ME severity scales - discussion

Agree that the terms need rethinking and potentially changing to reflect more accurate names to the reality. Please can I add a note on Very Severe as I feel this is probably the least known as a reality to the majority. We found the term Very Severe to really downplay and minimise the suffering at the end of the scale. We all much prefer the term Profoundly Severe and think it much more accurately reflects the reality. Most people don’t realise that Very Severe is actually the term for the most severely affected, rather believing that Severe is the term. People (within and outside of the ME community) often assume you are placing “very” in front of it as part of general conversational language( if that makes sense).

We also found that because of this, lots within the ME community itself don’t realise there is a Very Severe minority, and that they often don’t realise just how much of a leap it actually is in reality from Severe to Very Severe. For example, in a comment above it says mostly bedridden for Severe but totally bedridden for Very Severe. The Very Severe aren’t bedridden, they are bedbound and that is a huge difference. Greg Crowhurst has explained this is much better detail in the past than I can and he’s quite right. We’ve found because of these subtleties, it’s incredibly difficult for people to comprehend the end of the spectrum. We also agree that there is a huge difference between Moderate-Severe and Severe-Very Severe etc.

I think this thread shows that the current scale isn’t particularly helpful or appropriate to show the devastation ME can cause or the way in which it affects lives, regardless of where someone is on the current scale
 
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Amy101 said:
Agree that the terms need rethinking and potentially changing to reflect more accurate names to the reality. Please can I add a note on Very Severe as I feel this is probably the least known as a reality to the majority. We found the term Very Severe to really downplay and minimise the suffering at the end of the scale. We all much prefer the term Profoundly Severe and think it much more accurately reflects the reality. Most people don’t realise that Very Severe is actually the term for the most severely affected, rather believing that Severe is the term. People (within and outside of the ME community) often assume you are placing “very” in front of it as part of general conversational language( if that makes sense).

We also found that because of this, lots within the ME community itself don’t realise there is a Very Severe minority, and that they often don’t realise just how much of a leap it actually is in reality from Severe to Very Severe. For example, in a comment above it says mostly bedridden for Severe but totally bedridden for Very Severe. The Very Severe aren’t bedridden, they are bedbound and that is a huge difference. Greg Crowhurst has explained this is much better detail in the past than I can and he’s quite right. We’ve found because of these subtleties, it’s incredibly difficult for people to comprehend the end of the spectrum. We also agree that there is a huge difference between Moderate-Severe and Severe-Very Severe etc.

I think this thread shows that the current scale isn’t particularly helpful or appropriate to show the devastation ME can cause or the way in which it affects lives, regardless of where someone is on the current scale
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Thank you. That's a very helpful point. I've wondered about that too. 'Very Severe' is just a qualification of another severity level (like 'Very Moderate' or 'Very Mild').

Maybe it needs to be another word altogether? Some possibilities: extreme, critical, advanced, complex, dire. I'm leaning towards extreme, personally, so it's: Moderate(d), Significant, Severe, Extreme. Although you could have: Moderate(d), Significant, Complex, Severe instead.

Though, I must say, I do like numbering the stages (although I agree that 'stage' implies progression, which isn't always the case).
 
I hate to say it but, I think we might be stuck with Mild, Moderate and Severe (for now) because of the SNOMED codes (only applies to UK). see Dx Revision watches post here
https://www.s4me.info/threads/updat...nd-terminology-systems.3912/page-7#post-94497

which is another reason why how people are assessed and classified (preferably in some easily implemented and standardised way) needs to be carefully considered.
 
NelliePledge said:
The point is very straightforward we may have relatively mild ME but we are NOT mildly ill. We have lost 50% of our functioning.
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Yes I agree, ME/CFS is one of the worst diseases you can be hit by, in terms of the devastating effect is has on your life. If diseases were weapons, then ME/CFS would be an atomic bomb.

