Fatigue measurement scales

Snowdrop said:
I don't know anything about LJ's questionnaire's. Someone else might be able to answer this.
If it's the case that he has some useful scales a question might be, do they only get used in US setting. So there might be room to either lobby for his scales if useful in the UK or to create scales with use in the UK specifically in mind.
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Latest discussion here: https://www.s4me.info/threads/the-d...-validation-study-2019-sunnquist-et-al.11289/.

It's a fine questionnaire and much better than any of the others but it's still missing a lot of the weirdness and fluctuation, something that can only come from the input of many patients. It's far too easy to anchor on our own experience so requires a broader approach. The sheer number of symptoms makes it hard to select for those that are relevant.

Typically such questionnaires will focus on the most common symptoms but there is such a wide range that it becomes a kind of situation like "rare diseases may be rare but there are many rare diseases and added up they aren't quite as rare". Patterns of symptoms are also central to the illness and that's hard to reflect without asking for a deluge of data from the patients.
 
Snowdrop said:
It could be decided by those with the ability to actually do the project what they feel is the important bits (with some preliminary input still) and move forward something that fits the needs that were defined.
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As a group which has been so highly stigmatized because of how others have chosen to define us and then attempted to measure their idea of key features, it is essential that patient input is sought in my view.

Even the very well intentioned can cause further problems for us because they don't necessarily understand how easy it is for the simplest of things to be twisted.

Snowdrop said:
I don't think it needs to be overly hashed out.
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I agree it doesn't need to be hashed out here but it would need to be hashed out and patients need to involved and listened to.
 
Trish said:
Isn't that what Leonard Jason has been doing for years with his questionnaires?
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I think his team have probably produced some of the best work so far.

The snag is what are we measuring?

Is it ME, PEM? fatigue as a replacement to Chalder's rubbish questionnaire?

Or probably more appropriately, as @Barry suggests a suite of questionnaires with each patient filling in the ones relevant to them.
 
Invisible Woman said:
What exactly do we measure? Some (like me) object to the use of fatigue but others are happy with it. What we aren't very clear on is what the hell it is.
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My wife often uses the work "tired" which I know many people here detest. But you have to hear the emphasis my wife puts on the word within a sentence, and the emphasis of the sentence itself, and then most would appreciate what she means. It's more colloquial than literal.
 
Barry said:
My wife often uses the work "tired" which I know many people here detest. But you have to hear the emphasis my wife puts on the word within a sentence, and the emphasis of the sentence itself, and then most would appreciate what she means. It's more colloquial than literal.
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Yep. You understand that and she doesn't have to be cautious in her language with you.

With my husband, these days, I don't have to worry so much about the precise word I use. In the early days it was a problem. He's also aware that my words fail me as my function wanes.

However, the words used when having a discussion with others, especially those who don't understand or will wilfully misinterpret, those words matter. They matter a lot.

A clear definition of those words as they apply to an ME patient, would be needed I think.
 
I think it is also too easy to get hung up on word usage. When someone with ME/CFS speaks of being shattered, utterly exhausted, extreme fatigue, desperately tired, in a sense it doesn't matter what their choice of words is when speaking to people who understand, because everyone with ME/CFS knows perfectly well what the person is trying to say when they express those words, even if it's a different word choice to what they would use. Within the world of ME/CFS sufferers, the experience being expressed is pretty universal, even if the descriptive language is not.

But the descriptive language becomes important when trying to convey this illness experience to others, non-sufferers, people who don't understand ME/CFS (especially those who believe they do!), etc.

It's a bit like when I was made redundant in 2008, and was job hunting for getting on a year. One of the obstacles I eventually realised was that different (only slightly different) business sectors had different terminologies and jargon for the same skills, technologies, work practices, etc. And because CVs these days are initially auto-screened by software packages, you could have the right skills and qualifications but be calling them something the auto screening filtered out. Only after some discussion would it be realised I had something of interest they knew by a different description.

So whatever description pwME may use to describe "extreme fatigue", it is highly likely they are describing the same thing, no matter what they call it. We need to be tolerant and understanding of people's different ways of expressing it.

But when expressing to others, the descriptive language becomes more important, and more commonality of language could help.

Being as I'm nearly asleep as I write this, I suspect I may have muddied some waters :rolleyes::).
 
Invisible Woman said:
As a group which has been so highly stigmatized because of how others have chosen to define us and then attempted to measure their idea of key features, it is essential that patient input is sought in my view.

Even the very well intentioned can cause further problems for us because they don't necessarily understand how easy it is for the simplest of things to be twisted.



I agree it doesn't need to be hashed out here but it would need to be hashed out and patients need to involved and listened to.
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I hear what you're saying and agree. I think I was not entirely clear. And I'm not sure I am able to clarify sufficiently well. Wide input but whatever group has the ability to pursue this would ultimately make the choice of what the questionnaire is about (as was pointed out that more than one scale could be useful) And it would need to be tested and verified against a large base with returning to hone the questions etc.

I have no knowledge in any of this so anything that gets done will need to have initial input from those who know how these things are done. Or someone able to get up to speed and help tutor others.

I'm not even certain that addresses the issue you raise.

And here I'm going to cop-out and say while I raised the idea I'm in no way able to move anything forward in any specific detail.

It may be that we're all too busy just trying to get by to manage but I think having something that meets scientific standards much better than the cfs and other such scales could be helpful in any research that happens. Pipe dream?
 
Snowdrop said:
I don't know anything about LJ's questionnaire's. Someone else might be able to answer this.
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rvallee said:
Latest discussion here: https://www.s4me.info/threads/the-d...-validation-study-2019-sunnquist-et-al.11289/.

