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

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.
  
  
  
  https://www.hra.nhs.uk/planning-and...exploring-cfsme-in-younger-children-ages-5-7/

 

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.

 

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..."

 

>The views of children with condition and the views of their parents/carer, clinicians and teachers

 

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

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........

 

Yes, they're going to claim that parents beliefs are unrealistic and somehow perpetuating the syndrome.

 

This is already in place. Crawley' s team drew up the FII guidance which actively targets CFS and delivered seminars to police, social work....

 

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.

 

@Tilly
Poster from FII seminars - I think you may gave an image of it?

 

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

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.

 

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.

 

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?

 

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 ...

 

Found the FII poster - see below.
On @Tilly blog .

 

That is from Dr Glasier and we are looking at getting this taken down her teaching is appalling listen to the radio https://www.bbc.co.uk/programmes/m0...byX_fGk6D1sYNVA_dGU9IV_QEGY-RUZIY1w0GYLjeMh1Ias

Gigi mum was accused of being a refrigerator mother as @Sean points out and they use so very many more

 

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!

 

Is that a clinical review of the patients, or a managerial review of the staff?

 

If only it was the latter!
I have heard that some "therapists" seem content with how the child is doing, until a review with EC comes up!