Measuring the severity of ME

A very worthwhile exercise @Graham.

From my guineapig perspective I went through your list and had a total of 7 things I can do, but afterwards realised that it was unlikely that I would be able to do all those things on one day without payback. Each activity independently is different from cumulatively, which we all know.

I suspect I’m not being specific enough about ‘today’, and I think it may also reflect that I’m not as good at pacing as I would benefit from being. I might find it easier to fill in something at bedtime and then add to/amend the following day based on the delayed effect of the day before with an additional followup/feedback question or section?
 
Apologies in advance for seeming frivolity and thread diversion.

I've been wondering what you mean by a 'full shower'. I'd really like to be able to have 'half a shower' at a time, but the added activity of undressing, showering, drying myself, dressing, and if I've washed my hair in the shower, drying my hair, can't be spread over more than one day. Since I've been without carers to help me shower and hair wash because of Covid, I've experimented with all sorts of variations of basin washes and showers of different bits of me on different days and concluded that the best for me is to do the lot in one operation in the shower as infrequently as I can bear, and put up with having PEM the next day.

It reminds me of the idiotic advice to my daughter who was being 'helped' by an OT to break down her activities in smaller chunks. One suggestion was to break up visits to the Library. We had fun imagining how you could go to the library one day, select your books the next day, and travel home the day after!
 
I don’t think that’s frivolous @ Trish - the complexity of activities in real life varies and that’s the sort of thing that people wonder about when filling in questionaires.

Wrestling with that sort of thing that could potentially use up my cognitive capacity very quickly to that point where I can’t fill it in properly and resort to abandoning the exercise or guessing the answer. I appreciate the attempt here to wrestle with that because generally activity questionnaires do my head in.
 
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I think that's the problem with listing individual activities. For example, 'lifting a bag of shopping onto a table'. Does that include getting out of bed, walking to the kitchen, fetching the bag of shopping from where it is at the moment, which is unlikely to be conveniently beside the table, then lifting it. Then doing whatever was planned once it was on the table, since shopping doesn't normally get left just sitting on a table. Lifting a bag of shopping onto a table is not something normally done in isolation from other activities.

For us, each activity is about its part in the cumulative pattern, so breaking them into individual activities to decide about just doesn't really work for me.

I guess it works in a rather crude sense of knowing most things on the list I can't do anyway, even if they are the only thing I do in the day. It's the things that come more within my range, that I could do once in isolation, that present me with a problem in knowing how to fill in such a list.

There is also the question of 'can do' in the sense that we may do some things because we have no choice. Would we feel obliged to say we can do them because we actually do do them, but it keeps us always on the edge of crashing, and if we had help we wouldn't do them.
 
Graham said:
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.
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Possibly some of these points have been addressed/are not relevant to this discussion --- haven't read the other posts!

A personal thought is that monitoring activity/ability to walk X metres---, and finding low activity/low functionality, will presumably be open to challenge i.e. on the grounds that patients are deconditioned, as they are housebound, and they are housebound because they do not leave the house to exercise! Therefore, they need to be "encouraged" to increase their activity levels --- PACE --- CBT --- GET!

Also, I'm wondering if activity monitoring/ability to do physical tasks could be made more objective i.e. by moving away from questionnaires and using some form of electronic monitoring instead? There was a recent study which showed that activity monitoring, using an electronic device, gave more accurate data i.e. compared to questionnaires (people overestimated their activity in questionnaires) - @Jonathan Edwards responded favourably re this study. I think this study used a stressor (tilt test?) and then monitored ability to function in the days which followed. The control group, and the people with ME, were clearly separated i.e. by the activity monitoring data.

Solve recently launched a "patient registry"; this incorporates an app which participants use to monitor their activity levels - still relies on the patients "subjective" assessment though.

I'm part of this group European ME Coalition (EMEC) - https://europeanmecoalition.com/

@Michiel Tack
 
Andy said:
I don't know about anybody else but distances don't really mean that much to me.
Graham said:
Walk 100 yards
Walk several hundred yards.
Walk a mile.
Run 100 yards.
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I would struggle to give an honest answer to these questions due to that lack of meaning.
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My wife can do all but the last, she cannot run. But the others are highly variable, depending how many "mini rests" she gets and all manner of other nebulous variables, or whether she has the "power assistance" help of our beautiful dog, also known as her "outboard motor" :D.
 
