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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
This study is investigating CFS/ME in younger children (5-11-year olds) and explore ways in which treatment should be adapted for this younger age-group.

CACH Staff: Amberly Brigden (PhD)

This research aims to understand more about younger children with CFS/ME (5-11-year-olds), we want to understand:

  • The clinical characteristics of CFS/ME in younger children
  • Rates of recovery at 6 and 12 months
  • Which factors change recovery rates
  • The views of children with condition and the views of their parents/carer, clinicians and teachers
Project1: This project will use information to describe the characteristics of younger children: their age and gender; the types of symptoms they have; how severe their symptoms are; and how much school they miss. It will also investigate how many children get better at 6 and 12 months and whether there are factors that predict recovery.

Project2: A systematic review to consider what is already known about how health interventions are delivered to children aged 5-11-years.

Project3: This project will explore the views of children with CFS/ME, their parents/carers, their clinicians and their teachers.
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https://www.bristol.ac.uk/academic-child-health/research/research/cfsme/explorer/


project 3 thread:
https://www.s4me.info/threads/the-care-of-younger-children-5–11-years-with-cfs-me-a-qualitative-study-comparing-families’-teachers’-and-clinicians’-perspectives’-2020-crawley.15475/

eta:
EXPLORER: EXPLORing CFS/ME in youngER children (ages 5-7)
  • Full title
    Exploring chronic fatigue syndrome/myalgic encphalomyelitis in children aged 5-7 years.


    • Research summary
      Aims and objectives
      The overall aim is to develop an understanding of CFS/ME in children age 5-7 years. This will be done by exploring the epidemiology (demographic and clinical characteristics) and capturing the views and experiences of parents/carers and children. To carry out this work effectively it will be important to explore measures and data collection methods appropriate for this age group.

      Specific objectives are:
      • To carry out a prospective cohort study of children with CFS/ME aged 5-7 capturing baseline, 6 and 12 month follow-up data.
      • To carry out integrated qualitative methods to explore the child and parents/ carers experience of the illness as well as explore feasible and acceptable outcome measures and methods of data collection.

      Design
      Cohort study with integrated qualitative methods.
      Part 1: Cohort Study
      We will recruit children attending a specialist CFS/ME service in the Bath/Bristol area.
      Children will be eligible if they have a diagnosis of CFS/ME and are between 5- 7 years old. We will collect baseline data and 6 month and 12 month follow up data from patients, parents/ carers, schools and clinicians. Follow-up questionnaires will be completed on-line.

      Part 2: Integrated qualitative methods
      For the qualitative interviews we will exclude children who are severely affected. Interviews will take place in clinic, the patient's home or via Skype depending on patient preference. We will invite parents to participate in two interviews and children to participate in one. We anticipate each parental interview to take no longer than one hour and child interviews to take no longer than 30 minutes. We will offer families the opportunity to do a number of shorter interviews if this is preferred.
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    https://www.hra.nhs.uk/planning-and...exploring-cfsme-in-younger-children-ages-5-7/
 
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Just doing the same 3 things in a loop, never progressing an inch, and still always getting funded for doing the same 3 things in a loop, going strong over a century at this point, of the same 3 things in a loop that always find nothing but somehow always support the need to continue to do the same 3 things in a loop.

Beyond absurd. Still doing exploratory research after selling the fiction of having solved the problem for decades. The academic incentive system is clearly broken in clinical psychology, no other field of study can so aimlessly run around in circles producing nothing and not only get paid for it but awarded and celebrated for producing nothing in a closed loop that sends shrapnel all over the place, aimed at no one in particular but hitting only innocent vulnerable people begging for help.

If this went on for a century, the same questions, methods and conclusions would be in place, unchanged. A jobs program for a few built on the torture of millions.
 
For studies of kids in the UK with a "CFS/ME" diagnosis why do I never read in studies that genetic diseases, autoimmune diseases, PANS, and PANDAS have been ruled out.

I just checked, and it seems PANS and PANDAS aren't even recognized diseases by the NHS. I just saw this petition to get it recognized
https://www.change.org/p/nhs-englan...as-recognised-childhood-conditions-in-the-nhs

And it seems they have just started a "All Party Parliamentary Group" meeting on 3rd March 2020.
https://www.panspandasuk.org/appg

And this news article shows that kids with PANS/PANDAS suffer the same issues as we see in kids with "CFS/ME" in the UK
“These children are really suffering and risk ending up being pumped with psychotic drugs in psychiatric wards or needing special education totally unnecessarily. The cost of the treatment will be outweighed by the further burden on the NHS and on social care.”
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Source : Parents say their children are suffering from a little-known condition called PANDAS – but they can’t get treatment from the NHS


When will this change! When will Crawley and her cronies make way for the biomedical scientists........
 
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James Morris-Lent said:
So are they planning on coming right out and saying that 5-year-olds are conjuring CFS with 'unhelpful illness beliefs'? I feel like that is a tough sell.

My money is on the psychological Munchausen-by-proxy angle. Be careful parents! "Anything you say can and will be used against you..."
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Yes, they're going to claim that parents beliefs are unrealistic and somehow perpetuating the syndrome.
 
Amw66 said:
This is already in place. Crawley' s team drew up the FII guidance which actively targets CFS and delivered seminars to police, social work....
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This could turn out to be something that EC et al may actually regret.

This kind of social guidance may be used in a way that targets economically distressed and marginalised groups in an overaggressive way.*

I say this from the POV of how it might be implemented not that it should be implemented at all.

