A Norwegian team looking into Long Covid ME/CFS formulated a quite good (but still somewhat flawed) questionnaire for quantifying functional disability that Post Exertional Mailaise (PEM) causes. Its called Funcap and there are two forms, 27 and 55 which are the number of questions. There is a publicly available SPA for this https://raffbenato.github.io/funcap55/ which will give you a good idea of the level of debilitation someone scoring 1 is dealing with.
Funcap maps fairly well to the mild,moderate, severe and very severe descriptions that have been historically used and its fairly precise and improvements of 0.5 are very measurable. Its not popular yet but it should be its probably the best functionality questionnaire.
In regards to linguistics there is a real issue with people who have never had a sensation understanding someone else describing it. ME/CFS is 4 symptoms and a few other groupings of them under the Canadian Consensus criteria but a lot of focus is put on fatigue and PEM. But the fatigue is not something someone who doesn't have the disease could understand. Its not tiredness like not sleeping enough, its somewhat more like the worst flu you ever had and made you want to stay in bed (which most people have not experienced) but its still underplaying the muscle weakness and lack of stamina and general feel of unwellness that encompasses this fatigue, its like all the cells in the body have no energy. There is simply no way to express this and have someone understand how debilitating that is and the consequences for breaching capacity, which make ME sufferers worse sometimes permanently. We just don't have the words or really the understanding because while many biological issues have been found nothing has yet been accepted as a biomarker of the condition.
People (even from the same culture, with the same native tongue) use words differently. It is one of the reason for which I am mildly skeptical about all such things as "How happy you are on the scale 1-10?" - no matter what is the sample size (it could be a billion), it depends on one's inner definition of "happy" and on the numbers attached to it.
Words are virtual. At the same, experiences are real. Also, real is their impact of our lives. "A headache" can be anything for from a slight discomfort, to something crushing, putting in a blank stare. It can be of various lengths, various frequencies, impacting us in various ways. Both matter.
> I want practitioners and researchers to help us name things so that they can measure them, and so that those measurements can be accurate reflections of our internal realities.
I think it is one of things where LLMs can shine - by translating one's own notes, ones own recordings of everyday life, into a summary.
This used to be a bottleneck - so people HAD to resort to some questionaries (binary or Likert scale), to make it quantitative. Now we can automatically process actual text. (It was possible before, to some extend, with simpler models like word2vec or Latent Dirichlet Allocation), but with LLMs we can actually get the full context, not only look for keywords, their groupings and associations.
I think words are less the problem so much as evidence. The symptoms of chronic conditions kind of are what they do.
Maybe you could say something like: I planned to complete five items on this list today and only completed one, because I was too fatigued to continue and could not complete another item despite telling myself to do so or attempting to engage in the activity. This creates a goal-outcome gap in language. This is useful but the real problem is it's still open to challenge in terms of intangibles like motivation, work ethic, whether you deliberately set yourself up to fail to make a point etc. even if you have diagnostics to back it up.
But I think this is telling of a deeper truth in those cases: others considering you a burden and looking for excuses to lighten themselves of that burden. At some point there's no convincing someone who selfish in that way to believe something which they perceive to have consequences against their own interests.
We live in these ideologically competitive western societies, and at some point the tension between organisations' perception of their own competitiveness overrides the societal pressure to support people with problems into work.
That being said if someone with a chronic disease has evidence like a diagnosis and that's linked to studies backing up their condition and others are listening to accusations on the basis of unfalsifiable intangibles then at some point you have to consider those without evidence are probably not acting in good faith. This is really relevant when it's an employer, for example, but it comes up in e.g. politics a lot as well where it comes to taxpayer spending etc.
Edit: maybe there is a potential term in there like "supportphobia" to describe actions/speech which is designed purely to free an individual or organisation from the burden of supporting those with legitimate conditions.
Nevertheless I think goal-outcome gaps like that are pretty useful to explain what's going on. Especially if the goal is something simple like "staying awake for a normal period of time" and yet you find yourself falling hard asleep in the middle of the day despite having slept well for well over a week beforehand.
Not just chronic illness, but any viral illness is hard to describe and does not have reliable biomarkers. You wake up feeling lousy. Your family can tell because maybe your voice is deeper than normal, but a medical professional would not be able to tell you are sick. I feel "inflamed", "off", "not well", "less vigorous", you know, "sick".
Those afflicted with hypochondria spend 10x more on health care than the average individual, according to this article. May be a relevant driver for health care costs, and thus insurance costs. I’ve heard that every medical student at some time in their education becomes a hypochondriac after learning all the failure modes of the human body.
