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Medical constructions of long-term exhaustion, past and present; 2015; Lian and Bondevik
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Jonathan Edwards
Senior Member (Voting Rights)
A chilly analysis it seems.
Hoopoe
Senior Member (Voting Rights)
That is exactly what happened when as child, I first reported to my parents that I felt too exhausted and unwell to go to school.
It wasn't allowed to be real, it had to be psychological problem, something like a lack of willpower. The solution of course was to overcome this personal flaw with willpower. I remember being told that I had to learn to make an effort.
Obviously none of this made any sense, and if they had spent some time actually analysing the situation they would have quickly realized that, but they didn't. In their mind, the only possible explanation was this one and there was no need to think, listen or analyze.
It reminds me of the ideas behind graded exercise therapy. The basic idea is that the person is not ill, but flawed and must make an effort to overcome their flaws.
There was a paper from 1959 on recovery from mononucleosis. Apparently it came down to the strength of the ego. Strauss was sufficiently impressed to quote it. I don't have access to the full paper and am unable to comment on the role that might have been played by super-ego and id.
Hoopoe
Senior Member (Voting Rights)
ME/CFS seems to be an opportunity to learn something truly new about health. We have no idea what is wrong and why, and that means it's unlike any of the diseases we understand.
Society also needs to revise how it responds to such problems because what is has been doing is clearly not working. There is a lesson here as well.
Society also needs to revise how it responds to such problems because what is has been doing is clearly not working. There is a lesson here as well.
Arnie Pye
Senior Member (Voting Rights)
I can remember similar issues when I was in pain from a condition which was invisible. If it's invisible it doesn't exist and I'm making it up or lying or attention-seeking.
I can also remember being told (in my early teens) that I couldn't be depressed because children didn't get depressed.
rvallee
Senior Member (Voting Rights)
I would suggest that this is true to some extent but much more on the physician side and barely significant on the patient side. Aside from the recent nonsense about Internet-diseases-that-actually-predated-the-Internet-by-decades, the experience of most patients in this scenario is largely detached from culture as being ill has a sort of dissociative effect from the wider world, the same process that makes people sick with the flu pretty much miss out on whatever happened during that time.
Physicians, however, healthy and full participants in the wider culture, are very much influenced by those fads. Most people, let alone those who are too sick to function, do not care one bit about the current fads and currents of how illness is defined. It takes a particularly narcissistic perspective to think otherwise. Healthy people simply do not think about illness, it makes them too uncomfortable.
It's also notable that the more recent term of CFS was created strictly by physicians against the very strong opposition of patients. Hard to find a better example of an illness being defined entirely by physician perception against complete opposition by those it affects. The fact that this review was done through medical literature only emphasizes the point. It's a very insular description of culture, much navel-gazing that is the source of the fundamental attribution error that still overwhelms this disease.
This is a good example here:
For the most part the experience of patients is mostly limited to a sudden or gradual loss of health and function that leads to seeing a doctor only to be met with a range of helpless sympathy and outright mockery. It is a behavior that is wholly detached from culture as whatever is happening outside of our immediate surroundings when disabled by illness loses most of its coherence and importance. Most of us had never even heard of CFS, let alone ME, before we got sick and in my case it took years to first hear CFS.
It would be worth exploring that separation, especially as the perception within medicine seems to be exactly the opposite of reality. There's a tragicomic element to this idea of fads that are believed to be hot topics within the general population when in fact they are mere echoes in very insular chambers.
Physicians, however, healthy and full participants in the wider culture, are very much influenced by those fads. Most people, let alone those who are too sick to function, do not care one bit about the current fads and currents of how illness is defined. It takes a particularly narcissistic perspective to think otherwise. Healthy people simply do not think about illness, it makes them too uncomfortable.
It's also notable that the more recent term of CFS was created strictly by physicians against the very strong opposition of patients. Hard to find a better example of an illness being defined entirely by physician perception against complete opposition by those it affects. The fact that this review was done through medical literature only emphasizes the point. It's a very insular description of culture, much navel-gazing that is the source of the fundamental attribution error that still overwhelms this disease.
