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.
I must give some background so you don't think I'm being factious or silly by what I'm about to explain.
Next week it will be twelve years since my wife killed herself due to Chronic Pain. Willing or not thrusting me into being an advocate for those with Chronic Pain. Most specifically advocating for those with Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks and those poisoned by Fluoroquinolone antibiotics such as Levaquin, Cipro etc.
See our documentary Pain Warriors about the whole saga of my late wife. It is free to watch many places. I get no remuneration of any kind from Pain Warriors.
As someone with Lupus "The Spoon Theory" was created by Ms. Christine Miserandino.
Anyone that spends time in Social Media related to chronic health issues is going to come across someone talking about 'Spoons'. Yes, the utensil that you eat with.
A normal health person has an unlimited number of spoons per day. Someone with a chronic condition may only have five or ten if they are lucky.
Each 'Spoon' represents a task of daily life. Say just getting out of bed, taking a shower or eating a meal, each being one spoon.
When you run out of spoons for the day your day is over, or you start paying by borrowing spoons from tomorrow, which makes tomorrow a worse day than today.
So the linguistic words being looked for are already being measured by the community itself in a scale of Spoons. As silly as it might sound.
Ms. Miserandino explains how this all came about here:
Something I need to add, because I mentioned Lupus, is that food sensitivities to Nightshade plants, common in our diets, can mimic the systems of Lupus and Rheumatoid Arthritis. If you or a loved one has those, eliminate the Nightshade family from your diet for a while and see if there is any improvement.
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.
The problem goes quite a bit deeper than that in medicine. Most descriptions of diseases have been reduced to a primary set of symptoms and presentations. Just this week we had a study showing MS patients start turning up in doctors offices 15 years before the accepted MS symptom set appears and its taken this long to notice. Worse is the set of symptoms that are part of the disease is badly truncated.
This happens in every single disease, ME/CFS is 280 symptoms yet its defined by 4 despite the fact that only seems to match about 90% of the patients but they have other combinations. We are dealing with both the imprecise nature of language and a lack of common experience with which to convey understanding but also a medical system that has drastically simplified diseases to the point where its descriptions and diagnostics are incomplete. Its going to take a very long time to correct it all assuming we can get medicine to once again follow the scientific findings, which remains a big if at this point.
I moderated a panel of some doctors about chronic pain. One of the big things that came out of that, for me, was how they describes how the relationship with pain changes when it becomes chronic.
Most times if you experience pain, you want it gone, either with rest, medication or whatever.
When you are dealing with chronic pain, the relationship changes to something described as spousal. You have to negotiate your life around the pain.
It's hard to describe pain. For me an injection is a 1. But some people have full on panic attacks if they even see a needle.
A friend was at the doctor's office and described their pain as a 4, but the doctor noted they were sweating in a cold office, and reclassified it as at least a 7.
I've had post surgical pain so bad that it pushed my spirit slightly out of my body, is a very odd feeling, which I calibrated to my new 10, which may have led me to describe my gallstones as too low.
A heart attack is often described as the worst pain ever but many women ignore that symptom because giving birth, kidney stones and their periods were worse pain.
Part of measuring pain is what you can't do. Sometimes you do less, sometimes you can't do anything at all, but it would be nice to be believed.
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.
Pain scales of 1-10 are a classic example especially the way clincians interpret them. People have wildly different experiences of pain and their 10 is another persons 4. Yet the clinical guidance is usually only treat above a 6 and if the patient isn't scream and wreathing around its not an 8 or more. So if your calm and in control the only acceptable answer is 6 or 7. The clinical interpretation ignores the scoping and they can provide no levelling understanding of pain its not related to certain events.
In my experience if they see someone struggling to move around and follow instructions in the hospital then they will just pump some morphine in so the patient can comply and they can quickly get on with things but its not driven by the level of pain the person is actually in when left alone in their hospital bed or at home.
Article is a long, personal story conveying the human cost and context of a simple-to-understand problem. If you have experienced this yourself - and most have to some degree - then all the description is unnecessary. Which seems appropriate - how do you convey an internal personal experience - maybe lots and lots of talking with metaphors and emotions?
The health-provider side has the problem that some people are faking it, some are seeking attention or drugs without a condition, and some are needlessly suffering but won’t say so. Also, they don’t have the time.
This is a wicked problem for a system to have - there are malicious actors and incompetents on both sides. The current systems of half-century-old 1-10 scores is frustrating and simplistic.
TFA is not saying the solution is for all patients to get an English degree - I think. The worksheet they show as an improvement is dramatically more complex, hard to read, and undoubtedly more accurate than the old 1-10. That’s not a clear ‘win’.
Also, why have we accepted these simplistic tools for so long? Maybe there is little to be gained by improving them - or maybe the incentives are misaligned.
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.
My wife with Long Covid for 3 and a half years has the same issue and doctors just don't want to be bothered by her. For example spirometry test showed that her lung capacity is fine but the test itself left her exhausted for one week.
The pulmonologist analysing the results didn't even want to hear about her idea to do 2 tests in 2 sequential days. It was going to be harming for her but she was willing to do it just to have some evidence of what happens to her next day after an "effort".
She also asked for help to understand why polluting or pollen can trigger her fever and even coughing blood. Doctor just said she doesn't know and there is not test he can do.
It's so discouraging the lack of curiosity, eagerness to help and to try to learn new things 99% of doctors show.
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 was on MS-4 Treatment for Multiple Sclerosis from Uine Health Centre for 6 months. The treatment relieved symptoms significantly, even better than the medications I was given. Reach them at uinehealthcentre .com
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".
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.
I must give some background so you don't think I'm being factious or silly by what I'm about to explain.