I'd be obliged if anyone could provide links to any of the material regarding delivery of FII guidance.
 
Snowdrop said:
This could turn out to be something that EC et al may actually regret.

This kind of social guidance may be used in a way that targets economically distressed and marginalised groups in an overaggressive way.*

I say this from the POV of how it might be implemented not that it should be implemented at all.

I'd be obliged if anyone could provide links to any of the material regarding delivery of FII guidance.
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@Tilly
Poster from FII seminars - I think you may gave an image of it?
 
Snow Leopard said:
Yes, they're going to claim that parents beliefs are unrealistic and somehow perpetuating the syndrome.
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Don't forget the teachers, a new and bold twist in me/cfs research from Bristol Univeristy.

The best part about this garbage is you can write the psych theory whatever results you get.

Oh, I missed the second part

Part 2: Integrated qualitative methods
For the qualitative interviews we will exclude children who are severely affected. Interviews will take place in clinic, the patient's home or via Skype depending on patient preference. We will invite parents to participate in two interviews and children to participate in one. We anticipate each parental interview to take no longer than one hour and child interviews to take no longer than 30 minutes. We will offer families the opportunity to do a number of shorter interviews if this is preferred.
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Straight from the LP playbook. This setting allows massive, uncontrolled influence from the investigator. An hour to get whatever response they want and they don't even have to include the patient.
 
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Amw66 said:
@Tilly
Poster from FII seminars - I think you may gave an image of it?
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Sorry been working my way through FII with some other mum's and there is a lot going on.

Not sure Crawley had a Fabricating or Inducing Illness one she had MUPPETS that fed into it.

The FII pathway was set up by Dr D Glaiser and Sir Stephens with RCPCH they are truly appalling and have now been brought into the light. https://www.rcpch.ac.uk/sites/defau...A_Practical_Guide_for_Paediatricians_2009.pdf

I have some slides I am now going through from a seminar held last week that is addressing the issue and have some interesting figures. they promise to take down the guidelines as they have been going too long but should never have been written in the first place. Glaiser has been hot water of late and we keep boiling the kettle as she has done some outrageous things. Will be writing about this to a few all parliamentary Groups when I get a spare few mins.

From memory it was the FITnet trial that included mothers and questioned them and their behaviour and is the undercurrent to their get out clause, just keeping a few onside for protection.

Will have a look at the research and include this in my Twitter conversations and see what comes up as I think the RCPCH are being questioned a lot at the moment about how they allow this to happen.

These interviews for the research I would say go against GDPR in the fact they falsely record information without allowing the subject matter (in this case the young person to put it right) and will be coerced by the nature of the questioning?

The Article 7 GDPR (3) (4) states that the data rests with the data subject (the child) and they should be allowed to review and change what they do not agree with. As the data is going to be shared it needs to be under recital 32 43 which states that "consent is not given freely where it is coerced". when a child is asked leading questions that cannot be considered as being given freely and then there is the matter of feeling bullied and threatened when forced to comply with a situation they feel is different to their lived experience and this would go under gaslighting. Like I said I would have to go through the questions to see if they are the normal "take you down the desired path of their treatment" but if they are anything like the other trials I would say young people are gaslighted into a different understating of self.
 

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Tilly said:
Sorry been working my way through FII with some other mum's and there is a lot going on.

Not sure Crawley had a Fabricating or Inducing Illness one she had MUPPETS that fed into it.

The FII pathway was set up by Dr D Glaiser and Sir Stephens with RCPCH they are truly appalling and have now been brought into the light. https://www.rcpch.ac.uk/sites/defau...A_Practical_Guide_for_Paediatricians_2009.pdf

I have some slides I am now going through from a seminar held last week that is addressing the issue and have some interesting figures. they promise to take down the guidelines as they have been going too long but should never have been written in the first place. Glaiser has been hot water of late and we keep boiling the kettle as she has done some outrageous things. Will be writing about this to a few all parliamentary Groups when I get a spare few mins.

From memory it was the FITnet trial that included mothers and questioned them and their behaviour and is the undercurrent to their get out clause, just keeping a few onside for protection.

Will have a look at the research and include this in my Twitter conversations and see what comes up as I think the RCPCH are being questioned a lot at the moment about how they allow this to happen.

These interviews for the research I would say go against GDPR in the fact they falsely record information without allowing the subject matter (in this case the young person to put it right) and will be coerced by the nature of the questioning?

The Article 7 GDPR (3) (4) states that the data rests with the data subject (the child) and they should be allowed to review and change what they do not agree with. As the data is going to be shared it needs to be under recital 32 43 which states that "consent is not given freely where it is coerced". when a child is asked leading questions that cannot be considered as being given freely and then there is the matter of feeling bullied and threatened when forced to comply with a situation they feel is different to their lived experience and this would go under gaslighting. Like I said I would have to go through the questions to see if they are the normal "take you down the desired path of their treatment" but if they are anything like the other trials I would say young people are gaslighted into a different understating of self.
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Definitely remember a different seminar poster . I was sure it was FII, but perhaps was mistaken .
The name Melanie Parker rings a bell as part of ECs team who presented
It had police input too from memory .

Perhaps I have finally lost the plot ...
 
Amw66 said:
Found the FII poster - see below.
On @Tilly blog .
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Yes, I thought Melanie Parker had taken over ECs role in the clinic, but it seems EC is still very much there. She is threatening/planning review appointments with many in the clinic, to see why they are not getting better!

It would be very revealing to know more about what was said at that training day!
 
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