But that's why I don't mind the term "mild", as even a mild nuclear explosion is a major event! Perhaps though I am thinking too mathematically and logically.
 
Hip said:
Yes I agree, ME/CFS is one of the worst diseases you can be hit by, in terms of the devastating effect is has on your life. If diseases were weapons, then ME/CFS would be an atomic bomb.

But that's why I don't mind the term "mild", as even a mild nuclear explosion is a major event! Perhaps though I am thinking too mathematically and logically.
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Yes I reckon so as I don’t think most people in the public or in medicine would think extremely bad illness when they think about ME. Their knowledge is minimal at best you have personal experience and understanding. They will take the word mild on face value.
 
Are the profoundly severe unable to walk to the bathroom? There was a stage during my illness where I could only just walk to the bathroom and back to bed. I understand the tube-fed who are bedridden would be profound but just want to clear up whether being able to walk to bathroom comes under profound even though bedridden for the rest of the time.
 
Rosie said:
Are the profoundly severe unable to walk to the bathroom? There was a stage during my illness where I could only just walk to the bathroom and back to bed. I understand the tube-fed who are bedridden would be profound but just want to clear up whether being able to walk to bathroom comes under profound even though bedridden for the rest of the time.
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The Very Severe cannot walk anywhere as they are bedbound, not bedridden. They literally cannot move themselves. From not being able to weight bear, paralysis, pain, just slight movement causing PENE etc. Merryn physically couldn’t move herself, let alone get out of her bed and to the toilet right next door and then use the toilet and back.

This highlights the issues I mentioned earlier in regards to the language creating misunderstandings towards those at the severest end of ME
 
i should definitely not be posting now, but:

what if we use "level 1", "level 2", and so on, instead of either descriptive labels or stages?

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i don't think it is right to allow, for example, what @Amy101 is talking about to continue.

even if we tweak the descriptive labels [profound is better], we risk running into significant issues with public perception, habits in the community, etc.

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i did a little research into labels [years ago].

i found that we literally had...

A] those who left the house 200 times per year, did overseas travel for pleasure, and had an active out-of-the-house social life [and some of them told people who were milder that they did not have the disease, and acted as if people more severe than themselves did not exist -- our community has improved]...

... and ...

B] those who can not always make it to the bathroom, and can never leave the house without severe consequences and life-threatening consequences from a recognized comorbidity [and some of them had similar attitudes to the above parenthetical comment]...

... both of which called themselves severe.

===

the same label for vastly different levels with absolutely incomparable qol. they probably didn't think about it. there is nothing wrong with you if you are sick or not sick at any level. and you belong in the community.

i went into depth with one pwme at 100. he/she kindly complied. if your level is best described as severe, then what would you call somebody who left the house X times? [steps omitted....] ok, then what about zero times? he/she kept adding adverbs [like "unbelievably incomprehensibly [more adverbs] severe"]. he/she had to speak absurdities merely to try to create words for things that he/she had not thought about.

this was a major advocate. informed. visible. connected.

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it seems descriptive labels are wreaking havoc.

even in the community, i found that miscommunication using labels was probably more common than accurate communication. people you are talking to seem like they are at the same level as you online but can be vastly different. it is common to not really think about severities that you have not experienced. many feel alienated from the community.

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one of the first things people need to know is the wide range of severity.

although the days scale instructs you to say why it is wrong for your case [if it is], even a factor of six [which is where the exponential nature of it works] can be a better ballpark than using labels. 200 / 6 ~= 33. which means that there are people who left the house fewer times than even a factor of 6 done 2-3 times. can all the accommodation in the world help whitney leave the house 33 times even if he has to do so to survive? but the scale is not intended for all purposes.

===

if well constructed [which is a big if] maybe levels could be better than labels.

idk, just an idea. suitable for wrapping fish.
 
