Measuring the severity of ME

[Graham]

I've been studying the sf-36 physical functioning questionnaire and the Chalder fatigue scale for some time now, and am convinced that they are too susceptible to outside influences. A question like "Walking several hundred yards – are you limited a lot, limited a little or not limited at all?" doesn't really define the difference between the grades. I could imagine, when I went down with ME and found it painful to walk a few hundred yards, I would tick "limited a lot". But then, after a dozen sessions with a therapist telling me that I was too focused on myself, that it wasn't unusual as you get older to ache more, and that lots of people can hardly walk from the bedroom to bathroom, I might have been persuaded to change the severity to "limited a little".

I also recognise that people with ME feel a need to emphasise just how bad things are, so these gradings appeal to them. But in reality, we all struggle, and the differences between us are not so important as the massive chasm between us and healthy folk.

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 wondering whether we could construct a list of, say, 20 items that would separate the mild/moderate/severe grades of ME. This test applies to today: not to a good day, or a bad day.

From a statistician's point of view, asking people to answer questions about themselves is unreliable enough as it is: asking them to think back a week or more is far, far worse.

It is only intended to give a ranking: numeric scores don't actually mean anything, in the sense that 10 out of 20 isn't half of anything, scores of 4.5 cannot exist, and the gap from 3 to 5 isn't two of anything.

If it were to work as a ranking, then I would expect most people who score, say 5, would have ticked the same boxes.

Feed yourself
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.
Wash yourself
Have a full shower.
Have breakfast, shower and get dressed in one go
Work at something steady and physical (eg mowing the lawn, decorating, cleaning)

for ten minutes
for half-an-hour
for two hours or more
​

Thoughts?

 

[Daisybell]

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

Reading a book/working at a task on the computer/having a conversation for 10 mins/30 mins/one hour - these are all things I struggle more with now.

On the purely physical questions, my answers would leave me open to people suggesting i am just unfit!

 

[Tia]

I like your list, I think it would give an accurate insight into my level of functioning.

 

[Jonathan Edwards]

it looks a good system and I like the mathematical basis (somewhat Leibnizian, a non-quantitative series).
The idea of doing normally is also nice - if, as I understand, it means 'without using up spoons' or genuinely no cost.
I wondered if there were too many lengths of walking but for me the answer is quite clear. 100 yards or several hundred yards is no spoons. A mile might be a spoon so for me that is no.

 

[NelliePledge]

Shower - I think you could specify full shower standing up or sitting down

 

[rvallee]

I had a similar concept in mind a while back. I think that concepts of sustainability and gradability are important. Simply put: sustainability is being able to continue doing a particular activity. A healthy person can work 8h days of desk work almost indefinitely, for years on end. Someone with mild CFS may be able to to this once, maybe a few times, but it will eventually always eat into other activities.

As for gradability, I like the idea of a scoring system whose cutoff is itself relevant. So like Graham did, going from very light activities that anyone healthy could sustain indefinitely, all the way to strenuous activities that can only be maintained for a few hours, maybe even seconds if we are going with things like full sprints. Starting from trivial activities that require no effort, all the way to the most demanding ones, the cutoff point itself is important, in addition to multiple dimensions of the various activities.

Very foggy right now but I'll just put some of those thoughts:


Basically choose a set of common activities, rate how much you could do before vs how much you could do now and how much you would consider acceptable to self-manage.

Steps:

1. Define a group of common activities
2. Find from population estimates the amount of hours you could sustain each activity at an effortless pace just before getting sick and establish a pertinent scale based on patient experience
   

Bonus point that it will highlight the enormous gap. I personally have lost about 95% capacity. Most people, including medical professionals, would assume 10-15% at most. That’s enormous.

Tier the activities from light to heavy. From enjoying a day at the beach to high-intensity training. It should go from trivial things that anyone who isn’t sick, say from a flu or food poisoning, is able to do without any effort all the way to activities that require significant effort. This creates a clear cut-off point past which ME patients cannot do.

3 tiers: light, moderate, high. All tiers should be sustainable by a healthy person should be able to sustain for:

• Light: 8h without burden and 16h with burden
• Moderate: 4h without burden and 8h with burden
• Heavy: 2h without burden and 4h with burden

Those activities should be rated as doable without payback, sustainable long-term without eating into overall capacity. Put another way: if it were a job that could sustain you very well financially, you could sustain it indefinitely.

To emphasize can’t vs. won’t, assume those are in a supporting context, where everything else aside, there is no added hardship such as the soul-crushing boredom of some work environments (good bosses, good coworkers, rewarding environment, great pay, etc).

