snowathlete
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No, not speaking to you directly Barry - or anyone else - just a general point. Sorry for any misunderstanding.
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Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri
- Thread starter Yogi
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No, not speaking to you directly Barry - or anyone else - just a general point. Sorry for any misunderstanding.
Snow Leopard
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Deconditioned healthy people feel pain after doing a sufficient amount of physical activity over and above what they are normally used to. Deconditioned healthy people do not feel fatigued all the time, do not have constant headaches and muscular pain, do not have problems concentrating and so on.
What certain medical professionals don't understand is the fatigue that healthy people feel after exercise is not the same as the fatigue we feel - we have a constant sensation of fatigue when we do nothing adn when we exert ourselves the PEM symptoms that start a day or so later do not feel the same as that which healthy person whom overexerted themselves would feel. PEM is validated objectively as a loss of exercise capacity, a day after exercising, notably with lower ventilatory threshold. This is not found in healthy people doing a comparable amount of exercise. So it is not merely a sensation of fatigue, but has an effect on our ability to exercise too.
It is sad that so many medical professionals have not bothered to ask patients to test whether their idea of what patients are feeling is in fact what patients are feeling.
What certain medical professionals don't understand is the fatigue that healthy people feel after exercise is not the same as the fatigue we feel - we have a constant sensation of fatigue when we do nothing adn when we exert ourselves the PEM symptoms that start a day or so later do not feel the same as that which healthy person whom overexerted themselves would feel. PEM is validated objectively as a loss of exercise capacity, a day after exercising, notably with lower ventilatory threshold. This is not found in healthy people doing a comparable amount of exercise. So it is not merely a sensation of fatigue, but has an effect on our ability to exercise too.
It is sad that so many medical professionals have not bothered to ask patients to test whether their idea of what patients are feeling is in fact what patients are feeling.
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It never makes any sense to anyone with a grain of sense.
The Eskimos have a hundred words for snow, the Greeks have a hundred words for love and the English have a hundred words for rain. Doctors have a single word for a hundred different ways of feeling ill and awful - fatigue.
I used to know fatigue as the feeling I had when I was active and healthy but at the end of a 14 tour on North Sea oil platforms doing 14 shifts of 12 hours plus overtime and sometimes getting dragged from my sleep to fix the computer system in the middle of the night as well.
What I feel now is not fatigue, it is nothing like fatigue, I don't recognise it as fatigue. And there are words that can be used - malaise, illness, drained, exhausted, ****ed, broken, run-over, empty, aching, brain-fogged and all the other words people choose to use for themselves.
So why do doctors stick with fatigue and tiredness? They don't have to worry about a little tiredness, fatigue is the state of the modern world. They mean if they don't recognise us as ill, then they don't have to do anything. They feel happy writing a prescription for fluoxetine and then for other antidepressants when the first didn't work. They feel happy telling you to get some exercise, exercise is good for people, they forget that you have already told them that you have had to give up cycling or running or rock-climbing. They seem blind to your explanation that you are asking for help because you cannot do these things any more.
If they let on that they had heard us tell them, they would then have to do something.
[edited to fix the typos that don't show up when I proof read, but are only visible once the article has been posted.]
Invisible Woman
Senior Member
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I have said almost exactly this to nearly every doctor I have seen. I also refuse to use the term "tired".
Years ago I ran a project and part of it involved merging different systems and data streams. Before we started I did a little due diligence exercise.
I asked two depts to define what they meant by "forecast". Exactly what figures were used to develop their "forecast" & where they got them from. The depts had slightly different meanings & different sources for the same term. Neither of them had been aware of this before.
In a large company that consolidates data as it goes up the chain this could lead to seriously inaccuracies.
In healthcare it promotes/leads to the confusion and abuse that has been inflicted on our vulnerable community.
dangermouse
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This.
Yep.
Powell et al’s 2001 RCT is interesting in this regard. It’s entitled “Randomised controlled trial of patient education to encourage graded exercise in chronic fatigue syndrome” (Oxford definition). It’s one of the trials considered as evidence for GET by the Cochrane review.
The paper begins with the sentence “Patient beliefs are based on evidence they find convincing.” They go on to explain that CFS patients believe they have a physical disease, and that this belief is associated with poor prognosis. The next step in the story is that even though “extensive research has failed to identify any serious underlying pathology”, patients do have “disrupted physiological regulation” in the form of circadian dysrhythmia, deconditioning and sleep abnormalities.
GET is then sold as “educating patients about the medical evidence of the physical and psychological effects of physical deconditioning and circadian dysrhythmia, with the intention of encouraging a self managed graded exercise programme”.
“cognitive behaviour therapy is expensive and carries the risk of deterring patients who are fearful of contact with mental health workers”
They’re specific about not broaching anything psychy early on; first physiological explanations are given for symptoms, then a graded exercise programme starts, and only then can psychy things be mentioned: “Once patients were successfully engaged in treatment, the role of predisposing and perpetuating psychosocial factors was discussed.” Bait and switch?
They report how most patients’ beliefs about the cause of their condition changed after treatment. “Only 15%...reported that they had believed that their condition was related to physical deconditioning at baseline whereas 81%...believed this after treatment.”
“Our intervention requires fewer sessions that cognitive behavioural therapy and could be carried out by a clinician without advanced training in psychological therapies.”
“What this study adds: Patients given physiological explanations for their symptoms and encouraged to do graded exercise were significantly better than those who received standardised care at one year. The approach may be as effective as cognitive behaviour therapy but is shorter and requires less therapist skill.”
It’s clear that graded exercise, for Powell and colleagues, is simply an alternative to CBT. The goal is to change patients’ beliefs. Exercise is simply the mechanism by which that is achieved. They see potential advantages of GE over CBT as: cheaper, more acceptable and doesn’t need to be done psych professionals.
trishrhymes
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Whereas certain psychiatrists beliefs are based on what will advance their career and satisfy their insurance company masters.
If we just remove the "belief" nonsense inserted by the psychs, this sentence would read:
Which is in fact the case. Psychs whose belief system involves believing that everything is a question of belief, and who insist on projecting these beliefs onto our illness, are causing an unbelievable amount of harm.
Esther12
Senior Member
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The evidence that we have indicates a poor prognosis... but a lot of that evidence isn't very good. I feel wary of describing almost anything about 'CFS' as a fact! The 'physical illness' thing can be a pain to define too, and only really matters because of the legal issues, and the way exaggerated claims abot the role of psychosocial factors have led to patients being mistreated.
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If you ain't dead, it ain't serious.
Or the long version, it's CFS and that isn't serious, it's just tiredness, so any pathology found cannot be serious either.
Why cite anything when you can just gloss over and regard it as a statement of the bleedin' obvious?
Me too, especially since it was written in 2001!
Tom Kindlon
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