I think that many of you have strayed quite a long way from the original concept, and in doing so, have made it much more difficult. It wasn't intended to measure in any way the complex nature of ME, to reflect its variability, to give a picture of what could be managed in a whole day, or to describe a person's ability to return to work. It was simply meant to be a measure of what different people with ME could actually manage to do as a one-off activity, and to see whether there was a hierarchy of activities that in some way reflected our more complex situations.

It's a bit like a tick list for house-hunting: semi-detached, three bedrooms, bathroom, downstairs toilet, garage, garden, etc. The list doesn't tell you what the house is really like or whether it will suit you, but it does create some sort of categories so that you can anticipate more what you are dealing with.

If I had two people with ME and one scored 12 on the list, and one scored 5, would that be enough to tell me that the latter person was more badly affected than the former? If so, the list works. If not, it doesn't.

Barry said:
My wife can do all but the last, she cannot run. But the others are highly variable, depending how many "mini rests" she gets and all manner of other nebulous variables, or whether she has the "power assistance" help of our beautiful dog, also known as her "outboard motor" :D.
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I'd suggest that if she needs a mini rest, the answer is "no

Jonathan Edwards said:
I am wondering how you see the statistical analysis implications of the score system Graham?
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Ah, now there's a problem. People quite happily perform all sorts of calculations with the sf-36 data, treating it as a scale, which of course, it is not. The problem with push button statistics is that people can perform all sorts of sophisticated tests without actually having to think carefully about the data. When all I had was pen, paper and a slide rule, I didn't carry out any statistical calculation until I was sure it was necessary.
So my first question to you would be, what do you want to measure and why?
 
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.
 
Now that's an interesting alternative. I suppose I would previously have been 9/10, whereas now I am more 7/8. Notice that, as with most people, I am unable to give a straight answer. Do you think it is bred into us?
 
Graham said:
Ah, now there's a problem. People quite happily perform all sorts of calculations with the sf-36 data, treating it as a scale, which of course, it is not. The problem with push button statistics is that people can perform all sorts of sophisticated tests without actually having to think carefully about the data. When all I had was pen, paper and a slide rule, I didn't carry out any statistical calculation until I was sure it was necessary.
So my first question to you would be, what do you want to measure and why?
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I don't want to measure anything, Graham. I am even more extreme than you. I have no interest in statistics. But I do think it is legitimate for people to ask for a formal test to show that two populations in a controlled trial are different, even if what is MORE important is the nature the difference.
 
Simbindi said:
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?
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Simbindi said:
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?
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good idea but the read an email message should say read and understand - i can often read each word accurately but have no clue what the message of the sentence is.

Simbindi said:
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.
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Yes i think including the PIP phrasing and spelling out what 'normally' means, would be key. @Graham as Simbindi keeps referring to i think the benefit wording is good to include for clarification. The guides say something like can you do the task 'reliably, repeatedly (as many times as might reasonably be necessary), safely - including without any negative consequences such as pain/increased fatigue, and in a reasonable timeframe'.

You could include the 2 phrases below as examples

Graham said:
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.
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Graham said:
'd suggest that if she needs a mini rest, the answer is "no
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might it not be a good starting point to approach this like a research paper.
ie come up with a protocol to make it clear exactly what you are trying to achieve.
Namely is it a scale of severity for pwME or some kind of disability scale.

If it is the former then that must be made clear that it cannot be used for any other purpose.

One of things I dislike with the existing ME severity scales is trying to fit them into the mild, moderate, and severe categories. I would prefer a 1-10 scale with 10 being the most severe and 1 the least.
The other is the descriptive nature ( like @Trish has done ) of all the existing scales which cannot possibly cover all the different scenarios and force you to pick one or two that are closest.

Another approach is to go by symptom severity and frequency. Again this should be made clear that this is in relation to ME symptoms and not general level of disability.
 