It's a fine questionnaire and much better than any of the others but it's still missing a lot of the weirdness and fluctuation, something that can only come from the input of many patients.
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More discussion on the same topic and links to some other scales (both PEM and more general ones):
https://www.s4me.info/threads/defining-and-measuring-post-exertional-malaise-a-discussion.15783/
 
I filled in some of Jason's questionnaires and like others I have done I regret answering the way I did. I don't do questionnaires nowadays unless I have read a discussion on the forum about the implications of the questions.

The problem is that we read a question one way but the answer is taken in a way we did not mean at all. As usual it is difficult to think of an example off hand, but think of being asked if you felt tired. Well, yes I do, so I might tick that but then when the results come out they say that the majority said they felt tired so tiredness is now going to be the major criteria as it is a word the patients feels describes them. Oops!

Also I used to get absence seizures when I was a teenager. I would walk away from my friends and find myself in a different place without knowing how I got there. But now that is taken to mean dissociation and indicates FND even though it used to be called a symptom of ME. So my answers may lead to ME being classed as functional and emotional.
 
I don't know whether this is useful, but as it's at least short, I'll add it anyway:

Would we be measuring fatigue, or energy?

(I interpret fatigue as the absence of energy, coupled with pain.)

The Chronic Illness Inclusion Project, which I think has now come to the end of its funding, has been attempting to expand the social model of disability to include energy-limiting chronic illnesses. I am hopeful this will eventually bear fruit, as it can only be helpful to chronically ill people. For this reason, I'm inclined to focus on energy as a term rather than fatigue – but I'm aware that I'm not really capable of thinking clearly enough to tackle the subject properly, and consequently I may just be muddying the waters.
 
Kitty said:
Would we be measuring fatigue, or energy?

(I interpret fatigue as the absence of energy, coupled with pain.)
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I wouldn't see it that way. I see fatigue as a perception, a subjective warning indication. There will be all sorts of potential triggers that can signal this I'm sure, including some that will be false positives. (The latter is where the huge problem occurs of course, because the BPS crew like to believe there are far more false positives then there are in reality).

Energy is a very physical thing, and is indeed pretty much at the heart of physics itself in many ways. Low energy supply will I'm sure (medically unqualified though I am), be a major trigger of the sensation of fatigue. But the two are very different.

I suspect we are on the same wavelength.
 
Barry said:
I see fatigue as a perception, a subjective warning indication.
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I do understand what you mean – it's quite hard to define, but I think I only experience fatigue when I have exhausted my energy.

For instance, I've just been trying to move a heavy trough planter outside on a hot afternoon, and I'm tired as a result. When I've had a break, though, I'll be able to do a bit more. The fatigue won't kick in until there's no possibility of doing any more until I've restored some of the energy via more extensive rest/sleep.

It's not the same as tired, because it's abnormal. Healthy people find it quite hard to exhaust themselves to the point where their muscles can't even support them to stand up. And some days, of course, I'll experience the same level of fatigue without having done anything much at all.

I don't think I associate fatigue with 'You shouldn't do that'; it's 'You can't do that'. The same doesn't necessarily apply to everyone, of course... :nerd:
 
Kitty said:
I do understand what you mean – it's quite hard to define, but I think I only experience fatigue when I have exhausted my energy.

For instance, I've just been trying to move a heavy trough planter outside on a hot afternoon, and I'm tired as a result. When I've had a break, though, I'll be able to do a bit more. The fatigue won't kick in until there's no possibility of doing any more until I've restored some of the energy via more extensive rest/sleep.

It's not the same as tired, because it's abnormal. Healthy people find it quite hard to exhaust themselves to the point where their muscles can't even support them to stand up. And some days, of course, I'll experience the same level of fatigue without having done anything much at all.

I don't think I associate fatigue with 'You shouldn't do that'; it's 'You can't do that'. The same doesn't necessarily apply to everyone, of course... :nerd:
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Yes, I was just distinguishing between the sensation of fatigue, versus the thing that provokes it - no useful energy available. The same as the sensation of pain is distinct from whatever it is that causes the pain.

But I fully agree that the sense of fatigue you speak of is when there is nothing left in the tank, no matter how much you might want to do stuff, it is physically impossible.

Bear in mind I don't have ME/CFS, my wife does, but nonetheless a very involved observer.
 
Kitty said:
I don't know whether this is useful, but as it's at least short, I'll add it anyway:

Would we be measuring fatigue, or energy?

(I interpret fatigue as the absence of energy, coupled with pain.)

The Chronic Illness Inclusion Project, which I think has now come to the end of its funding, has been attempting to expand the social model of disability to include energy-limiting chronic illnesses. I am hopeful this will eventually bear fruit, as it can only be helpful to chronically ill people. For this reason, I'm inclined to focus on energy as a term rather than fatigue – but I'm aware that I'm not really capable of thinking clearly enough to tackle the subject properly, and consequently I may just be muddying the waters.
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Lethargy is probably the right word to use, but just like fatigue the proper meaning of a word does not matter in psychosocial ideology, its misrepresentation will be weaponized.

It's impossible to progress against internal sabotage, with people willing and able to not mean what they say and not say what they mean in actual published literature. I'm not sure changing words would matter much, it would be quickly distorted. The process of science assumes that people never act in bad faith. Very bad assumptions make for very silly donkey science.

This is a fundamental problem that medicine and clinical psychology have to fix but do not have the ability or will to do so. Nothing will change until patient engagement becomes a real thing and definitions are clarified based on actual reality. Even if a better word were to become used, its meaning would quickly devolve into multiple meanings. The issue of bad faith actors and a system that enables their worst impulses supersede all other factors.
 
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