Symptom perceptions, illness beliefs and coping in chronic fatigue syndrome, 2009, Moss-Morris

[Kitty]

CBT is often promoted for MS based on the same faulty models about fatigue.

Sorry, I wasn't clear—I meant promoting brain training on the grounds that it has "helped thousands of people recover".

For which, of course, they can provide no meaningful evidence.

 

[Utsikt]

Sorry, I wasn't clear—I meant promoting brain training on the grounds that it has "helped thousands of people recover".

For which, of course, they can provide no meaningful evidence.

Ah, that makes sense. Thank you for clarifying.

 

[rvallee]

I have not heard of a mainstream psychological therapy that advises their clients to say they are safe, in their mind, and this "retrains" their limbic system to stop symptoms

Treatment for severe phobias would probably be the closest to this? The fear response can be quite intense in some cases, certainly a lot of autonomic response: shaking, sweating, dizziness, tachycardia, and so on.

Do you know the state of research in this? Basically this should be the gold standard they can refer to, it certainly should involve the same ideas, techniques, and assessment? I mean if it's all about fears, surely phobias must be the 'ground truth' process here. But I don't think I've noticed any of this yet, at least not on the forum.

 

[rvallee]

You can just imagine the response if they tried to make these claims for fatiguing conditions such as Parkinson's or MS or lupus. I don't know why we're considered fair game for their magical thinking, but hopefully they're starting to realise we're not that easy to take advantage of.

There are definitely attempts at that. Here and there. And growing. The difference is entirely in medicine's perception of the diseases, and the fact that for those, this is considered alternative and a means of support, instead of us, where it's made to be all of it.

Plus for respected diseases, trying to objectively assess the state of disease markers following 'mindfulness', or whatever, would obviously yield nothing, so the real researchers aren't interested in it, and the psychobehaviorists also won't make the mistake of debunking themselves. So it remains at the level of speculative assertions through pilot trials and biased questionnaires, which is only a problem if it's all there is.

 

[rvallee]

In my experience as someone with a number of pain and painful conditions, I have found that there are times when distraction works better, and others when noting the pain is the way to go, and others when painkillers are the only solution.

Distraction features large in 'mind-body' pseudoscience, and it has some merit for minor senses, and problems that do subside on their own (e.g. recovering from addiction), but the idea that people can be distracted all the time is just so absurd it almost sounds like something a machine would come up. It's not realistic to live in a human body for any number of years and think this makes sense.

People can't be distracted all the time. Obviously. It becomes exhausting. And it makes doing things more difficult, such as working. And how does one relax? What about falling asleep? Or resuming sleep if you wake up during the night? Some people fall asleep easily, but when dealing with pains or disabling symptoms it becomes very difficult, so if you add up trying to distract ourselves to it? Good grief. This is not what living in a human body is like.

 

[oldtimer]

Distraction features large in 'mind-body' pseudoscience, and it has some merit for minor senses, and problems that do subside on their own (e.g. recovering from addiction), but the idea that people can be distracted all the time is just so absurd it almost sounds like something a machine would come up. It's not realistic to live in a human body for any number of years and think this makes sense.

People can't be distracted all the time. Obviously. It becomes exhausting. And it makes doing things more difficult, such as working. And how does one relax? What about falling asleep? Or resuming sleep if you wake up during the night? Some people fall asleep easily, but when dealing with pains or disabling symptoms it becomes very difficult, so if you add up trying to distract ourselves to it? Good grief. This is not what living in a human body is like.

I agree, simple things like distraction etc wouldn't work at all for my chronic pain. It's laughable.

I would have thought a protocol for managing pain must first establish what sort of pain it is dealing with. It appears these brain retraining type methods don't even take that into account.

I've reached the spluttering with outrage stage. It doesn't surprise me that charlatans and the brainwashed believers rush to fill the gaps. Humanity is bloated with the greedy, the power hungry and the gullible.