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Skycloud said:
@adambeyoncelowe Is discussing severity level labels,and possibly changing, a part of the NICE review?
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If it were, I couldn't tell you. Everything we discuss in meetings is confidential, I'm afraid. But as a lay member, I am encouraged to ask other patients (and carers) about the things that matter to them, and to follow discussions such as these in case they're relevant to NICE discussions.
 
I don't think this has been posted, but I've been curious about disability scales so I looked at what seems to be one commonly used with MS.

The Expanded Disability Status Scale (EDSS) is a way of measuring how much someone is affected by their MS. You might hear your neurologist talk about it or see it mentioned in reports on trials of MS drugs.

Why is your EDSS score important?

EDSS scores are used to decide which people can take part in clinical trials of many MS drugs. For example, people with scores over 6.5 haven’t in the past been able to take part in trials of disease modifying therapies (DMTs) – but this is changing in future trials. For instance, an upcoming trial called ORATORIO HAND, starting later in 2019, will be recruiting people with MS up to EDSS 8.0.

EDSS scores are also used to decide who can have disease modifying therapies (DMTs). For example, at the moment if your score is above 6.5 (that is, you use a wheelchair most of the time), then you don’t qualify to get a DMT. This is because studies in the past didn’t show these drugs had enough benefit once you were past this level of disability. But new trials are looking at this again.

Your EDSS score
Your neurologist will give you a score on the scale. It’s based on what he or she finds after examining you and asking you questions about how your MS affects you. The higher your score, the more MS is affecting you.

The score goes up by half a point with each step. But an increase of half a point or a whole point lower down the scale doesn’t represent as big an impact on your life as the same increase in the upper half of the scale. For example, going from 3 to 4 won’t be as big a change as going from 6 to 7.

Your score can change over time as the impact MS has on you changes. It usually goes up, although it can stay stable. For some people it might even go down a few points after they’ve had one of the harder-hitting DMT treatments. Most people never reach the upper end of the scale.

How is your EDSS score measured?
During an examination a neurologist will measure how MS is affecting how your body works. He or she will look at these ‘functions’:

  • muscle weakness and your ability to move your arms and legs
  • balance, coordination and tremor
  • eye movements you can’t control, your speech and swallowing
  • unusual sensations or numbness
  • your bowel and bladder
  • your eyesight
  • your thinking and memory
  • other functions
What do the points on the scale mean?
0.0 examination shows everything is normal

1.0 no disability, very small sign that one function isn’t normal

1.5 no disability, very small signs that more than one function isn’t normal

2.0 very small disability in one function

2.5 mild disability in one function or very small disability in two functions,

3.0 moderate disability in one function or mild disability in three or four functions. No problem walking

3.5 moderate disability in one function and mild or moderate disability in several other functions. No problem walking

4.0 significant disability but you can walk without an aid for 500 metres

4.5 significant disability but you’re up for much of the day. You can still work but might need some help. You can walk 300 metres without an aid

5.0 disability gets in the way of daily activities but you can walk without an aid for 200 metres

5.5 disability rules out full daily activities. You can walk 100 metres without an aid

6.0 you can walk 100 metres with a stick or crutch, with or without rests

6.5 you can walk 20 metres with the two aids (crutches or sticks) without stopping for rests

7.0 essentially restricted to a wheelchair but active all day; you can’t walk more than 5 metres even with an aid

7.5 you can only take a few steps. Restricted to wheelchair and may need help getting in and out of it. You may need a motorised wheelchair

8.0 basically you need to be in a chair, wheelchair or bed. You may be out of bed much of the day. You can use your arms

8.5 basically in bed much of the day. You still have some use of your arms

9.0 in bed all the time but you can communicate and eat/swallow

9.5 in bed but you can’t communicate or eat/swallow

10 death due to MS
​
Source

Compare the above with NICE's description of mild ME.
  • mild – you're able to carry out everyday activities, such as work, studies or housework, but with difficulty; you may need to give up hobbies or social activities so you can rest in your spare time
I would say that if somebody had MS and described their limitations in the way used for mild ME, then they'd be scored 4.5 or 5.0 on the EDSS.

