Discussion in 'Advocacy Projects and Campaigns' started by Tom Kindlon, Jun 19, 2018.
I like that this scale drops down to half of the previous each score time. This way giving more detail at the lower ends.
I'm a bit confused by the numbers after the % scores - would it be better to state what each one represents with the main descriptor of the level?
It seems on first reading to be a very workable scale.
Thinking about this statement "2,000 steps a day, everyday, is a struggle. Surprisingly, they can still walk 8 to 10,000 steps in a day, as a one off,"
I monitor my steps, and at no point would I go much above a doubling of my average number of steps, even for a single special occasion. For example at a point where I was walking an average 500 steps a day, I once did 950 and it wiped me for weeks.
My ability is better at the moment, but still I would be most unlikely to hit double my normal average on a single day. So to suggest 4 times the normal average as a possibility seems a stretch too far.
(PS I have all my daily steps since Nov 2012 on Fitbit, so I have some evidence to support what I say .)
Sorry to be brutal. This scale is far too complicated. A good scale consists of simple items. Scales are measurement tools, not educational material. People can better learn about severe ME by reading accurate descriptions and real world stories instead of looking at a scale that attempts the impossibly difficult task of fitting a complex and variable situation into a neat order.
The scale arbitrarily associates items such as x number of steps with other items, such as work hours. This is clearly just made up and based on what the author believes is typical.
The scale arbitrarily defines activity intensities. In the real world, the same activity will differ in its intensity for patients.
It is unclear what "Step counts in the descriptors are based on an assumption for 100%" means but it sounds poorly thought out. Step counts vary with age for starters and if a scale includes step counts it must take age into account to remain reliable.
The step from 100% to 50% represents a meaningful and large difference, but with every subsequent step down it becomes more and more ambiguous and harder to actually attempt to validate this scale.
In truth, there are so many sliding variables along which each of us can be at different places, that a scale of descriptors is always going to be clumsy.
I'm not sure any of the descriptive scales I've read work any better than this one. However this is the first one I've seen that is non-linear, and I like it because of that.
For me personally, I can judge quite well how I'm doing based on my step count, but I understand that stepcount is not useful for everyone else, and how I can function whilst at say 500 steps a day average, might not be the same as someone else.
I'm not sure a fool proof scale can be written.
I like it. I just started at the bottom and read upwards until I found my level. If it looked like I could do more than what I began reading I just popped up to the next level. I am 25%.
I think it is a good job. I like little too.
I can see the intention is good. I think the bottom level descriptors seem pretty good, but once you reach the 12.5% level all sorts of things creep in that seem like one person's experience rather than anything evidence based.
For example these statements in the 12.5% section should, I think be removed:
''in many people, this is frequently associated with feelings of failure.''
''Surprisingly, they can still walk 8 to 10,000 steps in a day, as a one off,''
''Concentration to perform most tasks is now limited''
In the 25% section this should go:
''Activity of any sort will impact their ability to concentrate after a short while.''
''an hour every day, some times more, will be spent doing absolutely nothing or next to nothing (bed rest, light meditation, staring into space in a quiet environment, a super easy repetitive task that requires no thought or energy - probably from a highly developed skill). Severe exhaustion often results in falling asleep during the day but this can be very negative as the extra sleep is not actually needed and just results in a disrupted sleep cycle.''
In the 50% section, get rid of ''boom- bust'' and replace with ''push-crash''.
Overall the aim of highlighting the lower levels of functioning by using a halving scale is an interesting idea, but the descriptors are wildly inaccurate and idiosyncratic, and therefore not helpful.
Interesting, it’s making me think, but I am having trouble putting my ideas into words because I walked too much yesterday (in true “push-crash” style).
My impression is (and I may be wrong, because I am ‘only moderate’) that this is a good way of comparing ‘normal’ life with the very limited life of someone who is housebound. As @Keela Too says, it gives the extra detail to the lower end of the scale.
I, too, understood the numbers after the % score for the 100% and then got totally lost. No idea what they meant, sorry.
Totally agree with all of @Trish ’s post.
On Graham’s recent video I rated myself as “50” and that was with me giving ‘generous’ scores to 3 of the questions, so call it “42.5”
Then the SF36 Physical Functioning I scored “35”.
The descriptions on this scale do not ‘ring true’ for me, but then everyone’s experience of living with this condition is different.
I was dismissed. I do not work. I struggle with any housework. I may do 10 hours “work” a week, messing around on the iPad but this is not usually long involved letters or posts to SfME!!
25% I do not do 4000 daily steps and certainly not 8000 (on the 50%)!
“Activity impacts concentration” YES
“Hour staring into space” No
“Exhaustion results in falling asleep” No (the odd doze very occasionally, not even every month)
I call myself ‘walking wounded’. I have a lot of trouble with brainfog and writing (especially when I have overdone it on previous days) but can manage the very occasional 4 x normal daily steps (although I probably shouldn’t do it but I love my family and dog and sometimes you just want to create a happy moment) for a “day out” (well 3 hours).
But even I do not do 2000 daily steps (see 12.5%) in a usual day, I only have my new mobile which measures steps.
Trying out all these scales has just proved that I still push and crash but that is life. Just going to the dentist or speaking to someone on the telephone takes a toll on a person with ME.
Apologies for my ramblings......I did warn you at the start
At 50 % and 25 % it can make sense, but then it gets weird?
At 6 % you could go up to 1000 steps? And then at 3 % you're completly bedbound?
Cutting step counts in half, doesn't make sense the more severe you get. It doesn't take in account that energy for basic bodily functions is constant, and will take a larger and larger part of the total energy.
