carry out qualitative interviews with children and parents/carers. Semi-structured topic guides will explore: the experience of families; perspectives on effective intervention; views on acceptable outcome measures. I will audio record interviews, keep visual images, take observations notes and analyse all of these using thematic analysis.

Project 4 (RQ 4): I will synthesise projects 1-3 to develop an intervention for 5-11year with CFS/ME. In the fourth year, I will convene an expert focus group to: review evidence (from studies 1-3), gather the group's perspectives and finalise a logic model of the intervention.

Benefits Within 5 years of project completion I will have developed and evaluated an intervention that can be delivered within NHS services. Paediatric CFS/ME Patients and families affected by CFS/ME, clinicians and NHS commissioners will benefit from knowing the epidemiology of CFS/ME in 5-11year olds and effective treatment. Wider Paediatric Services Other clinical conditions may benefit from understanding effective ways to adapt behavioural interventions for 5-11 year olds, including chronic pain services.

Lead Investigator(s):
Miss Amberly Brigden

Award:
£222,971.00

Start Date:
October 2017

End Date:
October 2020

https://fundingawards.nihr.ac.uk/award/DRF-2017-10-169
 
Benefits Within 5 years of project completion I will have developed and evaluated an intervention that can be delivered within NHS services. Paediatric CFS/ME Patients and families affected by CFS/ME, clinicians and NHS commissioners will benefit from knowing the epidemiology of CFS/ME in 5-11year olds and effective treatment. Wider Paediatric Services Other clinical conditions may benefit from understanding effective ways to adapt behavioural interventions for 5-11 year olds, including chronic pain services.
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Their overhyped self confidence knows no bounds. I'm guessing in the following five years she will cure malaria and solve the climate crisis.

Why can't they stop messing with kids heads and give the families and kids the care and support they need?
 
Andy said:
My guess would be it's self explanatory, that they will follow the guidance issued by the MRC on developing such interventions.
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Thanks @Andy, you put it so clearly...

Presumably an earlier version of this: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7271909/
Medical Research Council framework for development and evaluation of complex interventions: A comprehensive guidance



Complex interventions introduce the use of two or more information sources or two or more research methods to answer a research question.

 
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