Which paper said CBT/GET should encourage participants to no longer see themselves as CFS patients

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
I think I remember that one of the CBT or GET trials actively encouraged participants to no longer regard themselves as CFS patients. I thought I was confident it was the Dutch team of Bleijenberg and Knoop as they aim for a full recovery. But going through their papers, I can't seem the find it. Anyone happen to know what I'm searching for?

Many thanks in advance,

(I've added this thread to the tag "who-said" which seems intended to help others find references of citations or papers they know exist but can't seem to find at the moment).

[Edit: I initially wrote "to longer" regard or see themselves... both in this post and the title. I meant "to no longer" regard themselves. Thanks to @MeSci for pointing this out.]
 
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Getting Rid of the Patient Label

Many patients find it hard to stop seeing themselves as patients. The term chronic fatigue syndrome already seems to imply a permanent condition. The fact that many CFS patients have been suffering from symptoms for quite some time before they are referred for CBT does not contribute to their developing an optimistic outlook as far as a full recovery is concerned. In addition, patients who are referred to a psychotherapist for CFS generally assume that they will learn to cope with their complaints rather than learn to perceive themselves as healthy individuals again. This is why shedding the “patient” label should be one of the first points on the treatment agenda. In the final phase of the treatment this point is raised again when the patient is asked what he thinks still needs to be done before he can replace the marker reading “patient” by a label indicating “healthy.” The response of healthy individuals who are suffering from all kinds of flu-like symptoms will be quite different from the reactions of CFS patients, who, when they are incidentally experiencing symptoms again, will usually interpret signals from the body as symptoms of CFS instead of normal and temporarily fluctuations of the body.
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The purpose of the follow-up sessions is to discuss with the person involved, now the “expatient,” how he or she has dealt with fatigue. Has the individual learned enough to tackle any recurring symptoms? Here, the follow-up sessions mainly take the shape of revision lessons or a refresher course. The therapist reinforces the ex-patient’s positive approaches toward fatigue or behaviors that have helped prevent extreme symptoms. Far better still, the therapist should have the ex-patient reinforce himself and thus help to establish a positive sense of control.
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Bazelmans E, Prins JB, Bleijenberg G. Cognitive behavior therapy for relatively active and for passive CFS patients. Cogn Behav Pract. 2006;13:157-166.
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It's really remarkable how completely dumb this all is when they drop the pretense and say what they actually mean. What a load of nonsense.

The stupid is seriously on par with the worst of Facebook conspiracy groups. You can teach smart people but you can't make them wise.
 
I found that paper very interesting as it shows how deluded they are and how they clearly don't listen to patients. I really don't believe that there are many patients who could increase activity this quickly:

Because passive CFS patients are hardly active anymore, they start their activity program as soon as possible. Most of them will choose walking as a buildingup activity. The directive here is to start with a 1-minute walk six times a day. Every day the walking time is increased by 1 minute. So, for example, the first day the patient has six 1-minute walks, the second day six 2- minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day, allowing the patient to skip a day or to refrain from raising the duration. Recording the activity on a graph provides the patient with positive reinforcement about his progress.
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Also, I've heard people say that while they could understand the graded exercise therapy could harm someone, CBT is just talking and so couldn't. This is an extract from a CBT manual:
Because passive CFS patients are hardly active anymore, they start their activity program as soon as possible. Most of them will choose walking as a buildingup activity. The directive here is to start with a 1-minute walk six times a day. Every day the walking time is increased by 1 minute. So, for example, the first day the patient has six 1-minute walks, the second day six 2- minute walks, the third day six 3-minute walks, and so on. The aim is a total build-up of 5 minutes a week for each walk a day, allowing the patient to skip a day or to refrain from raising the duration. Recording the activity on a graph provides the patient with positive reinforcement about his progress.
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CBT and coping - how does one cope with ME, stigma, ghastly, and cruel friends and family, small and large problems normally encountered in life, sick family members, sick pets, broken vehicles, disability structures that are dreadful, reduced income, medics who don't understand, don't believe, and can't provide treatment anyways, politicians who are complacent and uncaring, a medical education structure that has never heard of ME, and immediately slots pwME into MUS?

Yeah....CBT will help with al that! Sure!
 
The response of healthy individuals who are suffering from all kinds of flu-like symptoms will be quite different from the reactions of CFS patients, who, when they are incidentally experiencing symptoms again, will usually interpret signals from the body as symptoms of CFS instead of normal and temporarily fluctuations of the body.
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Um yeah ok geniuses and what if the non-patient patient has 'incidental' flu-like symptoms all the time or every time they exert themselves like by walking around the block? Normal and temporary fluctuations of the body my ***.
 
It's a case of "existence precedes essence".

This reminds me of the difficulty we have over the word "fatigue". We all agree that there is something in need of description but cannot agree on the adequacy of the word. The sensations are still there whatever we do, or don't, call them.

It seems impossible to have discourse with these people. They are clearly from a different planet.
 
Dolphin said:
I found that paper very interesting as it shows how deluded they are and how they clearly don't listen to patients. I really don't believe that there are many patients who could increase activity this quickly:
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You mean in just one year of treatment I won't be taking six four-hour-and-twenty-minute walks per day? Maybe if I run I can fit it all in.
 
DokaGirl said:
CBT and coping - how does one cope with ME, stigma, ghastly, and cruel friends and family, small and large problems normally encountered in life, sick family members, sick pets, broken vehicles, disability structures that are dreadful, reduced income, medics who don't understand, don't believe, and can't provide treatment anyways, politicians who are complacent and uncaring, a medical education structure that has never heard of ME, and immediately slots pwME into MUS?

Yeah....CBT will help with al that! Sure!
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Oh, that's easy, you just use some positive affirmations and jump on a circle for a bit. Works a treat, there's a paper about it and everything. Just fish out a couple of thousand from down the back of the sofa and Phil will teach it you.
 
Dolphin said:
I found that paper very interesting as it shows how deluded they are and how they clearly don't listen to patients. I really don't believe that there are many patients who could increase activity this quickly:
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This is so ridiculous. I already walk for 3-5 minutes about 5-10x per day because otherwise I get too much pain in my legs. I move slowly but I know it's important. I also stretch 2-3x per day for the same reason. In the winter I have no choice but to shovel snow. Only on my worst days do I lower this but even then I try as much as I can within my tolerance.

These people are idiots. They make assumptions they don't bother testing, which is the extremely complicated process... of asking directly and actually taking note of what is said, and they'd know they are full of it.

Patronizing idiots.
 
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