This is a good example here:
Neurasthenia was most definitely never a "fashionable" disease at any point in time outside of medical circles. So to speak of fads and fashion in cultural descriptions of illness is a very self-centered notion. It may have truly been "fashionable" within circles of physicians interested in the matter, because they mostly interacted with other physicians interested in the same, giving them the false impression of a wider cultural topic that in fact no one else but themselves were the least bit interested in. It's the logical fallacy of "people are saying", that because one's social circle is talking about something than it must be the talk of the town, which it most definitely is not.
For the most part the experience of patients is mostly limited to a sudden or gradual loss of health and function that leads to seeing a doctor only to be met with a range of helpless sympathy and outright mockery. It is a behavior that is wholly detached from culture as whatever is happening outside of our immediate surroundings when disabled by illness loses most of its coherence and importance. Most of us had never even heard of CFS, let alone ME, before we got sick and in my case it took years to first hear CFS.
It would be worth exploring that separation, especially as the perception within medicine seems to be exactly the opposite of reality. There's a tragicomic element to this idea of fads that are believed to be hot topics within the general population when in fact they are mere echoes in very insular chambers.
Obermann
Senior Member (Voting Rights)
Interesting. The article talks about socially contingent factors that govern the social construction of medical knowledge, but what they really are investigating is the social construction of medical uncertainty. Neither neurasthenia nor ME/CFS is well understood, and in my view it is questionable if neurasthenia is a distinct clinical entity. Even Prof. Simon Wessely admitted that—according to his own epidemiological study—it is the recognition of MS/CFS rather than the illness itself that is culturally induced.
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Greenfield et al.'s "Ego Strength and Length of Recovery from Infectious Mononucleosis"?
Sci-Hub link:
https://sci-hub.tw/10.1097/00005053-195902000-00003
From the Greenfield paper which found a statistical difference in some measures of 'psychological health' and recovery time from glandular fever in a relatively small sample of people.
...
At the age of 17, I got glandular fever (EBV confirmed) and shingles at the same time. I was off school for a week.
At age 10 I was off school for a year with what was diagnosed at the time as ME.
At age 47 or thereabouts, I got ME/CFS which I have had for 6 or so years.
Same person and, in my assessment, same personality and psychological health and a fairly low level of stress before each onset. Of course, as a person with ME/CFS, perhaps I cannot 'discriminatively perceive or respond to various physiological stimuli occasioned by the illness'.
...
At the age of 17, I got glandular fever (EBV confirmed) and shingles at the same time. I was off school for a week.
At age 10 I was off school for a year with what was diagnosed at the time as ME.
At age 47 or thereabouts, I got ME/CFS which I have had for 6 or so years.
Same person and, in my assessment, same personality and psychological health and a fairly low level of stress before each onset. Of course, as a person with ME/CFS, perhaps I cannot 'discriminatively perceive or respond to various physiological stimuli occasioned by the illness'.
1959 was a very bad vintage. Remember that it also produced Imboden, Canter and Cluff. Canter either tinkered with the existing ego scale or produced his own-I forget which. He had been a SigInt sergeant during the war and I wonder what his contact list was like.
It was of these studies that Strauss said in 1994, according to Hillary Johnson, that had he known about them when he started he would not have spent so much time trying to reinvent the wheel. Or words to that effect. Nonsense of course, and only to be uttered upon failure of one's experiments. A scientist might have wondered whether the findings were reproducible.
It was of these studies that Strauss said in 1994, according to Hillary Johnson, that had he known about them when he started he would not have spent so much time trying to reinvent the wheel. Or words to that effect. Nonsense of course, and only to be uttered upon failure of one's experiments. A scientist might have wondered whether the findings were reproducible.
rvallee
Senior Member (Voting Rights)
Well, isn't that almost identical to Eyesenck's theories. That turned out well. Wait, no, the opposite. The exact opposite.
