Kelly McLellan seeks feedback on his draft Edinburgh ME Scale

@Trish, I started off hours per day but that became complicated because of fluctuation. A weekly measure averages this out. However, I do suggest in the intro that people use the daily averages and create a functional range. Because of the way the scale works, their norm will be closer to the bottom of the range than the top.

@JemPD, The descriptors weren't really created to explain our limitations to other people with ME (although that has come in handy). The descriptors mention "feelings" and falling asleep because these are common. I don't think that they imply that they are normal. I don't have the negative feelings either but I've talked to a lot of people with ME who do and I wanted to get across that this isn't unusual. A lot of people who suffer from severe exhaustion do end up falling asleep during the day. Frequently because they aren't able to do anything else - not because they need the sleep. I think that this is worth mentioning (although see different scales comment below).
I'm actually a bit insulted that you likened it to an NHS CFS clinic. That's quite a low blow.
As for your 'highly developed skill' comment... I'm at a bit of a loss on this one. I used it because I thought that it was obvious and an effective way to get the meaning across. Reading and listening are usually highly developed skills as they are learned skills that have been developed through a lot of experience. Some forms of reading are very easy, some are not. Some forms of listening are easy, some are not. How easy they are depends on the individual and their skill level. I assure you, not everyone find listening easier than reading. However, my use of highly developed skills implies skills that, under normal circumstances, should be considered second nature or practically effortless.

From what you are saying, I am now thinking that there are different scales required based on the same criteria. One with descriptors for the medical profession, one with descriptors for people who don't know ME, and maybe one for people with ME.

 

@Bill, At the moment the scale doesn't address the top end at all and I am working on this. However, I don't think that you've understood what 100% is. 100% represents someone who doesn't have ME and is perfectly healthy, and probably fit. If you didn't meet that requirement than you couldn't be 100%.

The complication for people with ME at the top end, is that there is variation in capability for perfectly healthy people i.e. not everyone fits the 100% descriptor. This is why the top end is difficult to address properly.

Back when you were working 60 hours a week, your deficit may have been obvious at the time, or it may not have been. Identifying it should give you an idea of where you were on the scale at the time. Perhaps the easiest way to see where you were would be to compare what you would have been able to achieve if you hadn't had ME (or by using a similar, but healthy, person to compare your activity against) with what you actually achieved. Alternatively, you may need to compare your activity levels to "normal" over a longer period of time.

It could be that you were 99% but I doubt it. I would bet that you only appeared that high superficially and were probably 90% or 95% at the most.

 

for reference, here is my narrowly-scoped contribution:

http://thekafkapandemic.blogspot.com/2013/01/an-objective-severity-scale-for.html

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i think the exponential scale is useful.

think about whitney dafoe being a photographer, then becoming housebound, then bedridden. what labels make sense? where should the labels bunch up more?

as pwme progress, they go from one qualitative state to another by factors, not amounts.

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example:

if you can leave the house once per year for a couple of hours instead of once every 4 years, you can get things done that are extremely needed, such as going to a doctor.

it is an enormous improvement in health and quality of life. you might not think so if you are healthy, but that's because you do not experience it. as a result you don't think of all the impediments and needs.

now let's look at a milder level:

if you can leave the house 80 times per year for a couple of hours instead of 20, that's the same on an exponential scale, but an improvement of 60 on a linear scale.

it's huge, but not qualitatively /more/ huge than the previous example.

if it were a linear scale, you'd have to say the pwme in this example improved quality of life by ridiculously more than the previous example. vaulting over several categories.

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thus, the qualitative difference [to which you would apply labels like mild or moderate] is determined by factor, not amount, for this measure.

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the exponential scale also captures the wide range of severity [ http://thekafkapandemic.blogspot.com/2013/03/three-damaging-myths-about-severity.html ].

all scales will have drawbacks. but the exponential scale is useful.

 

I have been working on an alternative scale. It may please people even less than before though.

