Measuring the severity of ME

[rvallee]

I like your post, but on this one aspect we disagree. If you tier the activities, you automatically inform the patient that they are tiered and change the way that they look at them. I'd not even group the walking questions together in the real test.

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.

 

[shak8]

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

 

[Daisybell]

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.

 

[spinoza577]

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?"

 

[Graham]

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

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.

 

[Barry]

I'm warming more and more to Trish's straightforward classification.

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.

 

[Trish]

A different approach:

You could set up hypothetic scenarios of a full day's activity, and simply ask people to tick the one that best describes their level of physical functioning today.

1. Bedbound. Need 24 hour assistance with everything including feeding, turning over in bed, and toileting.

2. Feed yourself 3 meals in the day that are brought to you in bed, able to turn over in bed and get into a wheelchair with assistance and cope with carers helping you to do necessary toileting and washing.

3. With the help of aids such as a wheelchair, deal with your own feeding and toileting.

4. As above and sit up in bed for up to 10 minutes at a time up to 3 times in the day.

5. As above and walk or self propel a wheelchair on the level inside the house and sit for up to half an hour at a time up to 3 times in the day.

6. As above, and sitting basin wash or shower, and dress without assistance. Sit up in bed or on a sofa for up to an hour at a time up to 3 times in a day. Walk up to 20 metres at a time in the house up to 5 times in a day.

7. Housebound, able to manage all self care and simple meal preparation, but need assistance with heavier tasks like hoovering. Able to go up and down one flight of stairs once or twice a day. Need a wheelchair for occasional outings unless driven door to door. Need to rest for most of the day.

8. Able to do the above and go for a short walk up to 100 metres or do a little light gardening, housework or moderately active hobby once or twice a day.

9. Most days able to go for a short walk up to 300 metres and do a little light shopping, or alternatively do a little housework or gardening, but not more than one of these in a day.

10. Able to do your own housework and go on a short shopping trip or walk up to 1 km or some combination of these but not well enough to reliably hold down a regular job, even part time, unless sedentary or done from home.

11. Able to self care, care for a home, and work part time in a fairly sedentary job, but not able to do active leisure activities and need to spend most of the remaing time resting or doing sedentary activities such as wathching TV.

12. Able to work full time in a moderate level activity job, and care for yourself and your home and family, but unable to do vigorous sports and need to be sedentary in down times.

13. Able to do the same as healthy people my age can do without restrictions.

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.

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

Given that my list was the result of about 10 minutes thought, I wouldn't bother with the details of whether the descriptors are right, it's just a sample of the sort of thing I mean. It would need to be refined and tested with a large sample of patients across the severity range.

As to the question of what if you fall between 2 categories, I think such a scale could have extra stages for between 1 and 2, between 2 and 3 etc. and make it a longer scale that way. Alternatively, as Graham suggests, if you fall between 2, pick the lower one, since that's the one that you fit more reliably at the moment.

I'm going to set up a members poll out of curiosity using my list and see how people respond.

 

[JemPD]

I'm going to set up a members poll out of curiosity using my list and see how people respond.

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.

 

[Trish]

I'm going to set up a members poll out of curiosity using my list and see how people respond.

I've posted it here:
https://www.s4me.info/threads/trishs-severity-scale-how-do-you-score.16605/

 

[Trish]

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.

I'll respond to this on my thread. I don't want to derail this thread.

 

[MSEsperanza]

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

 

[MSEsperanza]

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.