Measuring the severity of ME

[Simbindi]

but the major emphasis is on the heavy emphasis of "without any undue consequence".

That concept would need to be refined as it is still too subjective and can mean different things to different people. Any scale should be able to be answered by those with cognitive impairments and neurological differences (such as those with autism who require things to be stated in clear unambiguous terms).

 

[Simbindi]

If I could walk 100 yards at a reasonable pace, but that was it for the day, then clearly it had a major consequence for me.

You have to remember what is 'clear' to you won't necessarily be clear to another person. Which is why I have suggested you use tems that have an established meaning in law (for example the ESA and PIP criteria and the term 'reliably'). At least then a professional would have no excuse or room to manipulate the respondent.

 

[Trish]

I think you need to clarify the purpose of the scale.

It sounds like you are looking to use it to demonstrate how much less a pwME can do than a healthy person, a bit like the disability benefit application forms.

I was thinking more of whether it can be used in research and to inform the patient and their doctor, in which case the aim is more to compare the patient's physical capacity from day to day and month to month to gauge fluctuations, help with pacing or assess effectiveness of treatment.

In other words is it aimed at comparing the patient with themself over time, or at comparing patients with each other and with control groups at one snapshot instance? Or both?

 

[Simbindi]

Novelty is a factor for me, both cognitively and physically.

I can do an on line grocery order relatively straight forwardly, with an account I had help setting up, but really struggle if there is a several month gap since I last order or doing an order on line from a new company. Not only is a novel activity harder it is more tiring.

I also have more issues walking somewhere unfamiliar, I definitely will need a stick, have to walk slower and concentrate more. I am not certain if this is a cognitive or a motor issue.

Yes, it gets complex, doesn't it! I think that is why the ESA and PIP refer to being able to do routine activities and follow known routes first then ask about whether you can do an unfamiliar activity or follow an unfamiliar route. This is very significant. I was able to judge how much my cognition had deteriorated when I realised I was getting lost following routes I had driven for years, not even being able to recognise the once familiar roads and landmarks (I have since stopped driving).

 

[Graham]

That concept would need to be refined as it is still too subjective and can mean different things to different people. Any scale should be able to be answered by those with cognitive impairments and neurological differences (such as those with autism who require things to be stated in clear unambiguous terms).

So make me a suggestion, and feel free to change the list. I'm a happypotamus when it comes to criticism. I've got a thick hide, and remain cheerful!

Back in 2012 I carried out a big survey on the Chalder scale. Using the severity grades for the 11 questions (graded 0 to 3), folk who rated themselves as severe scored 22 to 33, moderates scored 12 to 33, and mild from 15 to 29. How much of that variation and overlap is due to the Chalder scale and how much due to the mild/moderate/severe descriptions is up for discussion, but the results of the sf-36 poll amongst members show more consistency.

 

[Simbindi]

So make me a suggestion, and feel free to change the list. I'm a happypotamus when it comes to criticism. I've got a thick hide, and remain cheerful!

I suggested the PIP 'reliability' criteria, because this is well defined after being put together by a large range of disability groups specifically to capture functioning in fluctuating conditions, including M.E.. So people in the UK are familiar with it (and it has been well tested through case law). I am not sure about how PWME in other countries would make sense of it though.

 

[Graham]

I think you need to clarify the purpose of the scale.

It sounds like you are looking to use it to demonstrate how much less a pwME can do than a healthy person, a bit like the disability benefit application forms.

I was thinking more of whether it can be used in research and to inform the patient and their doctor, in which case the aim is more to compare the patient's physical capacity from day to day and month to month to gauge fluctuations, help with pacing or assess effectiveness of treatment.

In other words is it aimed at comparing the patient with themself over time, or at comparing patients with each other and with control groups at one snapshot instance? Or both?

I was thinking of it being a useful, broad measure for comparing a patient's progress over time, or for comparing patients with each other. A scale that goes from 0 to 20 cannot be a finely tuned gauge. The sf-36 really only goes from 0 to 20, but the scores are multiplied by 5 to make it look better.

Certainly not for benefits etc. because that is a measure of the ability to hold down a job, live a life – those are whole day measures, not single activity ones. For us, major progress is the ability to manage an extra activity that was once beyond reach. I know that small improvements mean a lot to us, but it would be really difficult to measure this so finely.

I know that the reality of us producing anything that one day would be taken up is very remote, but let's face it, we do have the experience of knowing what the condition is like, and are we just going to sit back and hope some researcher will understand?