Like the current scale it is based on four categories of activity:

Work - Moderate - Light - Nothing

The 100% assumption is an output of 70 hours of work per week, 28 hours of moderate activity, 14 of light activity and the rest of the time sleeping (nothing).
Sleeping/nothing is considered to be 60 Calories per hour (a basal metabolic rate of 1,440 per day).
Light activity is 1.3 times this (78 Calories per hour)(sitting talking, eating)
Moderate activity is 2 times this (120 Calories per hour)(cooking at home)
"Work" activity is 3 times this (180 Calories per hour)

Total Energy output is 2916 Calories per day
As before, this is meant to represent peak output.

To put that into context, female average basal metabolism is around 1450 Calories.
The average female needs around 2,000 Calories a day to maintain her weight.

I looked up various calorie-activity tables. The hourly rates for most activities are very high compared to the ones that I used. An average person (man or woman) is only supposed to use an average of 35 extra Calories per hour over the day when not asleep (in the model above this would be an average of 95 Calories per hour). Which would suggest that the average person really doesn't do much at all... I don't get it. A desk job is supposed to use 180 Calories per hour. At that rate the average daily calorie use would be consumed in 4 hours 40 minutes and then you would have to sleep the rest of the day.

The following scale is based on the extra energy that we have available to us (100% to 0% extra energy). It reserves basal metabolic rate. It therefore doesn't cover the reduced metabolism of people at the low end, how organs shut down, and how people die from ME.

On this scale, all energy expenditure is equivalent.
To work out the available hours of activity for each category, I calculated the available extra energy at each "decile" and then tried to maximise the more demanding activities.
You can borrow from one category to feed another but you will have to pay a price by doing more nothing (at one end) or less activity/work (at the other end).
The shape of the scale is determined by the conversion factors used to workout the energy demand of the activity levels relative to each other.

100% 70-28-14-0
That is 70 hours of work per week (10 per day), 28 hours of moderate activity per week (4 per day) and 14 hours of light activity (2 hours per day).

90% 59-30-23-0
That is 59 hours of work per week (8.5 per day), 30 hours of moderate activity per week (4.25 per day) and 23 hours of light activity (3 hours per day).

80% 51-28-26-7
That is 51 hours of work per week (7.3 per day), 28 hours of moderate activity per week (4 per day), 26 hours of light activity (3.7 hours per day) and 7 hours of rest (1 hour per day).

70% 43-27-26-16
That is 43 hours of work per week (6 per day), 27 hours of moderate activity per week (4 per day), 26 hours of light activity (3.7 hours per day) and 16 hours of rest (2.3 hour per day).

60% 35-26-25-26
That is 35 hours of work per week (5 per day), 26 hours of moderate activity per week (3.7 per day), 25 hours of light activity (3.6 hours per day) and 26 hours of rest (3.7 hour per day).

50% 27-25-24-36
That is 27 hours of work per week (4 per day), 25 hours of moderate activity per week (3.6 per day), 24 hours of light activity (3.4 hours per day) and 36 hours of rest (5 hour per day).

40% 19-24-24-45
That is 19 hours of work per week (2.7 per day), 24 hours of moderate activity per week (3.4 per day), 24 hours of light activity (3.4 hours per day) and 45 hours of rest (6.5 hour per day).

30% 10-24-26-52
That is 10 hours of work per week (1.4 per day), 24 hours of moderate activity per week (3.4 per day), 26 hours of light activity (3.7 hours per day) and 52 hours of rest (7.5 hour per day).

20% 2-21-39-51
That is 2 hour of work per week (minutes per day), 21 hours of moderate activity per week (3 per day), 39 hours of light activity (5.5 hours per day) and 51 hours of rest (7.5 hour per day).

10% 0-11-21-80
Not capable of any kind of work level activity. 11 hours of moderate activity per week (1.5 per day), 21 hours of light activity (3.5 hours per day) and 80 hours of rest (11 hour per day).

5% 0-1-25-86
1 hour of moderate activity per week (minutes per day), 25 hours of light activity (3.6 hours per day) and 86 hours of rest (12.3 hour per day).

3% 0-0-17-95
Not capable of any kind of moderate activity. 17 hours of light activity (2.4 hours per day) and 95 hours of rest (13.6 hour per day).

0% 0-0-0-112 -> 0
Not capable of any kind of light activity. Unlike the other scale, this 0% isn't dead but is more like a comma.

 

Thanks very much @Samuel! Those links are brilliant!

 

No Kelly, I wasn't 99% or 95%. LOL. More like 65%.

