ClinicalTrials.Gov: Rehabilitation of Adolescents Living With Chronic Fatigue (2019 Protocol for 2021 trial completion)

Kalliope

Kalliope

Senior Member (Voting Rights)
Abstract
Previous studies have shown that health‐related quality of life (HRQoL) in adolescents living with chronic fatigue syndrome (CFS/ME) is low if compared with healthy adolescents and adolescents living with other chronic diseases. Effective strategies to improve HRQoL in this group are still lacking. Recently we have observed HRQoL in a group of Norwegian adolescents with CFS/ME (not yet published), which is the background for a new study where we have planned an intervention with health promoting dialogues between patient and nurse, as a strategy to improve HRQoL. In this study we have also opened to include adolescents with other chronic fatigue diagnosis with similar challenges in follow‐up as in CFS/ME.

https://www.cochranelibrary.com/central/doi/10.1002/central/CN-02010179/full?highlightAbstract=me|withdrawn|cfs&fbclid=IwAR35NSb8IiSCATFnYGCW04NAmrxPkP8DOnXWN0MuWzHdzmBhV56BlcRjzIs

Only the abstract is available, but a bit more information about this is to be found at ClinicalTrials.gov
https://clinicaltrials.gov/ct2/show/NCT04177459
 
A quick scan shows the primary focus the symptom of fatigue & the assumption that mixing those with chronic fatigue and chronic fatigue syndrome is a-ok. What could go wrong?

Once again, death by questionnaire. Those unable for whatever reason to take part in the "dialogues" or fill in the questionnaires are excluded. Your more severe patients.

One of the follow up outcomes is self reported school attendance, but also participation in leisure activities. I suppose that's something.

Overall this looks exactly like a yet another piece of meaningless behavioural research to me looking at fatigue not ME.
 
So they are deliberately muddling together young people with CFS and CF in the same study diagnosed simply on the basis of fatigue. How do they get away with that?

Here's the description of the intervention:
Behavioral: Health promoting dialogue

Health promoting dialogues based on the salutogenic theory, focusing on resources within and around the individual, and on coping strategies. Seven individual dialogues for each participant, individually adapted due to the fatigue. The intervention is offered in the participants home or at the local hospital, dependent on the participants fatigue and what is preferred.
Click to expand...
 
Wyller claims fatigue is just a spectrum, with ME on the furthest end.

I feel there is a shift now in the rhetoric as GET/CBT has been so criticised. Suddenly the interventions itself are not so important anymore, but the message is still the same: the key to rehabilitation and recovery lies within the patient him/herself.
 
I love that precisely 7 dialogues are required, albeit individually tailored. What the hell is that about?

Increasingly I wonder if these guys have a bet on. How much can they get away with before someone in their healthcare system or government cops on to the fact they're being ripped off on a massive scale.
 
There are literally dozens of identical trials such as this one. Why is anyone pretending this is new or untested? The very reason why HRQoL is still this low by now is precisely because of garbage pseudoscience like this. YOU are the problem, or 99% of it anyway.

And why, oh why, after decades of research and clinical practice, is this field completely exempted from ever having to use objective outcomes? Doing the same things in a loop for decades and avoiding objective measures like the plague is just malpractice.

Though at least HRQoL is a significant measure so I wonder how they will twist the results to explain no change in this outcome. Maybe only reporting some mental health dimension while ignoring all the others? Almost guaranteed they end up swapping primary and secondary outcomes, at this point it's basically standard practice.

ME has one of the lowest recorded HRQoL. It is malfeasance to condemn millions to this nonsense based on a bunch of freaking questionnaires. And coercively against consistent dissent.
 
Invisible Woman said:
I love that precisely 7 dialogues are required, albeit individually tailored. What the hell is that about?

Increasingly I wonder if these guys have a bet on. How much can they get away with before someone in their healthcare system or government cops on to the fact they're being ripped off on a massive scale.
Click to expand...
At this point, I don't even think it would be possible to tell the difference if that were the intent. The escalation of commitment here has gone so far off the rails.
 
Salutogenesis is a medical approach focusing on factors that support human health and well-being, rather than on factors that cause disease. More specifically, the "salutogenic model" is concerned with the relationship between health, stress, and coping.
Click to expand...
I have no idea why they use this instead of BPS, they mean the same thing. I guess it's to create one tiny distinction?

What a bunch of nonsense: The Handbook of Salutogenesis.

Good grief, it's literally the fake pseudoscience they invented for the movie Donnie Darko:
According to Antonovsky health was seen as a movement in a continuum on an axis between total ill health (dis-ease) and total health (ease).
Click to expand...
fear-love.jpg
 
Kalliope said:
Wyller claims fatigue is just a spectrum, with ME on the furthest end.

I feel there is a shift now in the rhetoric as GET/CBT has been so criticised. Suddenly the interventions itself are not so important anymore, but the message is still the same: the key to rehabilitation and recovery lies within the patient him/herself.
Click to expand...

Ye all they have to do now is work out WTF that mysterious thing is within each patient then when they have done that they can run a trial on it.

Until such a time they can just put the mysterious thing into practice untested.
 
From the link to The Handbook of Salutogenesis in @rvallee's post #11 above

In its more general meaning, salutogenesis refers to a scholarly orientation focusing attention on the study of the origins of health, contra the origins of disease. Salutogenesis—model, sense of coherence and orientation—is in harmony with developments across the social sciences that seek better understanding of positive aspects of human experience.
Click to expand...

Right. So as those "bastard" patients don't want to get better and the science is much to hard. Rules and whatnot, even if they're usual twisted to suit. We'll ignore all that. Yeah, just teach them to be healthy instead. Sure.

Ah, well if it's in harmony with development across social science.... That sounds kinda sciency. Good enough.

Have we all been drugged, kidnapped and put into some fake world as a social experiment or cruel joke?
 
You must log in or register to reply here.
Back
Top Bottom