ME/CFS News

I used to post news and interesting information on ME/CFS but have retired to focus on other things.

[ME/CFS News @MECFSNews]

@sunsopeningband @dysclinic To him, the mind-body approach seems like a miracle we all ought to believe in more.

[ME/CFS News @MECFSNews]

It's not difficult in a research setting to change a person's perception of their symptoms, their beliefs. One mistake the psychosomatic approach is making is assuming that changing these is equivalent to having changed the illness.

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@AlanLevinovitz mind-body approaches intentionally aim to change the illness-related beliefs of the patient. Beliefs such as "If I exceed my activity limit my symptoms are likely to worsen for some time", "I'm disabled", and "There is no treatment".

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In my opinion the existing research is consistent with the idea that attempting to cure the illness by changing the illness-related beliefs and identity doesn't work.

It leads to a change in illness-related beliefs and identity but not a reduction in disability.

[ME/CFS News @MECFSNews]

@DrKrisEdward @hannahspierMD It's a bit like the story about cancer and positive attitude: of the course the people with optimism survive longer, because their optimism reflects what they're told about prognosis.

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@DrKrisEdward @hannahspierMD It seems common sense to me that what you call illness identity is an indicator of illness severity.

When the problem is mild, people won't be bothered much by it, and won't spend much time thinking about it and forming beliefs and habits intended to manage the problem better.

[ME/CFS News @MECFSNews]

The psychosomatic approach also often explicitly aims to change the identity of the person. The various illness related beliefs are seen as bad. There are parallels to conversion therapy here.

[ME/CFS News @MECFSNews]

The painful truth about psychosomatic hypotheses is that patients, doctors and the public are willing to suspend rational thinking and believe in miracles when they can't cope with the negative emotions they experience when confronted with unexplained disabling illness. #mecfs

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It also leads to low standards in research and excessive enthusiasm for research findings that aren't reliable or meaningful.

There has been a shift towards more skepticism and attention to quality and reliability of #MECFS research, which I find very encouraging.

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@AlanLevinovitz @jimcoan @TaylorLorenz At different points in my illness I believed that I was on the road to recovery. I always relapsed. In retrospect I recognize that there was some wishful thinking that exaggerated the actual improvement.

From personal experience I don't think these stories mean much.

[ME/CFS News @MECFSNews]

@AlanLevinovitz @jimcoan @TaylorLorenz Do you know what the natural recovery curve of postviral fatigue looks like? Most people get better within a few years.

The illness is fluctuating and there can be periods where it is mild. This happens in other illnesses as well.

Spontaneous remissions can also occur.

[ME/CFS News @MECFSNews]

@jimcoan @TaylorLorenz The brain retraining stuff is a less mainstream formulation of the same ideas, with even less evidence.

[ME/CFS News @MECFSNews]

@jimcoan @TaylorLorenz We already know exposure therapy is ineffective in ME/CFS. It was the dominant paradigm for a while but proved incapable of delivering credible results.

Alan doesn't understand the topic well enough to write about it.

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@LongCovidAdvoc It's good to discuss the validity of psychological theories. They shouldn't be something that everyone must believe in and never question.

[ME/CFS News @MECFSNews]

@AlanLevinovitz @WIRED If the underlying illness has improved or resolved, and the "illness identity" with all its beliefs and habits remains, then it's useful to adapt to the new reality. But it doesn't mean that changing beliefs causes a recovery.

[ME/CFS News @MECFSNews]

@AlanLevinovitz @WIRED When an illness fluctuates or when someone gets better due to natural recovery, it's human nature to want to believe that this happened because of whatever treatment or approach they tried. People want to feel like they possess agency and control over the illness.