Yet for 8 years, on one job, a 60 hour week was my minimum work week. I actually worked did 12 days on and two days off for those 8 years. Often a hundred plus hour weeks with firm deadlines for delivery.

While I was somewhat atypical, I'm sure, the proposed scale would define me as someone who was completely well, and "by definition a person who does have ME." Nothing could be further from the truth.

I was highly aware of my hellish illness every single day, as I have been every day of the 34 years I've had ME/CFS. And I'm telling you that I find a scale that would define away my illness based on the number of hours I've worked at times disturbing and, frankly, insulting.

Bill

 

The other issue here is that people tend to work longer hours in some cultures than others. In the UK, 37.5-40 hours per week is considered 'full-time'. In other countries, you might work 60-70 hours just for employment. Obviously, that excludes things like cooking and dressing (which you include in 'work'). When you factor those in, the numbers vary massively.

What you need as a reference range is probably a comparison to the local/national average. So at 100%, you can work full-time and do all daily living activities that would be expected in your culture. At 50%, you can do half of those things, but the quantities themselves might vary (so you do 75% of daily living activities but only 25% of full-time work).

Now we're getting back into subjectivity, but I think any scale like this will be subjective and very context-dependent, otherwise healthy people in the UK would be considered disabled in cultures where the working week is 25% longer or more.

Edit: Didn't mean to include the trailing first line, which read: 'If you want to use step counts, may I suggest that 5,000 equates to 100%? Then 4,000 steps (average person) is un'

 

@kmclellan Hi,

I probably shouldn't have posted last night as my comment doesn't make a lot of sense, i was struggling & i probably could have worded things better. Non of what i said was intended as an insult to you personally, it wasnt meant as a 'low blow' - as i said i applaud you for working on developing this. Its a challenging task to say the least. But that some of what you said does smack of their ideas....

I know the descriptors were'nt developed to explain to people with ME.... otherwise i wouldnt have pointed out what i did. Its precisely because their intention is (i assumed) for them to be used to explain to people who have no knowledge/who frequently have knowledge which is based on BPS narrative, which makes it, imo very important to keep feelings, and comments about sleeping in the day being unhelpful to the sleep cycle, out of it.

- Because as you'll be well aware, the current climate/prejudices/ignorance + erroneous but prevailing medical establishment thought, already assumes that our feelings & poor sleep hygiene are one of the roots of our problem, & should therefore be the target for intervention. So i think it's unhelpful to draw attention to those aspects when they aren't by any means standard & actually far too much attention is already paid to them. Inappropriately so.

- As i'm sure you'll be aware very sick kids in particular are often put on a 'sleep regime' where they are prevented from sleeping in the day, consequently making many of them feel a great deal worse. I'm not suggesting that you are intending to reinforce the view that people who're very ill should be prevented from sleeping in the day, but that a health professional, especially one who is attempting to prove their emotional/behavioural view of ME, will likely pick up on that sentence (as with the emotion related ones) & twist it to appear to prove their 'see its your feelings and sleep pattern that are to blame' approach.

And as a sufferer of course i understand that we're all different & that some people do feel like a failure, I wasnt suggesting that my experience is the only or even predominant one. And for others with ME who do feel that way, perhaps it would be helpful to see that they are not alone in that.
But given the tendency for Drs/pwithoutME to focus on our feelings & see them as the heart of the issue rather than a natural response, many health professionals i know would just zoom in on those parts & see them as conformation of their BPS ideas.

It's those things, and terms like 'boom & bust' (which is problematic & part of the BPS model for ME - see here for more on that https://www.s4me.info/threads/boom-bust-wheres-the-evidence.3335/ )
which gave it similarities to a CFS clinic document, which i felt sure you'd want to avoid. - Because these 3 ideas - that our feelings are a big part of the problem, that our sleep hygiene is poor & that boom & bust is a problem, are classic BPS narratives.

I'm sorry if that felt like a personal insult, - but what i was meaning really was more like 'beware that you dont word thing in a way that is easy to twist so that it appears to reinforce those erroneous BPS/CFS clinic ideas'.

