Measuring the severity of ME

Oh I wouldn't present it that way to the patients, just a graded list of things that go from stuff anyone who is conscious can do all the way to extreme exertion.

The stratification only helps to demarcate the population afterward, falling into some severe, moderate, mild classification. This can be determined based on large population samples. It's a bit arbitrary but mental shortcuts are important to use in a clinical setting, otherwise it's probably too demanding.

 

There are quite a few different fatigue-scale questionnaires or research instruments that have been developed over the years.
Why is the SF-36 used so often, and why was is developed, or more relevantly, just how is it used in Britain?

I include here a fibromyalgia impact questionnaire2 (FIQ-2) developed by my old favorite research team at Oregon Health Sciences Center, for your perusal. I think a ME-specific instrument (a reliable and useful research tool) would be useful.

https://www.drpodell.org/FIQR.pdf

 

What about if the list was not just physical, but based around activities of daily living? Responses could be yes independently/ no problems, yes - but it’s hard, no - need help/it’s difficult, no - i can’t do this at all.

So, for example:
Can you-
1. Look after yourself (washing, dressing, eating, moving around)?
2. Shop and cook for yourself?
3. Walk around as you need to?
4. Do housework and clothes washing?
5. Look after other people (children, parents etc)?
6. Work at a job more than 30 hours a week?
7. Work at a job more than 10 hours a week?
8. Socialise/talk with friends?
9. Go to the cinema?
10. Take exercise (ride a bike/ go for a walk/ go to the gym)?

Maybe there is a scale out there used for something else which could work for us....

For me, normal living would mean being able to do all of the above without problems for as long as I am of working age.

 

It is utterly difficult to describe (including "measuring") fatique:

I could work half time but had pain. Another guy is bedbound but has no pain.

When I managed to slowly loose my pain, I couldn´t work anymore, mainly because of cognitive failure, also inducible by moving too much around.

When I could work and had pain, I was mentally most effected (concentration), which was even worse in some sense than pain, as I couldn´t do anything for my own sake.

But now, when I get worse from moving around, I often can do things mentally. Computer is a problem (likely calcium influx from EMF), but otherwise I at least can do things well enough, and for quite long, hours, not minutes.


It´s all rubbish thinking. Researcher must ask the right questions, and "measuring" any problems in a complex disease in different people from different onsets leads to nowhere.

It´s that they simply have no idea how to possibly answer a question like "Why would this or that be?"

 

The problem as far as I am concerned with all of the scales that I have come across is that they depend on a patient giving grades to the amount of difficulty experienced, and that is utterly unreliable and easily manipulated. When I was in hospital one of the nurses asked me what my level of pain was on a scale of 0 to 10. How on earth does that make sense? I've seen someone claim that the pain level was 7 when a bulldog clip was put on their finger.

Equally, cognitive scales (e.g. socialise, talk with friends) as @Daisybell suggests look reassuring but have the same drawback: it all depends on the patient's interpretation.

I was hoping that I could produce a simple, more factual list (well, everything is subjective really), but to be honest, I'm warming more and more to Trish's straightforward classification. I found myself wanting to sit between grades even then, but if we had the rule that if you find yourself between grades, choose the lower one, that would fix that.

The aim really is to have a scale that could reflect distinct improvement, but be less susceptible to external influence. There's no way a scale can reflect our complex lives.

 

Yes, agreed. The only trouble I found with it is that for any one grade, there is unavoidably a quite complex combination of requirements.

My wife would be 10 close on, except that she can often walk quite a bit more than 1 km, albeit at a slow pace. And with our walks the brief stops are mostly not explicitly for rests, but just to stop and look at flowers, butterflies, take photos, whatever. But it's a 'workflow' that facilitates my wife not needing to explicitly stop so often for real rest stops, though we will sometimes do so briefly if a seat is handy, and my wife is really struggling. It's tricky, because as soon as you specify a specific distance it rules out the way that a pwPE might adapt and so 'pace' their way around issues.

And 11 is a No, because would not be able to work, and active leisure activities are definitely out.

 

good idea.
I think it's a really good scale, but for me the distances able to walk seem much further than expected in line with the other abilities at that stage - for example 20 mtrs is a looong way for someone who can only sit up in bed for an hour at a time? Certainly i couldnt walk that far without resting 5 or 10mtrs ok but never 20.

Obviously it will never fit everyone because people's abilities are different but i thought it was worth flagging up to see what others think.

 

On another thread @Kitty suggested a scale with additions of activities with a variety of possible combinations in a given period of time. Can't find it now but I think the idea is excellent.

Edit: Here it is:
https://www.s4me.info/threads/persi...-2020-townsend-et-al.16128/page-2#post-289208

 

Thought this discussion might be relevant for the question how to deal with the problem that the term 'fatigue' has such a variety of meanings and the question whether to ban 'fatigue' from using it to describe ME/CFS at all.

See the discussions e.g. here:

https://www.s4me.info/threads/fatig...e-cfs-and-long-covid-discussion-thread.25379/

https://www.s4me.info/threads/postexertional-malaise-syndrome.25362/

https://www.s4me.info/threads/fatigue-measurement-scales.16307/


I think if 'fatigue' is used it's important to specify the symptoms and I thought in this thread were some good examples.

I also think critique of the Chalder Fatigue Questionnaire needs a wider audience, it should be made clear to every clinician that it's not an adequate instrument to diagnose ME/CFS or measure severity or measure improvement/ deterioration in ME/CFS.

https://www.s4me.info/threads/s4me-...-with-the-chalder-fatigue-questionnaire.2065/

Edited to add links.