Discussion in 'PsychoSocial ME/CFS Research' started by Andy, Oct 24, 2020.
Open access, https://journals.sagepub.com/doi/10.1177/1359104520964528
Treatment? What treatment?
This is a 2020 paper. It might be useful when commenting on the NICE Guideline draft if the draft says that CBT is useful in helping patients adapt to their illness. Clearly, the idea of CBT for ME/CFS as understood by at least some clinicians has nothing to do with support for adaptation.
What evidence is there for children with ME/CFS producing less melatonin? There are questions about the safety of melatonin supplementation in children.
Oh, good grief. These families have got enough to be dealing with, without cards that upgrade each week and colour-coded time.
Yay for the families. I guess the children had the same reaction to their activities diaries as we did to Getset Julie.
Wearable technology could indeed be useful in helping children/young people with ME/CFS manage their activity levels. But you just know that, in the hands of these clinicians, it could end badly.
I can imagine them trying to get a child to sleep less or get to school, with a promised reward.
This was good though:
The objective seems to be to "cure" CFS at the risk of leaving them with OCD.
I echo this.
Despite what the out going NICE guidelines say, there are no evidenced treatments for people with ME or ME/CFS of any age. Anyone attempting anything other [than] symptom management is undertaking experimental intervention and should only do this with appropriate ethical approval and fully informed consent.
The research into CBT aimed at treating the underlying condition, ie PACE, clearly indicates this is ineffective. Further I am not aware of any research into CBT aimed at helping people with ME adjust/adapt. So given the survey evidence raises concerns about CBT in general in relation to ME, anyone considering supportive CBT because it seems to help adjustment/coping in other conditions should proceed with utmost caution.
This paper seems rather to be putting the cart before the horse.
As an adult with ME I also tried this strictly timed management business & diary approach.
I suggest that anyone suggesting this approach to others, be they children or adults, try it and follow it strictly.
The reality means that you end up watching the clock constantly. First because the time allowed is too little & you can't achieve much before having to drop the task and eventually you're clock watching because it's too long and you need to stop and rest but have more time left.
It means that throughout the day you are constantly being reminded you have ME and are limited by the clock watching. This is on top of the constant reminder of feeling so utterly awful that we have anyway. To a child this must be very punitive.
Keeping a diary, while I accept some find it useful for a while, can leave others frustrated and downhearted because it keeps you focussed on the symptoms instead of letting you focus on maximizing what you can achieve in a way that suits you. It reminds me of unnecessarily harsh, old fashioned dog training where the puppy's nose was supposed to be rubbed in it's "mess" as opposed to simply showing the poor dog what you wanted and encouraging him to do that.
As for family pyjama days - that sounds like a wonderful idea to me. Very bonding. If a family is supposed to go out hiking and biking etc, then why not sofa surfing. Isn't that why it's supposed to be called "life balance"? Or is avoidance of these sessions another way of penalizing the child - if you can't keep up with us, you'll be left alone.
Can't someone stop these people? They are a danger to sick children.
3+ decades of this and they are still doing the exact same things. Over and over again. Always identical. The same experiments or studies every damn time. Always asking the same questions. Always getting answers they don't like. Always spinning those answers to fit with the exact same conclusions they have started with, selectively framed out of cherry-picked bits. Always supporting the need to continue asking the same questions and writing the same conclusions. All because funding for this is limitless along with infinite tolerance for failure and neither oversight nor accountability.
I will say this plainly and bluntly: this is child abuse. Medical gaslighting is immoral with consenting adults. Most adults do not consent to this but are nonetheless forced into either complying or being abandoned, usually both, making it wildly more immoral. Children cannot consent or dissent. This is unacceptable, ethically, morally. I am disgusted by everyone involved in this, your conscience is stained.
You can drive a horse and cart through most of the papers quoted.
The concept of an asymmetric power relationship seems lost. When you have the very real consequences of failure to attend, an expectation of progressive, linear improvement , and so little understanding , diaries, questionnaires and responses are more likely to be tailored to expectations.
This is dire.
i never had the energy to fill in a daily diary if i did i am pretty certain that they would accuse me of symptom focussing damned if you do damned if you don't . the joys of having your cake and eating it seems to be the mainstay of these muppets .
Perhaps that is the real test. If you have sufficient energy and focus to comply with the expectations or demands, you don't have ME.
Bioethics is meanless to the authors and those who approved the study. We have measurable proof Graded Exercise Therapy causes harm.
We see CBT and GET as the treatments used in this study and only advice is being given. Did anyone see a medication list?
Did I misread something? What was medication being given to a child ages 5 to 7 years? Were medications disclosed as part of the treatments?
Was medical management related to medication given to a different child?
Amitriptyline is used on kids as young as 10.
Good grief that stuff is horrible and I’m a hefty adult still had sedation on 1 10mg tablet a day goodness knows what it’s doing to little kids.
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