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Investigating using FITNET to treat paediatric CFS/ME in UK (FITNET-NHS)

Messages
2,125
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.:nerd:
 
Messages
63
Location
Oxfordshire, England
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


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.

I have been watching for this for ages, having been promised two years ago by AYME that there was research in the pipeline supporting stunning recovery rates. The clinic Dr Crawley heads has been going long enough they should have data to support their treatment approach (heavily managed). That they haven't published yet is telling. Also I 'met' a number of parents on a forum whose children were being seen at Bath and not having stunning recoveries.

Yes, when it is published, someone needs to take a very careful look at the data supporting whatever outcomes they list.
 
Messages
52
Esther Crawley is on her friend Phil Hammonds show...conflict of interest? Advertising your colleagues research? Well your own really I suppose as the Guinea pigs will be from his clinic....

Esther Crawley appearing on BBC Radio Bristol
Saturday morning 9-10am

http://www.bbc.co.uk/radiobristol
Contact show in air: Studio: 0345 900 5 949
Text: 81333 and start the message with "Bristol”
Dr Phil Hammond @drphilhammond
On my @bbcrb show 9-10 Sat
Prof Esther Crawley
#CFS/ME
#FITNET
Dr Nicola Minaur
@NorthBristolNHS
#Ask3Questions
Shirley Kelly
@AriaLingerie
 

Dolphin

Senior Member
Messages
17,567
4.11.4 Secondary outcomes

[..]

3. School attendance (self-report school or home tuition)
School attendance is more objective than most of the measures they are using. However I would feel more confident if school records were used rather than self-report. Alternatively it would be good if they did a sub-study comparing school records with what is self-reported.
It appears from some previous studies that CBT has the potential to bias responses to questionnaires.
 
Messages
63
Location
Oxfordshire, England
School attendance is more objective than most of the measures they are using. However I would feel more confident if school records were used rather than self-report. Alternatively it would be good if they did a sub-study comparing school records with what is self-reported.
It appears from some previous studies that CBT has the potential to bias responses to questionnaires.

I read somewhere (I think an AYME publication back when Dr Speight was still their advisor) that School attendance alone shouldn't be taken as evidence of improvement. Kids may be in school in a limited way, but doing nothing outside school, or they may be sitting there but unable to learn as their brain fog is too great. (My daughter would manage one lesson, but not be able to string a sentence together afterwards, and could scarcely walk back to the car.) What my kids wanted more than anything was to be in school and able to interact and learn in the usual way. Our school (up through GCSEs) was focused on attendance figures, and suggested at one point that daughter just sit in the library as that would count as attending more -- as if!! Needless to say we declined. Also needless to say we weren't very popular with them!

When they got to 6th form and we had a different person to relate to, it was like a different school, and they were totally supportive, even taking daughter on a part-time basis year 12, despite not being funded for part-time students. This gave her time to stabilize, and she's gone on to recover, as far as we can tell. And of course the school was delighted when she got her place at Durham!

Yes, really disappointed there are no objective measurements. Also no control group by any definition, so they won't know if a certain percentage would have improved anyway, as happened with mine, despite no 'treatment'. I don't have any background in science, but it's sheer common sense to work that one out.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
School attendance is more objective than most of the measures they are using. However I would feel more confident if school records were used rather than self-report.

School attendance is not satisfactory on its own as children are not the decision makers and can easily be forced into going. The problem is that well, you can turn up at school and still be useless and eventually drop out. Turning up at school doesn't mean you're capable of doing much work. Why do I say this? because that was my experience many years ago!
Plus there is likely parental pressure for the child to go to school (even if the child cannot do much), because both parents these days need to work and can't afford to pay a carer!

If they used a composite measure of questionnaries like Lenny Jason's fatigue questionnaire, SF-36PF, a simple question about whether you have recovered or not, actigraphy and school attendance, then the results of such a trial would be far more trustworthy.

The protocol says the primary outcome is at 6 months (and max followup of 12 months post randomisation). This is simply not good enough. I'll also say right now, they are never going to choose publish a long term followup study like the Dutch Trial, like the PACE trial because they showed null results and this trial will too. The only way it will happen is pressure from outside the group.
 
Messages
1,446
.
Crawley promoting FITNET here, says critics did not read the Dutch study properly.

Crawley says a lot here, very fast. See how she spins.

Radio Bristol 5th November (today) interview starts at about 10 minutes in. Dr Phil Hammond who interviews Esther Crawley actually works for her at the Bath Hospital CFS Service, as well as being a radio DJ.

http://www.bbc.co.uk/programmes/p04cd54b#play
.
 

user9876

Senior Member
Messages
4,556
I have been watching for this for ages, having been promised two years ago by AYME that there was research in the pipeline supporting stunning recovery rates. The clinic Dr Crawley heads has been going long enough they should have data to support their treatment approach (heavily managed). That they haven't published yet is telling. Also I 'met' a number of parents on a forum whose children were being seen at Bath and not having stunning recoveries.

Yes, when it is published, someone needs to take a very careful look at the data supporting whatever outcomes they list.

She tried to have my child rediagnosed and put on a psych ward saying that she had been ill for too long for it to be CFS.

The problems with the protocol are so big that the outcomes of the research will be meaningless. There are no objective measures. And she is taking 6 months as a primary end point which is where the dutch team saw the biggest improvement. But there will be no measurements taken of real improvement.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
We need to design an information sheet that is put on the internet to inform parents of the truth about FITNET and EC's definition of ME. Then add helpful information, and direct them to examples of real research. Maybe a blog could be created, maybe a spin off from PR?
 

anniekim

Senior Member
Messages
779
Location
U.K
I have been reading the FitNet protocol http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf but I can't find what ranges they will use to assess the primary outcome using the SF 36 questionnaire? I have seen on page 15 talking about comparing those with co morbid mood disorders with none but I can't establish how they will measure effectiveness using the SF 36 questionnaire?
 
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user9876

Senior Member
Messages
4,556
I have been reading the FitNet protocol http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0007/170962/PRO-14-192-109.pdf but I can't find what ranges they will use to assess the primary outcome using the SF 36 questionnaire? I have seen on page 15 talking about comparing those with co morbid mood disorders with none but I can't establish how they will measure effectiveness using the SF 36 questionnaire?

I would assume they will use a mean difference method. It is not a valid method to use for such a questionnaire but the medical profession seems quite happy to make unjustified assumptions that questionnaires lead to linear scales.
 

anniekim

Senior Member
Messages
779
Location
U.K
Thanks @user9876 , having barely scraped a C at my Maths O level, the statistical methods go way above my head. I can understand ranges, but I confess I don't understand your terms. Would it be possible to explain mean difference method and linear scales? Apologies for my ignorance.
 
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Messages
2,125
We need to design an information sheet that is put on the internet to inform parents of the truth about FITNET and EC's definition of ME
Better to try and somehow get them to stop looking to AYME for guidance and instead go to Tymes Trust
http://www.tymestrust.org/
tymesheading.gif

https://www.theguardian.com/society/2011/feb/24/truth-about-exercise-and-therapy

@MEMum @2kidswithME any ideas how?
 
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