MEA are updating their Disability Rating Scale - they are asking for comments on current version

I'm sorry, i have completely forgotten how to embed a link to the actual post or even to upload a screen shot of their post where they say coments on current version are welcome. But the fb posts is here on their page Facebook

 

Thanks @Trish

 

I wasn't aware that the MEA produced a disability scale.

I use the Functional Ability Scale that
Action for ME produced a lot

https://www.actionforme.org.uk/uploads/pdfs/functional-ability-scale.pdf

 

These percentages are really unhelpful. Disability doesn't tend to work like this.

I used to be in two different groups for physical impairment. I had enough function to work full time and could sit upright all day, but needed a powerchair to visit other offices in the same building.

 

I agree, it doesn't entirely capture my reality, but find it is useful to be able to say I have about 30% functional capacity on a standardised scale. It gives some idea what that looks like. I have used it for PIP and when talking to our MP - it gives a broad strokes pen portrait, at least - otherwise without context it is meaningless to others.

Although it is somewhat like the pain scale - apparently around 8 equates to childbirth, but having never had children that doesn't mean much. However I do know what "so much pain I need morphine" feels like and to me that is an 8/9 as I cannot function, and 2/3 is everyday for me. (I was going to put "normal", but read somewhere that the "normal" amount of pain is actually zero!)

It is very stark to see it in these black and white terms though. A kind friend had to explain to me that I was much lower on the scale than I had actually realised, which was a very bitter pill to swallow - among the many we are forced to.

Perhaps it would be better to have a 3 part scale; physical activity, mental activity and pain, to produce a combined score. More like a spectrum than a linear scale, given ME affects us all differently?

Would MEA be interested in such suggestions...??

 

The problem is that many assume that being 'only a bit' disabled isn't a big deal, actually it's a huge deal

 

Yes, exactly. We need some way of communicating that awful reality.

Even talking to people like our MP, who is really supportive and we have been talking to for over six years, still didn't quite understand how much I am impacted, but using this scale and explaining what 30% capacity looks like on a daily basis helped get that across.

 

It's a nice effort, but still too qualitative, with much room for varying interpretation from patient to patient.
Wouldn't it be great if there is an objective number for the score? You could then say something like, "my severity is 132. What is yours?" I suspect the disability/severity is proportional to how sensitive you are to exertion. So, the exertion-threshold for PEM could serve the purpose if we can put a measurable number to it, I think.

 

the MEA scale DISABILITY-RATING-SCALE-FEBRUARY-2020.pdf (meassociation.org.uk)
uses %disabled, rather than %capacity - so the opposite way around to AfME's scale & therefore better than it IMO.
Not that AfME's are welcoming/asking for comments, but i think they need to jump down much more if theyre going to use %capacity.

the description of what most people would see as 30% of normal capacity (which is after all more than a quar,ter) is much more than the written description would imply. I mean TBH 30% of what i could do when i was well, is loads more than even a 'mildly' affected person with ME could do without going into PEM. So where their scale says 80% it should say 50% & so on. To me its bonkers to say that a person with very severe ME can function at 10%. 10%of what a healthy active person can do, is not being confined to bed.

 

My main issue with the MEA scale is that it doesnt mentions congitive symptoms until the severe/very sever sections, which i dont think accurately reflects most people's experience.

I think @JellyBabyKid your idea is a good one of different aspects like a spectrum not just a continuum, but in meeting the needs of short doc length, i dunno. I hope you'll suggest it, they said they welcome comments

I know these scales are not ideal, but i have found them helpful in certain scenarios, like explainignto carers - i write notes in the margin to make it more accurate for myself. So eg i explain that when well rested i appear to be only 60/70%, but it doesnt last for long, because after even minor activity i end up 80-90% & 100 if i really overdo it. 'oh dear', they say, 'how do we make sure you dont over do it?'

which has obviously been a helpful way into a conversation about the help i need

 

It makes more sense to view the ability/disability in exponential/log scale, with every 10% decrease in ability meaning that you are able to do only half as much. So, you would be able to walk only 1km at 40% disability if you were able to walk 16km when you were 0% disabled, or "mobility restricted to walking up to a few hundred yards at best" at 50%, as the MEA scale states. That is the scale that I use to rate my activities/exertions.