I think the issue of whether reading is easier than listening/vice versa is a red herring to my point - of course as you say it depends on the person & content, so i shouldnt have included that.
What i was driving at was that the use of 'highly developed' suggests to me skills that are not 'second nature/effortless' a highly developed skill to me might be one that one might use in one's profession such as heart surgery or engineering. That's a 'highly developed' skill to me, which is obviously out of the question at that level of functioning.
Ahhh wait, I think i understand now.... From your explanation here it sounds like you're meaning skills that are very well developed or historically learned? In which case i now understand. I interpreted the term differently. I wonder if i'm the only one that would interpret 'highly' to indicate 'higher' skills, rather than very well practised/developed/second nature? Worth thinking about perhaps. Personally i think your description of a 'second nature' skill is perfect as everyone will know what you mean & can relate to that.

It is worth pointing out though, that sometimes/often at 12.5% those well learned/second nature skills - like understanding spoken word/reading text are not readily available, at least not to the usual standard, certainly in my own experience. - which is why i think i was thinking about not being able to read but being able to listen. Perhaps changing that last sentence to say that they may still be available rather than are still available? or that they are still be available in a limited/reduced way.

good idea

ETA my apologies if i dont respond to any reply i have worn self out now need to rest & focus on other things for a bit. If i'm not able to come back anytime soon i wanted to wish you the best of luck with this project Kelly.

 

I guess what I'm trying to say is that I know from experience that it is sometimes possible for a person with ME/CFS to work (if it is the right sort of work) at 100% in such scales and still be suffering from this dreadful illness. Ask me how I know.

This truth doesn't take anything away from those who are so incapacitated that work is impossible. I've been in that position too. I remember what it was like to be bedbound. In recent years so-called "mild" has often given way to moderate. It sucks. And I fear becoming more incapacitated as I age. Who knows?

At this stage in my life the 100+ hour weeks I worked when I was younger would do me in. They were very rough at the time. But being able to bank some savings meant being able to start a family and not to be completely destitute. So I pushed through against supreme exhaustion at a job I was really good at and one that at least wasn't physically exhausting. I sure as heck suffered with ME/CFS the whole time.

I do think arbitrary scales that attempt to "by definition" exclude those who have worked full time from having ME are deeply misguided. It is too broad a brush IMO.

As you suggest, the typical working hours of healthy people in the television/film industry in the US (say 75 hour weeks) would make the typical healthy Briton who worked 37.5 hours look like a 50%er. Those health Britons are not disabled, nor are they layabouts. So this is not really that helpful a metric in my estimation.

As we all know, this is a complicated illness with a wide range in how it affects people. Delegitimizing the experience of those who have been able to work with this illness (despite the hellishness) doesn't sit well with me. It feels like a slap in the face, to be frank.

Bill

 

Also how different cultures prioritise work vs free time. In Norway the general attitude (doctors and "the disability office" have told me this also) is that before you should think about trying some % work - you shold first be able to do the same daily living activities as a healthy person, including having a hobby, doing activity with family/friends, going for a holiday etc.

This gets confusing when using scales made for other cultures, when the assumption is that work is the last thing to go, or at least work and daily living would be decreased at the same rate. I've seen people use other scales - find the general description they feel is similar enough to themself, but then a "can work so and so many hours" stops them up - oh, then I must be much sicker then I think, because I cant work", and then picks a more severe rating.

 

I think this scale is a good beginning, I'm having a lot of recognition in the writing.
25% is you describing me perfectly!! I was actually just thinking of looking for 10 hours of work at home, but then I need help with other things (like get my groceries delivered). 2500 steps are ok, 4000-5000 is my maximum. If I really have to, I can do crazy maximums for one day(like 10000 steps), but then I need a week to recover. I do fall asleep during the day when I went over my maximum.

I really liked your difference between cognitive (or physical) activities that you are highly developed in. That is something that I have felt, but I've never found a good description. Things you can already do, cost less energy, so you can more easily do them. New things cost a lot of energy. I read books I have already read just because it costs me way less energy.

I think the 100% is not so strange. It will always be an average. When I was healthy, I would do around 20.000 steps a day. 10.000 is just a healthy minimum (that amount limits your risk on heart disease), you get that when you take a half hour walk in your lunch time (+the rest of your day)
Even sedentary people can train to do more steps, we can't. The 100% is high because healthy people might not do as many steps, but they do have the possibility if they wanted that.

