HRA registered CFS studiesthat could be of interest

[Esther12]

Smacks a bit of big brother don't you think? Or maybe You will comply.

If they're going to assess the safety of a treatment, having information on compliance would be a useful part of that. If a 'GET' programme doesn't lead to patients increasing their activity levels then this programme being found to be safe should not lead to patients being reassured that it is safe for them to steadily increase their exercise levels.

 

[Adrian]

Research summary The purpose of this study is to pilot assess the use of activity monitors within the pathway for treating young people with Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME). The patients are currently treated using graded exercise therapy GET) which has shown to be effective and will not be the focus of this pilot. This pilot will investigate the compliance to a GET; development of positive carer support for young people following GET; and development of self-management strategies by young people with CFS/ME.

Smacks a bit of big brother don't you think? Or maybe You will comply.

I find this one concerning. It would be reasonable to believe that the only reason GET isn't harmful in trials is because those who would be harmed are not compliant. But they may appear so as they keep therapists happy or substitute activity. What evidence there is, I believe, suggests no great increase in activity with GET (or is it CBT).

Its one of the criticisms that @Tom Kindlon makes around harm is that there is no data collection to demonstrate compliance.

Here we have a trial aimed at testing measuring compliance with young people prior to doing it on adults - which I think is ethically very dodgy. It also worries me that young people may be more compliant and hence harmed.

 

[Sly Saint]

http://www.hra.nhs.uk/news/research...in-paediatric-chronic-fatigue-syndrome-cfsme/

Depression in Paediatric Chronic Fatigue Syndrome (CFS/ME)

Full title Depression in Paediatric Chronic Fatigue Syndrome (CFS/ME)
Research type Research study
IRAS ID 203495
Contact Name Maria Loades
Contact Email m.e.loades@bath.ac.uk
Sponsor organisation University of Bristol
Eudract number
ISRCTN number
Clinicaltrials.gov identifier
Additional reference number fields
Research summary Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) affects approximately 1 - 2 teenagers in every 100. It interferes significantly with their day-to-day lives. For example, on average, children and young people with CFS/ME miss one year of school. We think that about 1 in 3 children and young people with CFS/ME also have depression. Those with depression seem to be more disabled, experience more pain, and don’t seem to recover as well from CFS/ME. My research aims to improve the recognition of teenagers who have both CFS/ME and depression. It will result in us knowing how to identify depression and who is most at risk of getting depression. To find out how many teenagers with CFS/ME actually have depression and how best to identify them, I will recruit teenagers with CFS/ME after their first appointment with the specialist paediatric CFS/ME service in Bath. Teenagers with CFS/ME will be interviewed to assess depression, and asked them to fill in two short questionnaires about symptoms of depression. They can choose to be interviewed by Skype or face-to-face, at home or at the hospital. I will analyse how good the questionnaires are at picking up depression in these patients so that we know which questionnaire is best to use. I will also ask the young people to complete the questionnaires again 6 months after their interview.
REC Name South West - Frenchay Research Ethics Committee
REC Reference 16/SW/0136
REC Opinion
Further Information Favourable Opinion

Date of REC Opinion 1 July 2016

More details on this (appears to be being done with FITNET participants)

Depression in paediatric chronic fatigue syndrome (CFS/ME)

Plain English Summary:
Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME) affects approximately 1 - 2 teenagers in every 100. It interferes significantly with their day-to-day lives. For example, on average, children and young people with CFS/ME miss one year of school. We think that about 1 in 3 children and young people with CFS/ME also have depression. Those with depression seem to be more disabled, experience more pain, and don't seem to recover as well from CFS/ME.

Aim
My research aims to improve the recognition and treatment of teenagers who have both CFS/ME and depression. It will result in us knowing how to identify depression, who is most at risk of getting depression, and a new treatment approach specifically tailored to help this group of patients to recover.

