ME severity scales - discussion

Thats a great explanation @Mithriel, and has also been my experience.

 

I can’t agree fully . I’m very severe now and had mild 2 years at the start, what you can experience as a mild severe flare, or atleast I did, isnt the same if you’re saying as bad as what the severe can experience. I get really bad vision and speech, sensory loss, loss of hearing even, numbness, compete cognitive loss to bring a level of confusion etc, I didn’t experience that as mild, I just felt really ill when I over did it ....imo, the neurological side wasn’t as anywhere near as clear as now. Likewise the pain I know some very severe get, is off the scales, I can’t imagine the mild experiencing it same in flare .

The mild can be very ill in bed but I don’t think you can say it’s the same just less frequent.
I do take the point I think you make that mild or moderate can dip into severe type levels with the weakness, sensitivity, illness so it’s not clear compartmentalised. So in that way it’s a scale and I disagree with some like AFME who tend to suggest severe ME is potentially as separate illness.

I personally thought moderate was functional but unable to work.

 

I know a lot of people with MS and even the ones who can't work are only limited in the way people with mild ME are. The difference is they are allowed to be disabled. Conversely, some people with ME are forced to work with bad disease because they can't get benefits because of the lack of medical support. So work status is not a good criterion.

This disease affects us all differently. When I was mild, still attending school, I did so while getting frequent episodes of vision loss and speech loss as well as bad pain, vertigo, paralysis and cognitive confusion.

Later, I became much worse but I had 3 kids so I had little choice but to do things. I crawled across the floor to hold my son's bottle in his mouth while he sat in a baby bouncer many a time (I was not diagnosed at the time and little was known about ME. I had been told I had migraine with paralysis and then abandoned by the medical system. I'd also lost any idea of what was normal by that stage) I've dragged myself along hanging on railings collecting the kids from school.

Much older now, with no dependants, I can't do the activities of daily living for myself but I do not have to push myself the way I did then.

It may be different now, I have been ill for 52 years since I was 14. A diagnosis of even CFS and a quick google search lets you know that rest is important or allowed even but becoming ill as a child I had always been told I would realise how hard life was when you grow up so I assumed everyone found it as hard as me but they did not complain about it.

 

Actually, I have been thinking about this and maybe I was actually moderate when I think I was mild! I have never had a job but I tried holiday work and only managed a few weeks before I crashed badly.

The biggest problem with categorising ME is that it is so much worse than anyone acknowledges. People with MS know they have a terrible disease, in fact after diagnosis they have to be reassured that it is often much milder than they think. I'm not comparing the diseases, just the perceptions.

 

I disagree with this; this is part of the criteria for 'mild' ME.
I would say that those who are moderate are just about able to care for themselves but can struggle; anything on top of that is a bonus.

 

Then we have to factor in management.

When I was moderately affected & in the first few years was pain levels were ridiculous, but I was more functional.

Now, as a severe patient, I am simply unable to function at previous levels regardless of how well I manage my condition, but my pain levels are much, much better with good management.

It's so much more complicated defining severity levels than in other conditions where there might be biomarkers or blood tests or whatever.

 

it struck me when reading the 'frailty' scale for assessing elderly patients that the 'mild', 'moderate' and 'severe' frailty descriptions seem very similar to the NHS mild, moderate and severe CFS/ME ranges. I think this shows how using these terminologies (mild, moderate, severe) to describe a condition that severely limits the daily lives of all age groups (supposedly 50% just to have 'mild CFS/ME') - including children - is wholly inappropriate.

When you talk about having 'mild ME' most of the public would assume you have a mild illness, not something comparable to old age frailty. It certainly isn't taken to mean you have an illness that restricts you more than having early stage MS (for example).

https://www.bgs.org.uk/sites/default/files/content/attachment/2018-07-05/rockwood_cfs.pdf

 

This is interesting:

From here: https://www.medicalnewstoday.com/articles/324328#categorizing-ms-

 

I get a slightly different set of definitions from the ICC document here: http://www.investinme.org/Documents/Guidelines/Myalgic Encephalomyelitis International Consensus Primer -2012-11-26.pdf

4. Symptom severity & impact:
....Mild: meet criteria and have a significant reduction in activity level;
....Moderate: approximately 50% reduction in pre-illness activity level;
....Severe: mostly housebound;
....Very Severe: mostly bedbound and require assistance with daily functions.
....Those who are very severely affected are too ill to attend regular medical appointments.