It feels a bit like we're trying to find a way of describing something as complex as an elephant by doing a scale for the shape of it's ears. You pin one thing down, then realise there's a whole elephant there you haven't assessed.
 
Jonathan Edwards said:
How we we deal with the person who has had a stroke and also has ME?
Presumably the deficits need to be reasonably ascribable to ME and there has to be a way to nullify any scoring due to the stroke?
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To be honest, I wasn't particularly interested whether the limitations were due to ME or a combination of factors.

This is what I had in mind, and if I had had a normal brain, I would have realised that I needed to explain that first.

People, whether patients or researchers, often claim that something they have found improves ME (or whatever else it is). Researchers keep using graded scales such as the sf-36 or Chalder fatigue scale which I think are far too easily manipulated or misinterpreted.

I was looking for a simple, clear-cut, yes/no ranking for what a person can physically do. I'm not interested in how often they can do it (it isn't for work), but in reality if they can only walk 100 yards once in a day, and have to refrain from other activities, then that isn't a "normal" response to walking 100m. So the question about lifting a bag of groceries is to rule out those people who just can't do it without a cost. If I lift a bag of groceries on to a table, it has no particular effect on my functioning the rest of the day, so I would say yes. But I couldn't do it hour after hour: I can't do anything hour after hour – that's a different measure.

I don't think the PIP instructions are relevant here: in effect they measure stamina as much as physical limitations. I think my next step, unless someone can beat me to it, is to devise a simple but clear instruction at the start.

The intention was that it could be used to measure distinct improvement. Then, if anything really helped in a significant way, I would expect it to show up on the scale. It's arguable that something may have had a much smaller effect – too small to register on the questionnaire. But if that were the case, I would argue that the effect is too small to be a reliable effect.

So it is simply meant to be a ranking that can reflect a distinct change in physical abilities. It is not meant to be a description of how a person with ME finds life: that is far too complex a situation to give just a number to. Nor is it intended to represent the complexities of navigating a life with ME. I'd not dream of trying cognitive abilities.

Sly Saint said:
One of things I dislike with the existing ME severity scales is trying to fit them into the mild, moderate, and severe categories. I would prefer a 1-10 scale with 10 being the most severe and 1 the least.
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Yes! My thoughts were that a ranking from 0 to 20 could be fine enough to measure distinct improvement, but hopefully chunky enough to cover minor fluctuations.
 
Going by posts I’ve seen on social media there are people with ME who work or study part time but are not able to do any cleaning or food preparation or any social activity at all relying on support from formal or informal carers for the daily living necessities. If the descriptors assume a standard level of progression of ability through all these types of activity it isn’t going to capture those who spend their energy on one type of activity to the detriment of others.
 
With M.E., surely fatigability is a key symptom? So being able to repeat an activity is highly relevant. The same with PEM. Any scale that doesn't address these concepts isn't going to register a meaningful improvement and actually that in itself means it would be easy for a practitioner to influence how a patient scores the items.
 
Just because UK ESA and PIP benefits assess a specific set of (very limited) functional abilities, doesn't mean that this approach is actually the best approach for what they are intended to do. Many people argue that these assessments should be looking at how an individual can manage in the 'real world', the actual job market, what care and support they need etc. But with M.E. there is no biomarker, so we assess severity based on functional capacity. Isn't what's important then to create a good selection of activities (I would argue including cognitively demanding ones is essential) that capture the full range of how our symptoms limit us?
 
Barry said:
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.
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This definitely works best with relative recency, and in those who had a healthy life as adults before. Or at least it's more accurate in that context. It's very hard to capture it properly in the standard circumstances of the 6 months of arbitrary delay, even less so that most people go through many years before the process starts.

So at least COVID offers the opportunity to do this. Without this context it would be hard to properly capture, but we "fortunately" now have this context available to us.

Because once that's done, it's possible to do the same thing as with the SF-36 and build a stratification based on a large population sample to serve as comparison, so that it's no longer comparing with your former health self, but with a normalized sample large enough to account for the diversity out there. Barring extremes, most people are within the same range of things they can do and sustain for long periods.
 
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