 

[Simbindi]

I was thinking more of whether it can be used in research and to inform the patient and their doctor, in which case the aim is more to compare the patient's physical capacity from day to day and month to month to gauge fluctuations, help with pacing or assess effectiveness of treatment.

I am not sure how useful this would be for research purposes as it becomes very individualised. However, this seems like a good idea, to create a list of questions that would make a standardised 'activity diary' template for PWME (from mild to very severe). I can see that would be extremely useful for helping GPs or other specialists to monitor their patients with M.E. and to add to an individual's medical records.

Edit: I meant an activity diary where you can just complete each day by ticking boxes, rather than writing things in.

 

[Graham]

I suggested the PIP 'reliability' criteria

What exact phrasing then would you suggest at the start of the questionnaire?

as it becomes very individualised.

Aren't the scales used at the moment the same? Even biomedical studies are using the sf-36 and Chalder, amongst others.

 

[Simbindi]

Aren't the scales used at the moment the same? Even biomedical studies are using the sf-36 and Chalder, amongst others.

I meant a scale that is intended to be filled out every day to see daily and weekly fluctuations and help with pacing, as Trish had implied, would be too individualised for general research purposes.

 

[Graham]

I meant a scale that is filled out every day to see daily and weekly fluctuations and help with pacing, as Trish had implied, would be too individualised.

Oh no, it couldn't be that finely scaled. It would only go from 0 to 20, and a chunk of that would be "healthy". I think Trish was talking longer term, in the sense of whether pacing does bring about a slow, distinct improvement. Certainly my score 20 years ago, 10 years ago etc. would be different, and my score while I struggled on working in comparison with my score a year after getting ill-health retirement would have been very much worse. We are only talking of something a bit more finely tuned than mild/moderate/severe.

 

[Simbindi]

What exact phrasing then would you suggest at the start of the questionnaire?

I'll have to bow out of the conversation for a while as I was reading this thread while having a break from reading PIP case law, to help fill out a friend's PIP health questionnaire! Seeing how hard it is for even judges to understand a person's physical and mental functional limitations made me want to add my bit on this thread. It won't be easy to create a scoring system that accurately portrays a PWME's functional level, but I think it is something worthwhile attempting.

Edit: So I will come back to the conversation when I have spare capacity.

 

[Louie41]

What kind of shopping are you envisioning? There's so much difference in weight between a bag of groceries including a lot of cans and a bag with clothing. Does "shopping" in the UK mean only grocery shopping?

 

[Ravn]

I may be repeating some points already made. Started drafting this answer offline and then the power went off for a loooong 9 hours - and a lot of discussion seems to have happened in that time.

So I have been playing around with a set of tasks where you only have to tick all of those that you can manage "normally": i.e. without any unusual tiredness, pain, or delayed payback.

I'm pleased you put that. It needs to be spelled out very clearly for those not familiar with PEM especially. It's a dimension the existing questionnaires miss. For example the SF-36 asks how limited (a lot, a little, not at all) you are with respect to bending, kneeling or stooping. Well, for me once is no problem (=not at all limited). Several times requires strategically placed furniture (=a little limited) and leads to PEM (=limited a little or a lot?).

This test applies to today: not to a good day, or a bad day.

Alternatively it could apply to an average day? Unless you're tracking daily fluctuations.

Would there be benefit in putting in a few cognitive questions or is this intended to be purely physical?

That's a good point. Maybe questions about social functioning, too? Though I guess they would best be designed as subscales, like the sf-36 has several subscales, the physical function being one of them.

Work at something steady and physical (eg mowing the lawn, decorating, cleaning)

I think there's too big a gap between mowing the lawn and cleaning. Cleaning could just involve wiping down the kitchen bench, which is in a different league to mowing the lawn, even if only for a few minutes. Guess you could say vigorous housework or vacuuming or something specific like that instead?

I'm wondering about breaking your list up into 'themes' because some of the items relate more directly to physical endurance and others more to function. Although there isn't a clear cut line between the two. Sections of your list are already organised like that anyway. A more polished version could have the same number of items for each theme, with each item corresponding to a severity level and maybe with some more options for the severe end, but for now here is just a rough illustration of what I mean:

Eat a full meal in bed or recliner.
Eat a full meal at table once/day.
Prepare a simple meal.
Cook a full dinner.


Sit upright in bed for ten minutes
Sit upright in a chair for half-an-hour
Sit upright in a chair for longer periods.


Walk 100 yards
Walk several hundred yards.
Walk a mile.
Run 100 yards.
Jog one circuit of a running track.