Also, a scale based on halfing, there is a lot of varity between being 50 % and 25 % that doesn't get described - and it's in this part most patients are?
No. It prefends falling asleep.
Yes, the steps decreased should be more exponential.
Yes, I agree. Hard to quantify symptom experience but there seems to be a big gap here.
Halving the numbers each time doesn't really make sense. A more sensible idea is to use the 10% increments of the MEA or Bell scales. Then your score would be the lowest (or the average) rank that corresponds across a number of variables: work, housework, daily living, etc. Daytime resting hours would probably have an inverse relationship.
I think it's also fair to say that the average person doesn't do 10,000 steps per day. They may be capable of doing it, but we have an increasingly sedentary society, and 10,000 steps is given as a target to improve health not an average!
According to the NHS, the average Briton only does 3,000-4,000 steps per day! I suspect this could work against us if we claim someone 50% disabled can do more than the average person. I'd leave those numbers out altogether.
Thanks everyone for your feedback and thanks to @Tom Kindlon for sharing.
Most, if not all, of the criticisms here are valid. This is why I am sharing it. I needed a larger pool of feedback.
The starting point of the scale was defining what 100% can do and than halving it. I chose to halve for each descriptor as an easy way for people to relate to the impact of ME on people. Some people can relate to percentages easily but most people can relate to halving more easily.
So, as I said, I started with 100%. This is divided into hours of activity and is based on an idea of total available energy for a week. The scale base is simple but how to explain it is what has become increasingly complicated. I see here that some people are looking at it in terms of levels and fitting descriptors rather than using it as a guide and getting a feel for how their capacity fits on a percentage scale. I am not sure how to help people with ME get the best use out of the scale.
I divided this energy into four categories:
Work - Moderate - Light - Nothing
Technically, I feel that there should be a category between light and nothing but this introduced complexity that I wanted to avoid (the implications of this have come up in some comments).
So, I start by basically explaining what these hours are at 100% and then dividing by 2... My main objective early on is to illustrate how reducing capacity can impact people. In particular, the relationship between "work" and "home". I want to get readers to think about how much capacity they actually have as this will tell them where they fit on the scale.
Another issue with interpretations of the scale is people tend to be more aware of their daily activities rather than their total weekly activity (which the scale is based on as it averages out daily fluctuations).
So my first task is to try and get people looking at the scale in the right way (if we can). Initially, I would like to avoid nit picking the descriptors if we can. We can then go onto the descriptors.
P.S. I agree that this is not scientific, but you have to start with an hypothesis before you can test it. The hypothesis here is that most of the limitations that people experience are a result of an impairment in their energy system. Even if it is not technically correct it could be an analogy that is close enough to what people experience to provide a working model.
P.P.S. I agree with the step count comments but I would like to address this separately/in the future. I think that step counts are potentially a very helpful indicator of overall available energy. Technically, the idea behind them is an adjunct to the main hypothesis but that doesn't mean that they can't be useful.
Thinking about your sets of 4 numbers for each level being hours in the week available for different levels of physical activity, how about do it hours in a day instead? Most people don't have any idea how many hours there are in a week, and the numbers are hard to relate to.
Visuals would help a lot to make the numbers come to life.
Pie charts or bar charts divided into hours a day on each activity for each level, possibly with little line drawings of a person walking, standing, sitting, lying to give an immediate impact.
I don't know what happened, but actually mine is the sf-36 physical functioning questionnaire, but when I tried it out for real, the name put people off, so I didn't mention what it was called.
Ok so i a bit foggy so will just give first impressions... sorry they are 'whats wrong' rather than what's right, because thats just what is jumping out at ame as i spot errors easier when i not at my best.
12.5% - The thing about falling asleep, i dont sleep in the day, i wish i did. Severe exhaustion doesnt lead to that & on the rare occasion that i *do fall asleep during the day, i sleep better at night not worse. this smacks of BPS 'sleep hygiene' rules, which is in my experience of limited use in ME.
- "feelings of failure" eh? nah.... i dont feel like a failure thank you, some people might but....
- choosing to be upright for a 'sense of accomplishment'
these 2 are unhelpful, non of it should be about how we "feel".n Introducing emotional components is , oh i cant think of the word. I'll leave it at 'too BPS reminiscent. Its irrelevant to a scale of function & intruducing emotion into the equation to be avoided. Sorry my thinking is 'slurred'.
I dont measure steps but i'm certain that i couldnt do the step count described. I can only walk 20yrs 2-3 times on a very good day so....
How is listening to an audio book/watching a nature programme a 'highly developed skill'? Whats highly developed about it? Reading is much more demanding than listening.
It comes over as having been written by someone who's been to an NHS CFS clinic & sold on some of the terminology/ideas - that may be completely wrong but thats how it comes over to me.
However Kelly McKlellan I applaud you for starting this, for trying, for having a go, with modifications i sure it could be good .
Personally i think the MEA disability scale is, although not perfect, pretty good.
Even the 100% is problematic IMO, with much riding on the phrase "without significant issue."
I've lived with ME/CFS for 34 years. During that time I've experienced severe, moderate, and so-called "mild" forms of the illness. All have been hell.
There have also been extended periods during that time when I've worked very long hours (more than 60 hours a week). Fortunately, this work, including editing a famous American comedy-reality series for television was not physically strenuous and while (while extremely demanding with stress and time pressures) was something that didn't particularly tax me. So I was lucky to have demanding (and very well renumerated) work that suited me well. Most people are not so lucky.
But under the proposed measures you put forth, I'd be considered a person who "by definition does not have ME."
That would be absolutely false. It would be quite a personal affront after what I've endured over decades.
I'd be careful in making blanket statements such as these.
Separate names with a comma.