Next week it will be twelve years since my wife killed herself due to Chronic Pain. Willing or not thrusting me into being an advocate for those with Chronic Pain. Most specifically advocating for those with Intracranial Hypotension due to Cerebrospinal Fluid (CSF) Leaks and those poisoned by Fluoroquinolone antibiotics such as Levaquin, Cipro etc.
See our documentary Pain Warriors about the whole saga of my late wife. It is free to watch many places. I get no remuneration of any kind from Pain Warriors.
As someone with Lupus "The Spoon Theory" was created by Ms. Christine Miserandino.
Anyone that spends time in Social Media related to chronic health issues is going to come across someone talking about 'Spoons'. Yes, the utensil that you eat with.
A normal health person has an unlimited number of spoons per day. Someone with a chronic condition may only have five or ten if they are lucky.
Each 'Spoon' represents a task of daily life. Say just getting out of bed, taking a shower or eating a meal, each being one spoon.
When you run out of spoons for the day your day is over, or you start paying by borrowing spoons from tomorrow, which makes tomorrow a worse day than today.
So the linguistic words being looked for are already being measured by the community itself in a scale of Spoons. As silly as it might sound.
Ms. Miserandino explains how this all came about here:
https://www.butyoudontlooksick.com/articles/written-by-chris...
Something I need to add, because I mentioned Lupus, is that food sensitivities to Nightshade plants, common in our diets, can mimic the systems of Lupus and Rheumatoid Arthritis. If you or a loved one has those, eliminate the Nightshade family from your diet for a while and see if there is any improvement.
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.
The problem goes quite a bit deeper than that in medicine. Most descriptions of diseases have been reduced to a primary set of symptoms and presentations. Just this week we had a study showing MS patients start turning up in doctors offices 15 years before the accepted MS symptom set appears and its taken this long to notice. Worse is the set of symptoms that are part of the disease is badly truncated.
This happens in every single disease, ME/CFS is 280 symptoms yet its defined by 4 despite the fact that only seems to match about 90% of the patients but they have other combinations. We are dealing with both the imprecise nature of language and a lack of common experience with which to convey understanding but also a medical system that has drastically simplified diseases to the point where its descriptions and diagnostics are incomplete. Its going to take a very long time to correct it all assuming we can get medicine to once again follow the scientific findings, which remains a big if at this point.
I moderated a panel of some doctors about chronic pain. One of the big things that came out of that, for me, was how they describes how the relationship with pain changes when it becomes chronic.
Most times if you experience pain, you want it gone, either with rest, medication or whatever.
When you are dealing with chronic pain, the relationship changes to something described as spousal. You have to negotiate your life around the pain.
It's hard to describe pain. For me an injection is a 1. But some people have full on panic attacks if they even see a needle.
A friend was at the doctor's office and described their pain as a 4, but the doctor noted they were sweating in a cold office, and reclassified it as at least a 7.
I've had post surgical pain so bad that it pushed my spirit slightly out of my body, is a very odd feeling, which I calibrated to my new 10, which may have led me to describe my gallstones as too low.
A heart attack is often described as the worst pain ever but many women ignore that symptom because giving birth, kidney stones and their periods were worse pain.
Part of measuring pain is what you can't do. Sometimes you do less, sometimes you can't do anything at all, but it would be nice to be believed.
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.
Pain scales of 1-10 are a classic example especially the way clincians interpret them. People have wildly different experiences of pain and their 10 is another persons 4. Yet the clinical guidance is usually only treat above a 6 and if the patient isn't scream and wreathing around its not an 8 or more. So if your calm and in control the only acceptable answer is 6 or 7. The clinical interpretation ignores the scoping and they can provide no levelling understanding of pain its not related to certain events.
In my experience if they see someone struggling to move around and follow instructions in the hospital then they will just pump some morphine in so the patient can comply and they can quickly get on with things but its not driven by the level of pain the person is actually in when left alone in their hospital bed or at home.
Article is a long, personal story conveying the human cost and context of a simple-to-understand problem. If you have experienced this yourself - and most have to some degree - then all the description is unnecessary. Which seems appropriate - how do you convey an internal personal experience - maybe lots and lots of talking with metaphors and emotions?
The health-provider side has the problem that some people are faking it, some are seeking attention or drugs without a condition, and some are needlessly suffering but won’t say so. Also, they don’t have the time.
This is a wicked problem for a system to have - there are malicious actors and incompetents on both sides. The current systems of half-century-old 1-10 scores is frustrating and simplistic.
TFA is not saying the solution is for all patients to get an English degree - I think. The worksheet they show as an improvement is dramatically more complex, hard to read, and undoubtedly more accurate than the old 1-10. That’s not a clear ‘win’.
Also, why have we accepted these simplistic tools for so long? Maybe there is little to be gained by improving them - or maybe the incentives are misaligned.
It’s a good problem to work on
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.
My wife with Long Covid for 3 and a half years has the same issue and doctors just don't want to be bothered by her. For example spirometry test showed that her lung capacity is fine but the test itself left her exhausted for one week.
The pulmonologist analysing the results didn't even want to hear about her idea to do 2 tests in 2 sequential days. It was going to be harming for her but she was willing to do it just to have some evidence of what happens to her next day after an "effort".
She also asked for help to understand why polluting or pollen can trigger her fever and even coughing blood. Doctor just said she doesn't know and there is not test he can do.
It's so discouraging the lack of curiosity, eagerness to help and to try to learn new things 99% of doctors show.
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.
What there your symptoms?
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 was on MS-4 Treatment for Multiple Sclerosis from Uine Health Centre for 6 months. The treatment relieved symptoms significantly, even better than the medications I was given. Reach them at uinehealthcentre .com
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".