I was diagnosed with Celiac disease in 2014 via blood test and upper endoscopy. Before I was diagnosed I went to at least 5 doctors (that I can remember) complaining of symptoms.
When I said that I felt fatigued, I was told to sleep more. When I complained of joint pain, I was told that I was just typing too much. When I complained of mood swings, I was told it was just being a teenager.
Doctor after doctor told me that that I was a hypochondriac.
Celiac disease is not rare--it affects ~1% of the population--so statistically speaking, all the doctors who told me to stop faking it regularly see Celiac patients.
My story is incredibly common; every person with chronic illness I know has a version of the same story: being called a hypochondriac by many doctors before finally getting a diagnosis. (Diagnoses which, like my own Celiac disease diagnosis, are not wonky or controversial; they meet standard diagnostic criteria.)
I don't know think the entirety of that "5%-10%" of the population are actually hypochondriacs.
I'm not entirely sure how to do this, but I think it would benefit society to have Wittgenstein's Tractatus Logico-Philosophicus taught, and probably William James's Pragmatism.
Wittgenstein is a difficult read, Pragmatism is not difficult, but I feel like many people wouldn't understand what is being said.
The goal of this would be to teach how language is the basis for all science, and as a result cannot explain what is realistically happening, but rather a useful estimation.
But right now, the majority of the population believes in scientific realism and have no idea that biology/medicine are systems with rough edges that cannot understand everything.
I imagine the humility for doctors would be a benefit. The general population would be more likely to work towards developing solutions and trying things rather than expecting a simple solution.
But again, I have no idea how to actually do this. It took almost a decade of reading to learn about these concepts, and it took humanity ~2400 years since Plato to figure this out.
A Norwegian team looking into Long Covid ME/CFS formulated a quite good (but still somewhat flawed) questionnaire for quantifying functional disability that Post Exertional Mailaise (PEM) causes. Its called Funcap and there are two forms, 27 and 55 which are the number of questions. There is a publicly available SPA for this https://raffbenato.github.io/funcap55/ which will give you a good idea of the level of debilitation someone scoring 1 is dealing with.
Funcap maps fairly well to the mild,moderate, severe and very severe descriptions that have been historically used and its fairly precise and improvements of 0.5 are very measurable. Its not popular yet but it should be its probably the best functionality questionnaire.
In regards to linguistics there is a real issue with people who have never had a sensation understanding someone else describing it. ME/CFS is 4 symptoms and a few other groupings of them under the Canadian Consensus criteria but a lot of focus is put on fatigue and PEM. But the fatigue is not something someone who doesn't have the disease could understand. Its not tiredness like not sleeping enough, its somewhat more like the worst flu you ever had and made you want to stay in bed (which most people have not experienced) but its still underplaying the muscle weakness and lack of stamina and general feel of unwellness that encompasses this fatigue, its like all the cells in the body have no energy. There is simply no way to express this and have someone understand how debilitating that is and the consequences for breaching capacity, which make ME sufferers worse sometimes permanently. We just don't have the words or really the understanding because while many biological issues have been found nothing has yet been accepted as a biomarker of the condition.
People (even from the same culture, with the same native tongue) use words differently. It is one of the reason for which I am mildly skeptical about all such things as "How happy you are on the scale 1-10?" - no matter what is the sample size (it could be a billion), it depends on one's inner definition of "happy" and on the numbers attached to it.
Words are virtual. At the same, experiences are real. Also, real is their impact of our lives. "A headache" can be anything for from a slight discomfort, to something crushing, putting in a blank stare. It can be of various lengths, various frequencies, impacting us in various ways. Both matter.
> I want practitioners and researchers to help us name things so that they can measure them, and so that those measurements can be accurate reflections of our internal realities.
I think it is one of things where LLMs can shine - by translating one's own notes, ones own recordings of everyday life, into a summary.
This used to be a bottleneck - so people HAD to resort to some questionaries (binary or Likert scale), to make it quantitative. Now we can automatically process actual text. (It was possible before, to some extend, with simpler models like word2vec or Latent Dirichlet Allocation), but with LLMs we can actually get the full context, not only look for keywords, their groupings and associations.
I think words are less the problem so much as evidence. The symptoms of chronic conditions kind of are what they do.