 

I think this is probably because some at the milder end may not quite have a 50% reduction in pre-morbid function while evidently being far from healthy.

For example, if you're asthmatic, you might have low levels of physical activity anyway (the same with any co-morbidity). Adding ME into the mix might make you only a little more functionally impaired, comparatively, but you're still significantly impaired compared to a healthy person.

I suspect, too, that there are people for whom the reduction in function is maybe borderline (20-30%) who nevertheless have properly defined PEM and other symptoms highly suggestive of ME.

 

@Jonathan Edwards - Is there any kind of standardisation across different diseases in terms of what gets classed as 'mild', 'moderate' and 'severe'?

The ME/CFS scales seem to be so out of whack.

 

I don't think so. I don't think severity scales are of much use to doctors. Each patient has a host of different problems and you do your best to deal with them as they are. Rheumatoid has four grades. I think grade four is wheelchair bound but I never used them.

Grades may be useful for research but as for diagnostic criteria it is a mistake to confuse things useful for research with things useful for care.

I am not sure what S4ME can usefully say to be honest.

 

I just had a quick flick read of a couple of posts at the beginning of this thread about 'profound ME' where the very severe cannot get out of bed to go to the toilet. They are bedbound.

I had two years of ME where I would call myself very severe. I do wonder whether we should have another name for tube-fed and bedbound ME because I do think there is a very severe ME where patients can get to the toilet but are very severe.

Just a thought, worth thinking about now or for future discussion?

 

My 2 cents. There is too big a gap between "mild", defined as being able to hold full time job but not much else, and "moderate" defined as being able to go out of the house a few times a week. I consider myself "recovered", but I can't imagine holding a full-time job yet. Working on a project at the desk for a few hours put enough downward pressure on my condition next day. I think the best way to define severity/disability is the number of hours you spend lying down, with 0-1 being healthy and severe being 12-15. Age adjusted, of course. Number of hours spent lying down tracks closely to how badly I feel in my experience.

 

The thing is that most people (including clinicians) only really 'know' the mild end of ME severity and as any description of ME invariably fluffs over the definition of 'moderate' patients (eg "usually needing to sleep for a couple of hours in the afternoon" used to be a regular on definitions of 'moderate' ME patients).
So if as a 'moderate' ME patient you get to see a medical professional they will automatically think of you as those who are classified as mild. They rarely understand any of the difficulties you may have in day to day living, nor the effort involved in attending an appointment, or having to go to a hospital appointment or indeed anything.

If you are severe , bedbound and reliant on carers it is more obvious and you are not likely to be regarded in the the same way as those who are 'mild'.
It is less obvious for pwME who are moderate, and as I keep banging on about , there is very little, if anything, in the literature about people who come between mild and severe, even though they are the majority of pwME.

So at present the only thing we have are the various 'severity scales' which are all so ** useless.

Why are the majority of pwME rarely mentioned? | Science for ME

 

Absolutely.

1)
Unfit for any kind of work: tick.
Unable to stand for more than a minute: tick.
Always need a wheelchair outdoors, and sometimes indoors: tick.

So I'm severely affected.


2)
Live without support: tick.
Able to go out socially & follow interests: tick.
Never restricted to supine position: tick.

So I'm mildly affected.


Single measures are never going to work for complex impairments that (a) can vary by the hour, never mind the day and (b) everything is contingent upon everything else.

 

I wish instead of mild (which isn’t mild at all) moderate and severe we would use stages, stage 1 to 5 or 6 and maybe use the scales of Whitney, with some slight adaptations.

 

Mild ME is brutal in comparison to many things people think about. Sub-clinical ME might fulfil a mild category, but keep in mind that in many discussions mild means a loss of more than half of functional capacity. Losing half a life is not mild in any reasonable standard.

 

I think it would be more helpful to use FUNCAP scores. They take into account that some people have more severe impairments in one domain than it others.