Plan
This research will:
1)Find out how many teenagers with CFS/ME actually have depression and how best to identify them. I will recruit teenagers with CFS/ME after their first appointment with the specialist paediatric CFS/ME service in Bath. Teenagers with CFS/ME will be interviewed to assess depression, and asked them to fill in two short questionnaires about symptoms of depression. They can choose to be interviewed by Skype or face-to-face, at home or at the hospital. I will analyse how good the questionnaires are at picking up depression in these patients so that we know which questionnaire is best to use.
2)Existing data will be analysed for patterns to see whether particular groups of teenagers with CFS/ME (e.g. boys or girls, older or younger teens) are more likely to have depression than others and to see what impact having depression has on recovery with different treatments (after 6 months).
3)Explore whether there are differences in how teenagers with CFS/ME with depression think, compared to those without depression.

Teenagers in the FITNET-NHS trial, which is testing internet-delivered treatments for CFS/ME, will be asked to fill in two short questionnaires online before they start treatment. One questionnaire looks at the way people think in response to common situations, and the other looks at how they think about their CFS/ME symptoms.
This research will help us to discover: how much of a problem depression is, how to spot depression who is most at risk of depression more about how depression affects recovery from CFS/ME, the particular thinking patterns we should help these teenagers with.

development of 'new treatment'

The information gained from this research will be used to develop a treatment approach specifically for teenagers with CFS/ME and depression.

The treatment approach will be developed by a group of people with relevant experience and will include a group of between 6 and 12 patients (teenagers with CFS/ME) and parents of teenagers with CFS/ME who I will meet with twice.

Sharing this information Throughout this project, I will work closely with the Association of Young People with ME (AYME) to share the findings with children, young people and families affected by CFS/ME by various means; e.g. social media, AYME website.

The research findings will be written up in an accessible format and shared widely with professionals and patients as the project progresses. In addition, articles will be published in journals that are read by other people working with children and young people who have CFS/ME and findings will also be shared at conferences.

At the end of the project, I will travel across England to visit all the specialist teams who work with children and young people with CFS/ME to train their psychologists in using the new treatment approach that has been developed for teenagers with CFS/ME and depression.

as AYME is no more who are they now working with on this?

Lead Investigator:
Dr Maria Loades
Award:
£317,866.00
Start Date:
October 2016
End Date:
February 2022
Programme:
NIHR Fellowships
Research Type:
Career Development

https://www.fundingawards.nihr.ac.uk/award/DRF-2016-09-021

 

[Trish]

So the 'new treatment approach' will be developed by therapists chatting with a group of teens and parents. And then, without testing to see whether it works, she will then travel the UK telling all the other people treating teens with ME/CFS and possible depression how to do her 'new' approach.

What could possibly go wrong?

The funding they go on getting for this sort of stuff is astonishing compared to the amounts not given to biomedical studies.

 

[Amw66]

Questionnaires, the ability to pigeonhole responses to your pet theory again.

We have already seen how unsuitable HADS etc are for ME. It's the inability for researchers to be able to contemplate the impact of the condition on young lives as they still have a very poor understanding of the condition.

There is so much that is dismissed or passed to the anxiety/ depression box without wider thought re context.

I am continually amazed that young people are not more affected given the wall to wall gas lighting that goes on. An impact study of that would be illuminating.

Given some paediatric symptoms seem.to be under recognised ( POTS until recently was completely denied by Bristol as existing in paediatric CFS until pulled up bt Peter Rowe at a CMRC conference and still struggles to be recognised ) , and brain fog is widely misunderstood in terms of severity, manifestation and impact , I can't say I expect a lot from this.

Wouldnt it be nice to be pleasantly surprised . ( hint of irony)

 

[Invisible Woman]

If you're serious about wanting to tackle potential depression in teenagers with ME then, unless we're talking youngster in immediate danger of self harm, tackle finding effective treatments & means of support for those teenagers & their families first.

It really isn't rocket science.

If your house feel down around your ears which do you need as a priority, to undergo treatment to feel better about it or have your house rebuilt and some help with temporary accommodation, insurance claims and a good builder.

Utterly sick of how those who profess to know and care about psychology of people put their own careers & need to be relevant before the needs of children & young people.