Activities:

1. Grocery shopping
2. Lawn mowing
3. Walking around a city
4. Cleaning the house
5. Cooking
6. Reading a book
7. Playing a challenging video game
8. Writing
9. Playing a musical instrument (learning works)
10. Talking to a friend
11. Playing baseball or cricket
12. Playing ice hockey
13. Shoveling snow or dirt
14. Playing a board game with friends
15. Driving a car
16. Skiing
17. Customer service
18. Talking on the phone
19. Answering a questionnaire
20. Watching a movie or TV show a home
21. At the cinema
22. Attending class on a light topic

Also need to answer how long in days you could continue doing this every day. Basically allow from once a year to all day. You could pleasantly do 4 hours of shopping but could likely do 12-16 if you had to.

How much would you want to do vs how much could you maximally do. What would be a burden vs. what wouldn’t.

Answer at your best, your most common and your worst. It has to take into account fluctuations.

 

[Trish]

It's certainly an improvement on SF36 but it leaves out two very important things:
1. cumulative effect over a day of doing several of these things

I class myself as borderline moderate to severe today and would be able to do 4 of the things on the list without detriment, but only if I did them one at a time with long rests in between and not too often in the day. If I had to, for example repeat each of those 4 things every hour through the day, I would be a wreck by the end!

2. differentiating severe and very severe levels.
Your activities are almost all, apart from feeding yourself, way outside the range of someone bed bound with severe ME, and not even to be contemplated by someone with very severe ME. There is a vast chasm between my borderline mod severe where I can just about care for myself, and someone needing 24 hour care.

I think it's best to have separate scales for physical and cognitive function, not mix them together. That gives a much clearer picture of an individual's state of functioning. Some of us are crap physically but relatively OK cognitively, others the reverse, and some really struggle with both.

I like the idea of 'today' rather than 'over the last month etc. It's quick to do and could be repeated say once a week, or even every day to give a really good picture of fluctuations and trends in a person's functioning.

 

[Simbindi]

The problem with just asking if you can or can't do a particular function still has the issue of not being able to capture the true disability of a fluctuating condition, so I don't see how this type of 'black and white' approach can work for PWME. People will still interpret the question in different ways or literally (meaning they will look much more functional then they are). That's why disability groups spent years working with the DWP to get this stipulated in the actual PIP legislation (it wasn't specified in the original draft legislation but was added as an 'amendment' which has made for complex case law judgments). It's also why the Care Act (2014) is worded the way it is, many people (for example with autism) would tell a social worker they could do an activity, like shopping or preparing food, even though in reality they didn't actually do them in their everyday lives due to their autistic inertia, ADHD etc.

https://www.mypipassessment.co.uk/updates/what-are-the-reliability-criteria-that-are-used-during-the-pip-assessment/#:~:text=PIP assesses your ability to,to undertake tasks “reliably”.

https://www.disabilityrightsuk.org/...ion/personal-independence-payment-regulations

Maybe such a questionnaire would require a specific instruction regarding being able to do an activity 'reliably' plus a definition of what 'reliably' means in the context of the questionnaire?

 

[lunarainbows]

2. differentiating severe and very severe levels.
Your activities are almost all, apart from feeding yourself, way outside the range of someone bed bound with severe ME, and not even to be contemplated by someone with very severe ME. There is a vast chasm between my borderline mod severe where I can just about care for myself, and someone needing 24 hour care.

I was going to say this. I score 0 on that score for bad days, 1 (feed myself) on good days. and yet I can get a lot worse than that and there’s no way to record that. And even when I get better, I’m still really only ever at 1.

 

[Daisybell]

Interesting list @rvallee - there is nothing on that list that I can do indefinitely or without payback, and I am mild. Some things I cant do at all.

 

[Simbindi]

I think the list needs to cover more severe disabilities. Even the ESA and PIP mobility looks at things like can you stand and transfer from one seat to one next to it. Walk less than a metre, between one metre and 20 (for PIP), mobilise using aids (such as a manual wheelchair) less than 50 metres (ESA). Press a button on a keyboard (ESA). Communicate a simple message (ESA). Etc. So maybe it would be worth looking at some of these activities for ideas?

 

[Simbindi]

The other issue is that I never know if I can complete an activity until I actually start it as I can never assess my own functional ability, which fluctuates even minute to minute, as well as hour to hour and day to day. Starting activities are also very problematic for me, but that may be because the M.E. has worsened my autism and ADHD, so I have 'cognitive inertia'. However, I am able to state whether I can reliably do an activity or not (usually not).