Maybe you could say something like: I planned to complete five items on this list today and only completed one, because I was too fatigued to continue and could not complete another item despite telling myself to do so or attempting to engage in the activity. This creates a goal-outcome gap in language. This is useful but the real problem is it's still open to challenge in terms of intangibles like motivation, work ethic, whether you deliberately set yourself up to fail to make a point etc. even if you have diagnostics to back it up.
But I think this is telling of a deeper truth in those cases: others considering you a burden and looking for excuses to lighten themselves of that burden. At some point there's no convincing someone who selfish in that way to believe something which they perceive to have consequences against their own interests.
We live in these ideologically competitive western societies, and at some point the tension between organisations' perception of their own competitiveness overrides the societal pressure to support people with problems into work.
That being said if someone with a chronic disease has evidence like a diagnosis and that's linked to studies backing up their condition and others are listening to accusations on the basis of unfalsifiable intangibles then at some point you have to consider those without evidence are probably not acting in good faith. This is really relevant when it's an employer, for example, but it comes up in e.g. politics a lot as well where it comes to taxpayer spending etc.
Edit: maybe there is a potential term in there like "supportphobia" to describe actions/speech which is designed purely to free an individual or organisation from the burden of supporting those with legitimate conditions.
Nevertheless I think goal-outcome gaps like that are pretty useful to explain what's going on. Especially if the goal is something simple like "staying awake for a normal period of time" and yet you find yourself falling hard asleep in the middle of the day despite having slept well for well over a week beforehand.
Not just chronic illness, but any viral illness is hard to describe and does not have reliable biomarkers. You wake up feeling lousy. Your family can tell because maybe your voice is deeper than normal, but a medical professional would not be able to tell you are sick. I feel "inflamed", "off", "not well", "less vigorous", you know, "sick".
After skimming this article, it drove me to search for the term “hypochondria” which this article suggests afflicts 5%-10% of the population.
https://www.psychologytoday.com/us/basics/hypochondria
Those afflicted with hypochondria spend 10x more on health care than the average individual, according to this article. May be a relevant driver for health care costs, and thus insurance costs. I’ve heard that every medical student at some time in their education becomes a hypochondriac after learning all the failure modes of the human body.
I was diagnosed with Celiac disease in 2014 via blood test and upper endoscopy. Before I was diagnosed I went to at least 5 doctors (that I can remember) complaining of symptoms.
When I said that I felt fatigued, I was told to sleep more. When I complained of joint pain, I was told that I was just typing too much. When I complained of mood swings, I was told it was just being a teenager.
Doctor after doctor told me that that I was a hypochondriac.
Celiac disease is not rare--it affects ~1% of the population--so statistically speaking, all the doctors who told me to stop faking it regularly see Celiac patients.
My story is incredibly common; every person with chronic illness I know has a version of the same story: being called a hypochondriac by many doctors before finally getting a diagnosis. (Diagnoses which, like my own Celiac disease diagnosis, are not wonky or controversial; they meet standard diagnostic criteria.)
I don't know think the entirety of that "5%-10%" of the population are actually hypochondriacs.
That 5%-10% number is a little close to number of people with rare diseases, per wikipedia:
> European Union has suggested that between 6 and 8% of the European population could be affected by a rare disease sometime in their lives.
Obviously some of rare diseases are quite visible and obvious, but I wonder how many aren't.
As the article notes, hypochondria is not an officially designated term.
Historically a great many diseases that medical research had not understood, have been widely assumed to be imaginary.
For instance: “fakers disease” which you’ll now know by its medical term: “multiple sclerosis”.
Yeah but Faker's Disease was called that because it was first described by John William Faker.
Must be a burden to have a family name that also is a disease, like Alzheimer.
One can only imagine what James Jonathan Multiple Sclerosis must have felt.
There's no hits for this in google or wikipedia.
Neither are there any for "faker's disease", so I'm starting to suspect we both made things up.
I'm not entirely sure how to do this, but I think it would benefit society to have Wittgenstein's Tractatus Logico-Philosophicus taught, and probably William James's Pragmatism.
Wittgenstein is a difficult read, Pragmatism is not difficult, but I feel like many people wouldn't understand what is being said.
The goal of this would be to teach how language is the basis for all science, and as a result cannot explain what is realistically happening, but rather a useful estimation.
But right now, the majority of the population believes in scientific realism and have no idea that biology/medicine are systems with rough edges that cannot understand everything.
I imagine the humility for doctors would be a benefit. The general population would be more likely to work towards developing solutions and trying things rather than expecting a simple solution.
But again, I have no idea how to actually do this. It took almost a decade of reading to learn about these concepts, and it took humanity ~2400 years since Plato to figure this out.