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Esther Crawley blog (February 3): "Doing what is right in a controversial field"

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Barry53

Senior Member
Messages
2,391
Location
UK
BurnA said:
I'd say she might have....but i doubt she still is if she read @Jonathan Edwards post :)
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The picture seems, perhaps deliberately, to have that little-girl-lost look to it, and maybe EC has indeed lost her way. In my life some of the most useful and meaningful advice has also been some of the most hurtful, and it can be extremely difficult to look objectively at hurtful advice. But @Jonathan Edwards advice is I think very sincere, and if EC really does have what it takes, should ponder it seriously.
 
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user9876

Senior Member
Messages
4,556
Aurator said:
"Children need to know that their treatments are effective and the NHS needs to know that these treatments are also cost-effective."

This isn't the first time I've seen this unhappy juxtaposition of two not necessarily reconcilable imperatives. The irreconcilability is on the surface for all to see, and possibly a fair few parents of children with ME see the potential conflict there. Probably far fewer parents figure out the subtext underlying "children need to know" and see that what is really meant is "children need to be made to believe".
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I assume her claims are that her research will help people know but it won't. Her trial protocols will only lead to meaningless results because she measures interventions changing subjective views of symptoms and abilities by asking patients of subjective views.

So nothing can be said to children or the NHS. I would say that children are told they must believe and when it doesn't work they are blamed. The NHS commissioners can be told they are doing something so feel good.
 
Graham

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Can anyone remember the term that she used in one interview rather than CFS to sort of justify the widening net used to catch youngsters? It would be even more useful if you could remember where she used it! Thanks.
 
Countrygirl

Countrygirl

Senior Member
Messages
5,464
Location
UK
Graham said:
Can anyone remember the term that she used in one interview rather than CFS to sort of justify the widening net used to catch youngsters? It would be even more useful if you could remember where she used it! Thanks.
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Here is one example @Graham

http://adc.bmj.com/content/early/2017/01/19/archdischild-2016-311198

Participants We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.
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This is from a 2012 paper entitled Chronic Disabling Fatigue at Age 13 and Association with Family Adversity:

WHAT’S KNOWN ON THIS SUBJECT: Chronic fatigue syndrome (CFS) is a disabling illness. Some children with chronic disabling fatigue are housebound. Some primary care physicians find making the diagnosis of CFS difficult. WHAT THIS STUDY ADDS: Chronic disabling fatigue is more common in 13-year-olds than previously realized with a population prevalence of ∼2.0%. Chronic disabling fatigue in teenagers is more common in those with higher levels of early family adversity
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Graham

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
Isn't it strange that, when you have such power over a child, they say such nice things? Amazing what fair and unbiased surveys can discover. My surveys at school always showed that 9 out of 10 people thought maths was the best subject.

Thanks all. That is exactly what I was looking for. I have enough brain cells left to know some of the things that I have forgotten, but not enough to find them.
 
Molly98

Molly98

Senior Member
Messages
576
Grigor said:
Children "love" the treatment they are getting at our clinic said no freaking child ever......
She keeps saying that. But really kids love getting CBT? Really??
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Ha ha, yes they all love St Esther's marvelous medicine... Not
But even if they did, that has no baring on whether her treatments work or are good for them... Or may be harmful to them.

Kids love lots of things that may be harmful or dangerous to them, that is why adults are given responsibility to make decisions for them and to protect them.
 
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Valentijn

Senior Member
Messages
15,786
Grigor said:
She keeps saying that. But really kids love getting CBT? Really??
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I dunno, it's probably a lot like playing make-believe at first. "Pretend you aren't sick anymore, and can go to school with your friends again, and be normal, and do fun stuff." :love:

Of course, then it becomes clear that Queen Esther is actually an evil despot who wants to eat the children. But by then they're not loitering in the dungeon waiting to get interrogated with questionnaires or by the evil queen's underlings, and have fled the realm :D
 
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Molly98

Molly98

Senior Member
Messages
576
chipmunk1 said:
I think they believe adults are beyond hope and untreatable and the only thing they can do is to brainwash future patients as early as possible so that they don't develop ME(Somatization)
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Well Chalder is quoted as saying something about targeting kids while they are young- much more easily influenced than adults, she then went on to play the child catcher in the West End musical of Chitty Chitty Bang Bang and got raving reviews.
 
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user9876

Senior Member
Messages
4,556
Grigor said:
Children "love" the treatment they are getting at our clinic said no freaking child ever......
She keeps saying that. But really kids love getting CBT? Really??
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From my experience they don't really do CBT or GET but have some weird sort of colouring chart to help with activity management. I think they aim to increase activity hence I guess they would claim it is graded activity therapy but in my experience they don't really give much of a push because they only occasionally see patients.

I suspect that children do appreciate the clinic. Firstly it may be the first time that someone has seemed to take their illness seriously (or someone different from their parents). The other thing is that a cure is offered. Crawley was telling children that most of the kids going to her clinic get better with her treatments. Of course Crawley or a doctor would rarely see a patient twice.
 
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UKmum

Messages
87
My experience is the children do not love the clinic. They do like the fact that their illness is believed and usually the specialist involvement takes some of the pressure off from schools. It also helps with getting support like home tuition so all in all it does improve life for the children and families. Its the contrast with the GP service that makes the clinics appreciated. It is very scary for kids to be told by doctors and pediatricians that they don't understand and can't help with their illness.
I met with Dr Crawley and she did not offer a cure in fact was extremely clear that there was currently no cure she could offer. No guarantees of recovery but said that children getting help via the clinics had more chance of recovering in a quicker timescale. The ongoing contact by skype is usually with an OT and very formulaic.
I think she truly believes in what she is saying but for all the research there doesn't seem to be any straightforward results published to base that belief on. Its anecdotal- lots of letters from children thanking her for helping them get better.
 
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