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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME 'help'

tiredowl

Senior Member
Messages
170
Location
Norway
https://www.theguardian.com/society...-syndrome-treatment-trial-success-netherlands

I have no words. Online psychological help? Success?
Hah, I was in therapy for years... I've gotten no way with this at all. None of my physical symptoms went away none of the fatigue either. Only thing I've lost is time.
It's not acceptable, just because they cannot find the explanation to ME/CFS doesn't mean they can just slap on ''It's a psychological issue''.
Laying in a dark room too fatigued to do much of anything, I'm sure that's going to be healthy for someones mind. We are literally trapped in our bodies. Just because someone find it unbearable, doesn't mean that all their issues were psychological to begin with. I'm sick of the mistreatment of ME people. It's absolutely disgusting.
 

tiredowl

Senior Member
Messages
170
Location
Norway
[Esther Crawley] has suffered verbal abuse from activists. “I cope most of the time,” she said. “Sometimes I think about giving up.”​

Let's keep up the good work here. Eventually she might actually quit!
I'm not sure she actually had ME at all.
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
I have no words. ... ... ...
Well chosen words though. There is coming some hope just from the netherlands now:
http://forums.phoenixrising.me/inde...y-and-cbt-get-now-optional.58341/#post-964652
[Esther Crawley] has suffered verbal abuse from activists. ... “Sometimes I think about giving up.” ... Eventually she might actually quit!
I have no sense either. She should give up for her own sake, or change mind in her very position if possible.
What I myself don´t like is trivialising or calming down things only because we wouldn´t understand their complexity yet. Here it´s actually a disregard not only of debilitated people.
:D:bang-head::thumbsup::rofl::balanced:
It´s not only a mistake but rather a misconception of thinking, which could be pretty dangerous.
 
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Snowdrop

Rebel without a biscuit
Messages
2,933
This so called 'help' is the FITNET trial by Esther Crawley --both the trial and EC are discussed at length here at PR and elsewhere.
Here http://www.virology.ws/2016/11/21/trial-by-error-continued-the-new-fitnet-trial-for-kids/ is what one of our respected advocates David Tuller has said about the FITNET trial.

To learn more about Crawley and the FITNET and other trials you can use the google site search box at the bottom of the forums page. Google site search is sub-headed under Resources.

Just input Crawley's name or her name and the FITNET trial to see more.
 

Hip

Senior Member
Messages
17,796
Psychologists like Esther Crawley who do ME/CFS research use dubious subjective metrics to measure the outcome of their psychological treatments.

A subjective metric is one where you ask the patient to report subjectively how they feel before, during and after the treatment. So in your study you may give the patient a questionnaire asking "how tired do you feel" and similar questions.

The trouble with such subjective metrics is that they rely on human introspection to assess the current state of mind, which is not very reliable, as state of mind is not measurable on an absolute scale. For example, I can tell you if I am more or less tired compared to yesterday (relative assessment); but I cannot easily place my current state of tiredness on any absolute scale.

Subjective metrics can also be easily manipulated and distorted by the mind-programming or positive-thinking techniques like CBT or the Lightening Process — techniques psychologists often use to treat ME/CFS. If you go for psychological treatment that tries to kind of hypnotize you into believing that you are not fatigued, then when you are asked to report on your tiredness level, you are likely ignore or underestimate your fatigue. That does not mean you are any less tired; it means your mind has been manipulated to under-report your symptoms.

This may be the reason some psychological treatments show mildly positive results: not because the patient gets any better, but because mind-programming techniques may get patients to ignore their symptoms.



The best metrics for measuring ME/CFS severity are objective ones. Don't ask a patient how they feel before and after a treatment, but instead ask them, for example, how many hours of useful activity they were able to engage in during the day. That is an objective measurement that does not rely on introspection.

Dr Martin Lerner's ME/CFS EIPS scale uses such objective measurement: it is based on the number of hours that a patient is out of bed each day (either sitting, standing or walking). Such objective scales cannot be manipulated by positive thinking techniques, nor do tjhey rely on introspection, and so are more reliable.

Or better still, you can use actimeters in your study to actually record activity and rest.
 
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percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
Subjective metrics can also be easily manipulated and distorted by the mind-programming or positive-thinking techniques like CBT or the Lightening Process — ...
Thinking positive can have good effects in my experience, especially in "pacing-situations", but indeed not on the long run in my experience, too. (This could easily be explained by NO, couldn´t it?)

Interestingly she said that the cause of me/cfs shouldn´t be understand in terms of psychology although the desease could be treated psychologically. This is somehow intelligent and not as deaf and overbold as to say it´s only in your "head".
But then one would expect even more her to be interested in how the whole life would have gotten better - in comparison to the life before with such compilations of symptoms difficult to judge at. I am still upset. And still I find such carelessness and rudness in respect to scientific method and humanity rather unbelievable. Luckily these discussions might vanish in the nearby future.
 
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