Comments on energy conservation treatments for MS-related fatigue and a new proposal, 2024

rvallee

rvallee

Senior Member (Voting Rights)
Comments on energy conservation treatments for MS-related fatigue and a new proposal
https://www.sciencedirect.com/science/article/abs/pii/S0022510X24001758

Highlights
  • We propose that fatigue in MS involves a sensory component reflecting the state of the immune system.

  • The predetermined consequence of this feeling is a reduction of behavior.

  • The main treatment goal is to learn a strategy to distract attention from the feeling of fatigue.

  • The second step therefore includes graded exposition by executing the fatigue-reducing strategy.

  • A central element of the treatment should be a systematic reconditioning program to enhance fitness.

Abstract
Psychological treatments of MS-related fatigue mostly depend on energy conservation programs. We argue that the evidence for energy conservation training is weak – in contrast to some reviews on this topic. The reasons for our concerns are the use of informed passive control groups allowing negative placebo effects, the lack of predefined primary outcome parameter, statistically rather than clinically significant effects, and the use of insensitive fatigue questionnaires. We propose to base psychological interventions not on a view of fatigue as a constant loss of mental energy but as a subjective representation (“feeling”) of an inflammatory state, which draws away attentional capacity. This conceptualization allows to develop a three-step treatment approach: Getting short-term control on fatigue, extinction to reduce fatigue-related avoidance behavior, and a systematic increase of activities by pacing. Our proposal depends on the techniques, that can interrupt ongoing feelings of fatigue and can serve as a basis for extinction. We propose that Progressive Muscle Relaxation might be such a technique. The advantage of our model is that it shares similarities with well-established treatments for phobias and chronic pain and we discuss the shared set of assumptions. Hopefully, this will help to improve the treatment of fatigue in future.
 
Seems to rehash most of the usual tropes, this time focusing mostly on distraction, but with the same "fear-avoiding" and reconditioning from generic rehabilitation, based on nothing at all. As is pointed out, despite not being of much interest to clinicians, fatigue is the most disabling symptom of MS.

The proposed treatment is Progressive Muscle Relaxation, for some reason, which consists of flexing muscles, then relaxing them. As exercises go, this is impressively random. They even cite pacing incorrectly as increasing activity. Words and their meaning, who cares, right?

Basically, they don't have a clue what fatigue is and have a bad idea to not fix it. There is citation not on the abstract for "Progressive Muscle Relaxation (PMR) is effective in reducing MS fatigue", so who knows where they got this idea, but, hey, they're saying it's effective so who even needs to test it, right?

Bit funny that they admit that their entire basis for this is assumptions, overlapping with phobias, for some reason, but after decades of lowering the bar, the bar has been buried deep underground and no one even bats an eye at statements that should be an automatic fail in any intro class.
 
The main treatment goal is to learn a strategy to distract attention from the feeling of fatigue.
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Next they'll be advising A&E staff to shout "Ooh look, a squirrel" when people come in with dislocated shoulders.

I'm starting to regard this approach as a deliberate disinformation campaign, akin to people with extreme views who disrupt and distort mainstream politics. I think I've given them the benefit of doubt for quite long enough.
 
I’ve known personally two men with MS for whom the disease took their health in youth, they needed 24 hour care and had to move into care homes as they lost the ability to swallow.

I would like to physically demonstrate to these people how their approach comes across.

But I won’t because it’s really beyond the pale when researchers reap what they sow isn’t it?

Also tbh my physical capacity for retribution seems to be somewhat diminished at present for some reason or other, a lack of distractions perhaps…:rolleyes:
 
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Kitty said:
Next they'll be advising A&E staff to shout "Ooh look, a squirrel" when people come in with dislocated shoulders.

I'm starting to regard this approach as a deliberate disinformation campaign, akin to people with extreme views who disrupt and distort mainstream politics. I think I've given them the benefit of doubt for quite long enough.
Click to expand...
If it’s not science with testable null they are open to properly happening and being interested in then that’s precisely what these are

people being these days allowed to use academic publications as a platform for manifestos selling bigotry

these aren’t even ideas any more as they aren’t new or smart it’s just bigotry of people who don’t want to hear understand or acknowledge reality so use media to distort to what they want

man’s it’s behavioural psychology they do but in the literal sense not the fake therapy they use to conceal it: a belief that if you are vicious to ill people they’ll go away and get out of your face. And a lack of care whether that closes the window on them being mostly independent and productive vs their potential (which as a % of their talent could be more than norms offer) or destroying them.

because I think they also know they are selling to ‘the rat race’ so it’s not about ‘society’ or don’t step on someone’s heel so they can move but about selling that you can get away with trampling and judging and manipulating others to have to hurt themselves to be acceptable

The whole distract from pain or sensory stuff if recent years seems the most sicko or sadistic of the things I’d seen if recent years. It takes a certain type to tell themselves that lie in the face of seeing the pain it causes.
 
Kitty said:
I'm starting to regard this approach as a deliberate disinformation campaign, akin to people with extreme views who disrupt and distort mainstream politics. I think I've given them the benefit of doubt for quite long enough.
Click to expand...
Yep. They and their shitty methodologies have been indulged for far too long, and yet still are.

As I have said a number of times before, the real question now is not what they are doing, but how they keep getting away with it.
 
SNT Gatchaman said:
See also Fatigue acts as a distractor in monotonous and dual attention tasks in patients with multiple sclerosis but not with long COVID (2024, Neurologie und Rehabilitation)
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I think distraction might be different concepts in the two papers?

In the one here, the idea seems to be that people with fatigue can think about other things and that distraction will result in less fatigue. Whereas in that linked paper about MS and LC, I think they are suggesting that cognitive fatigue distracts from the attention required to perform well on two cognitive tasks. 'Detracts' is probably a better word than 'distract' for that latter idea.
 
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