 

@unicorn7 Thanks very much!!!

 

That's also a problem, indeed. For it to work, there would need to be scientifically derived averages for each of the measures included, rather than assumptions or guesses. That may be hard to cobble together, although it may be feasible. It would certainly strengthen the measures used.

 

@Bill, You still don't seem to be understanding the scale, and it has taken me a while to understand where you are coming from because I couldn't understand where you were coming from. I have changed the wording to say, "By definition a person with ME cannot be 100%." Does this help?

So the maximum that you could have been on the scale was 99%.

You keep focusing on the hours of work that you did but it isn't about work per se. It is about the amount of activity that you did and it's intensity. Obviously, if your work was low intensity then you could do more work than normal. The scale makes references at many points to the ability that everyone has of exchanging one activity for another. It is more than possible that you were doing this to maintain a 60, 75 or even a 100 hour work week but even if you weren't that doesn't diminish your experience of ME at the top end.

You said that you were more like 65%. If that is 65% on this scale's measure then the scale worked. If it is 65% by your own personal scale... then that doesn't mean much as no-one else can relate to your personal scale as they simply do not know what it is. There is no context for them to relate it to their own lives - hence the reason for the scale. If, and this is only an example, you were in the high 90's on this scale what would be wrong with that? You were working hard but you had ME and all the issues that came with it. Being in the high 90's wouldn't diminish your problems just give them a context - one that other people could then relate to. Again, without an external comparison, I have no idea what you actually mean by 65%. To me, 65% could potentially be a level that I could have kept up with a standard full-time job (with juggling) but definitely not a 60 or 75 hour a week job of any description. To me, 100 hours a week would have to be 99% or close to it. 75 hours could potentially be done at 90% and 60 hours could potentially be done at 80% but it would'd be a highly demanding job. On this scale, a more normal job could be done for 60 hours per week at 90% with help and support. You wouldn't have much energy for much else at this level of activity and it would probably feel like a 100 hour a week job for a normal person.

@inox, @adambeyoncelowe, @NelliePledge, I don't think a scale needs to address different cultures if it is written well. We all have a maximum output regardless of where we live. It is simply how we use it that varies. It is trying to get people to understand that which I am finding difficult.

 

This - totally this. It is the potential that we now lack.

When I was well, even if I had done very little for a month or two, I could still go out the next day and walk 8 miles, chatting all the way, without a problem and zero after effects - bar perhaps a slight blister or minor muscle ache. AND I would then be fully functioning in the days afterwards.

I could easily walk 10 000 steps a day, every day, even if I didn't actually always do so.

I could also decide to "get fitter" and within 12 weeks of such a decision, successfully cycle a 2 day maracycle (200 miles over the 2 days), and then go into work the next week, with little more than a few early nights as after effects.

These are real examples of my life before ME. I could easily get myself fitter, by just deciding to do it!

The difference now, is that even though I can mostly average 3000 to 4000 steps a day, I cannot now decide to increase that amount through training. In fact attempting to raise that level is likely to cause my functioning to drop dramatically. I might have a day here or there doing slightly more, but that will come at the cost of fewer steps in the days before and afterwards.

I also walk at less than half the speed I used to - think about that for a moment: before I was ill I passed everyone on the street when shopping as I marched along in a hurry, now when I shop I am passed by OAPs!

Ironically. I am now so grateful for having this improved stepcount to play with. When at my lowest, I spent about 3 years averaging only 500 - 600 steps a day, with an absolute daily max of about 750. That was very tough for me. I got by, and I was lucky to have the support I needed, but it was hardly "living".

Yet even with my now apparently "normal" average step count, I am still not well. Steps are not fully indicative of health. I still can't manage to stay in a busy room for long. I still need rests. I still need to walk slowly - very slowly. I still can't work. I am still ill.

 

I have changed work to High activity.

I just had a look at the Bell scale. I probably saw it years ago. Another scale that really wasn't very good. I am hoping that we can do a better job!

@Bill, I have also explained the origins of the scale to better get across how it is based on an energy expenditure limit and that this limit can be used to support activity in different ways.

 

I can't read it well enough to give any advice right now (bad last couple of weeks) but i don't see much about cognitive issues