 

[Barry]

I think the big problem, as others have intimated, is what is "normally"? What is normal for my wife, is that her ability to do stuff varies hugely, across hours, days, even from one minute to the next. Normality is itself a moving target.

So I think the basic idea is good, but the problem above means I don't see a datum that people might work from.

 

[Simbindi]

Other suggestions for the list:

Can you tolerate a light being on in your room? For one minute, 30 minutes, an hour etc.?
Can you tolerate the sound of voices in your room/outside? For one minute, 30 minutes etc.?
Can you tolerate the sound of traffic outside your room?
Other normal noises etc.
Can you hold a conversation with someone you know? One minute, 15 minutes, 30 minutes etc.?
Can you communicate verbally with someone you don't know? A simple conversation, a normal conversation etc.?
Can you communicate using a normal telephone?
Can you communicate using a text phone (if you had one)?
Can you compose a simple email message?
Can you compose a complex email message?
Can you read a simple email message?
Can you read a complex email message?

 

[Simbindi]

I'm wondering whether we could construct a list of, say, 20 items that would separate the mild/moderate/severe grades of ME. This test applies to today: not to a good day, or a bad day.

But what if doing one thing off the list means you can't do the other things? It still has the problem of being completely subjective as the person cannot know if they can do the activity unless they actually try to do it, their answer would be a 'best guess' hypothetical one if based on 'today'!

Edit: and they wouldn't know if preforming the activity would result in PEM later the same day, the following day, the next 24-72 hours etc.

 

[Arnie Pye]

Dealing with people face to face is something I struggle with, and the effects on me depend on lots of things. I can talk to my husband with less PEM than I could talk to a doctor or a policeman or a dentist or a shop assistant trying to sell me something.

I must admit that I'm not sure whether this problem is more to do with my deafness than any physical stamina issues or PEM or anything else of a similar nature.

 

[Simbindi]

I think it's best to have separate scales for physical and cognitive function, not mix them together. That gives a much clearer picture of an individual's state of functioning. Some of us are crap physically but relatively OK cognitively, others the reverse, and some really struggle with both.

Some activities, like physically shopping, require both physical and cognitive functioning. Other activities, like placing an online supermarket order could be more reasonably conceived as 'cognitive', although it would still require the person to be able to use a computer or smart phone and physically type or use voice recognition software.

So it may be worth carefully phrasing questions, for example, 'Can you physically dress your lower body?, 'Can you physically dress your upper body?' 'Can you physically wash your upper body?', 'Are you cognitively able to place an online shopping order?'

 

[Peter T]

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.

 

[Graham]

Tier the activities from light to heavy.

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.

Your activities are almost all, apart from feeding yourself, way outside the range of someone bed bound with severe ME, and not even to be contemplated by someone with very severe ME.

Yes, but we are looking at it from the point of grading the finer distinctions between us, not from the chasm between us and being healthy. That's where we start getting into the messiness of some days being worse than others. If, say, you function at 10% (whatever that means), then one day it is only 5%, for you that is a major disaster. From the healthy person's point of view, 10% is a major disaster – the difference between that and 5% is less significant: both are terrifying prospects.

I deliberately kept away from anything to do with cognition/brainfog/inability to tolerate light etc. as I knew even the physical focus would be difficult. Why set myself an impossible problem when I can play around with one that is merely unbelievably difficult?

People will still interpret the question in different ways or literally (meaning they will look much more functional then they are)

Agreed, that's why we would need to focus on the instruction at the start as well. I'd be tempted to say that each activity only has to be done once in the day, but the major emphasis is on the heavy emphasis of "without any undue consequence". I would argue that if someone was unable to repeat the action after a the kind of break that a healthy person would have (in other words, unable to repeat it reliably and regularly), the answer would be no. 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.

The two questions are, can we make a scale that could be more useful than the sf-36, that is less susceptible to external influence, and could it give a reliable indication of how severe someone's ME is in comparison with those in good health and with other conditions?

 

[Simbindi]

I cannot use a shower due to sensory issues as I cannot tolerate the feel of the water spraying on my skin. I wash myself by bathing. Therefore it seems better to ask people whether they are able to wash themselves, rather than assuming they can shower. The PIP criteria split washing into upper and lower body, which makes sense for people with joint and muscle problems, and to a degree those with fatigability problems. So it may be better to ask something like, 'Can you wash your whole body without help?, ''Can you wash your hair without help?', 'Can you take a shower or a bath with the help of another person?' etc.