Fatigue scales - finding or creating a valid questionnaire for fatigue in ME/CFS

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Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder
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I have no idea how many people may come to this thread that are new to the bPs way of doing research so I thought I'd just put a link to the chalder fatigue scale for perusal if anyone's interested:

http://www.goodmedicine.org.uk/files/assessment, chalder fatigue scale.pdf

This scale is discussed here:

https://www.s4me.info/threads/explo...ic-fatigue-syndrome-1998-morriss-et-al.11065/

And these links and further info on various scales can be found here:

https://www.s4me.info/threads/questionnaires-and-scales-used-in-me-or-cfs-research.879/

In our Science Library.

Also, just want to ask all and sundry if you think it would be feasible for us to attempt to create a viable scale. The question first would be what are we measuring since we all know that ME is not just fatigue.

I realise it may be too big a project. But just put it out there.

 

I've been wanting to do that for a long time but this is simply impossible without help from healthy scientific allies. I have no doubt we could create a tool that is massively superior to anything that already exists but it's a big project that needs institutional support and significant experience in clinical psychology. Maybe there's another more fitting field of expertise but I don't know what that would be.

 

I think it's a wonderful idea but a big undertaking.

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.

So first I think you would have to define it, or as many different versions of it that we can identify. Then work out how to differentiate between them.

Then who has what because some may experience multiple types.

And so on.

It's definitely a worthwhile project if we could get someone interested.

 

Excellent proposition I think, but reckon at such an early stage should not be presumed to be a single scale. Instrument rather than scale, especially given it's not precisely known what variables need measuring, how they might interrelate, etc. First thing would be to try and identify what things need measuring, without initially getting sidetracked by how. A top-down approach.

 

This of course is all true but I don't think it needs to be overly hashed out. 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.

That means there could be room for something else still and it would be for a group of people who feel that there is something useful in sussing out other details. The only qualifier being that something robust to the criteria is produced that can be Independently validated by researchers using it.

I wonder (not having done anything like this) is it necessary to provide guidance with regards to how the measures should be interpreted?

 

Yes, agree. I answered IW before seeing your post following. There is room for more than one measure.

 

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.

 

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.

 

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.

 

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.

 

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.

 

Not sure I'd progressed as far as identifying that to be what I was saying .

 

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.

 

Sorry, I misunderstood.

 

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 .

 

No, I just meant that when starting out on any project I often begin with an open slate and only some way along the road do things start to gel. You may very well be right that is what I meant, but not sure myself yet!

 

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?

 

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/