Climb a few steps.
Climb a flight of steps.
Climb several flights of steps.


Lift a bag of shopping on to a table.
Lift and carry three or four bags of shopping a short distance.
Drive to shop, lift and carry three or four bags of shopping a short distance, and unpack in one go.


Wash yourself
Have a seated shower (at least x times/week)
Have a full shower (at least x times/week)
Have breakfast, shower and get dressed in one go


Work at something steady and physical (eg mowing the lawn, decorating, vacuuming)
for ten minutes
for half-an-hour
for two hours or more

 

[yME]

Perhaps we should consider the final target of Graham’s excellent work?

For me I think DWP / PIP. For others it could be GPs or specialists already knowledgable / researchers. Each group would “see” the responses in a very different light unfortunately.

For DWP the criteria of reliably, repetitively and timely (rrt) become paramount considerations as does the order of activities on Grahams questionnaire.

I took the PIP questions in the order which they were asked, applied rrt, then looked back a few days of applying such a loading to my body when filling in the form. As such I obtained a very different response to that I would have given to each PIP question in isolation or on Graham’s one day proposal.

From experience I agree with Simbindi “judges do not understand” rrt criteria let alone the DWP regarding functional limitation. Foolishly perhaps I attempted a mathematical illustration of applying the rrt to the walking criteria over a two day period. The judge and doctor could not interpret the most simplistic graph or data. So absolute basic final presentation seems required for this particular group aim for a 11 year old, which would be inappropriate for the more science minded audience.

It is very easy for this forum to over estimate the abilities of the adult general public to comprehend any presentation math or otherwise at least in the uk. -statement prompted by a revelation from my teaching daughter.

 

[Jonathan Edwards]

I am wondering how you see the statistical analysis implications of the score system Graham?
I guess that since going up from 5 to 7 is not equal to 7 to 9 you abolish any reference to means or parametric analysis? I would like to see data on how many people went up or down one, two or three points and maybe even indicating the starting and ending points in some sort of graphic display. I guess you could then apply something like a chi square analysis if you wanted to get statistically significant difference from a control population? There might be a need to bunch together various different step-histories to get enough in each group but I guess that would be tractable?

 

[Barry]

@Graham I hope my earlier comment did not seem overly negative, because I think what you are aiming for is extremely good. I especially like the way you have switched the graph axes, the dependent/independent variables; instead of choosing activities and then answering how difficult they are, you have turned it around - stated the level of difficulty (normality) and then asking what activities fit with that. I sense there could be some mileage in that, though can't put my finger on why.

The crunch problem is the symptom variability, which is itself a "layered symptom" of ME/CFS. On the one hand it would be extremely helpful if this could be captured, but in reality would be really complex on a one-shot questionnaire.

As a thought experiment, I can imagine having a "magic monitor" that captures the whole gamut of a pwME's symptoms across a period of time, which data could then be plugged into some analytical tool. Which then makes me wonder whether the fundamental problem is trying to make an assessment based on a single questionnaire response. Maybe it needs a series of questionnaires, effectively forming a diary over a week say. It would make the analysis more complex of course, but that's ME/CFS of course.

 

[chrisb]

Who is the more severely ill, someone who is bed bound for three days at a time, but then may have a couple of weeks of mild symptoms, or someone who is never bed-bound but can never walk 100 yards?

 

[Barry]

Who is the more severely ill, someone who is bed bound for three days at a time, but then may have a couple of weeks of mild symptoms, or someone who is never bed-bound but can never walk 100 yards?

Yes, maybe measuring 'severity' is the wrong thing to presume to be measuring. Or if it is still the right thing, then it could pretty complicated.

I suspect it might be wrong to try and classify into arbitrarily bounded regions such as mild, moderate, ... severe, very severe, etc. Instead place onto a continuum, so avoiding people falling just one side or other of an essentially artificial boundary. These sort of boundaries are loaded with issues for patients anyway.

 

[Andy]

My tuppence ha'penny.

I don't know about anybody else but distances don't really mean that much to me.

Walk 100 yards
Walk several hundred yards.
Walk a mile.
Run 100 yards.

I would struggle to give an honest answer to these questions due to that lack of meaning.

Jog one circuit of a running track.

This one would be somewhat easier as I can picture a running track but do I have a realisitic grasp of how far that actually is? I'm not sure I do.

I think I would have a better grasp of time i.e can you walk for 30 mins, run for 5 mins, jog for 15 mins etc