 

It would be an awful thing to do for many reasons, but putting other conditions at their various stages onto said scale would provide anchor points/comparators that ballpark the different levels.

I agree that when I say 80% disabled it can sound like 'I'm almost disabled' rather than so debilitated that there is about enough function to be stuck bedbound, and beyond that with levels of horizontal-ness mattering there too. Which is a level few experience for more than a few months.

I wonder whether given the relatively recent paper that was associated with Bateman-Horne (but I think might have been a PhD student even, I can't fully remember) that I thought did very well at using the 'amount of time horizontal' or at least with feet up, and noting that they have incorporated that into their materials, then MEA considering that as part of the measure might be useful.

There are a few reasons behind that:

- internal - I think many who might be less ill and in early days might feel significantly better when not in PEM but find that during a crash the shocking part is how glued their head is to the pillow. But also how raising feet can be a pretty useful tool and factor to be aware of re: exertion

- external. I'm pretty sure most who don't have ME have no clue that it is so debilitating that really for most it isn't about 'measuring exercise' but that exertion for us does actually include what incline we are sitting at and where our feet are. It would also be helpful in communicating the importance of adjustments eg waiting rooms, office/employment, appointments how sitting for an hour could affect our ability to speak well.

 

They're getting a lot of feedback, there were 200+ comments on their FB post already when I added my 2c worth yesterday. Didn't manage to read many of the comments so don't know what the general reaction is

That's what the FUNCAP was developed for

 

Oh I definitely agree, but I can't see it would be of much practical use for benefit applications, workplace adjustments, or medical care. They all need it set out in detail, with examples, timelines, and (often) evidence.

I can't really think of a context where I'd use a measure like this. For a moderately affected person it isn't even useful for friends and family, as they only usually see me on better function days. I save up energy and schedule post-event recovery time so that I can have occasional periods where, apart from the need for the wheelchair, I can enjoy a bit of near-normality for two or three hours.

Most of them know it's not the reality because they've helped me out on my worst days, but there's no scale that really captures the pattern, outside of major flares, of being able to do things a couple of times a week in return for spending a good part of the rest of it preparing or recovering.

I understand the desire to come up with something easy to communicate, but my worry would be that as soon as someone with power over our lives decided to compare this kind of score to what they see, they'd find it didn't appear to match. We can't not prepare for formal encounters any more than we can't not prepare for social ones, and we get through them partly on adrenaline. I wouldn't want to have to deal with the fallout from an over-literal reading of an over-simplistic score; it seems safer to describe the complicated picture as it is and let them decide on the numbers.

 

ME Association
·

Updating the MEA Disability Rating Scale
Thanks for the huge amount of feedback on this updating
This is the new descriptor for very severe ME/CFS:
VERY SEVERE ME/CFS 100% disability
Confined to bed all day and night and incapable of living independently
Unable to stand or walk. May have episodes of temporary paralysis
Requires a great deal of supervision and practical support - which may include disability aids and equipment such as a bed hoist
Requires continual assistance with all aspects of personal care and daily living - dressing, washing, toileting and feeding
Difficulty with swallowing and eating/chewing may result in tube-feeding
Cognitive function (i.e. memory, concentration, information processing, word finding ability) may be very poor. This limits the ability to communicate and take in verbal or written information
Often has hypersensitivity to chemicals and perfumes, light, sound, movement and touch and therefore requires a low stimulus environment such as a quiet dark room
Other ME/CFS symptoms such as nausea and pain involving muscles, nerves or joints can be very prominent and persistent
Dr Charles Shepherd
Hon Medical Adviser MEA
https://meassociation.org.uk/literature/items/disability-rating-scale

 

This MEA scale is confusing
https://meassociation.org.uk/wp-content/uploads/DISABILITY-RATING-SCALE-APRIL-2024.pdf