TL:DR ME disability scales are rubbish - there is nothing mild about "mild ME".
 
Hip said:
Yes I agree, ME/CFS is one of the worst diseases you can be hit by, in terms of the devastating effect is has on your life. If diseases were weapons, then ME/CFS would be an atomic bomb.

But that's why I don't mind the term "mild", as even a mild nuclear explosion is a major event! Perhaps though I am thinking too mathematically and logically.
Click to expand...

Interesting. So if ME was defined as a debilitating illness with potential to devastate across across physical cognitive and sensory capacities and can cause an array of distressing symptoms on top of the debility, saying I have a mild version isn’t so bad in terms of acknowledgement. It’s when ME is defined primarily as persistent fatigue it then becomes understatement for all severities, because you’re either a bit “tired” or really really tired.
 
Andy said:
I don't think this has been posted, but I've been curious about disability scales so I looked at what seems to be one commonly used with MS.

The Expanded Disability Status Scale (EDSS) is a way of measuring how much someone is affected by their MS. You might hear your neurologist talk about it or see it mentioned in reports on trials of MS drugs.

Why is your EDSS score important?

EDSS scores are used to decide which people can take part in clinical trials of many MS drugs. For example, people with scores over 6.5 haven’t in the past been able to take part in trials of disease modifying therapies (DMTs) – but this is changing in future trials. For instance, an upcoming trial called ORATORIO HAND, starting later in 2019, will be recruiting people with MS up to EDSS 8.0.

EDSS scores are also used to decide who can have disease modifying therapies (DMTs). For example, at the moment if your score is above 6.5 (that is, you use a wheelchair most of the time), then you don’t qualify to get a DMT. This is because studies in the past didn’t show these drugs had enough benefit once you were past this level of disability. But new trials are looking at this again.

Your EDSS score
Your neurologist will give you a score on the scale. It’s based on what he or she finds after examining you and asking you questions about how your MS affects you. The higher your score, the more MS is affecting you.

The score goes up by half a point with each step. But an increase of half a point or a whole point lower down the scale doesn’t represent as big an impact on your life as the same increase in the upper half of the scale. For example, going from 3 to 4 won’t be as big a change as going from 6 to 7.

Your score can change over time as the impact MS has on you changes. It usually goes up, although it can stay stable. For some people it might even go down a few points after they’ve had one of the harder-hitting DMT treatments. Most people never reach the upper end of the scale.

How is your EDSS score measured?
During an examination a neurologist will measure how MS is affecting how your body works. He or she will look at these ‘functions’:

  • muscle weakness and your ability to move your arms and legs
  • balance, coordination and tremor
  • eye movements you can’t control, your speech and swallowing
  • unusual sensations or numbness
  • your bowel and bladder
  • your eyesight
  • your thinking and memory
  • other functions
What do the points on the scale mean?
0.0 examination shows everything is normal

1.0 no disability, very small sign that one function isn’t normal

1.5 no disability, very small signs that more than one function isn’t normal

2.0 very small disability in one function

2.5 mild disability in one function or very small disability in two functions,

3.0 moderate disability in one function or mild disability in three or four functions. No problem walking

3.5 moderate disability in one function and mild or moderate disability in several other functions. No problem walking

4.0 significant disability but you can walk without an aid for 500 metres

4.5 significant disability but you’re up for much of the day. You can still work but might need some help. You can walk 300 metres without an aid

5.0 disability gets in the way of daily activities but you can walk without an aid for 200 metres

5.5 disability rules out full daily activities. You can walk 100 metres without an aid

6.0 you can walk 100 metres with a stick or crutch, with or without rests

6.5 you can walk 20 metres with the two aids (crutches or sticks) without stopping for rests

7.0 essentially restricted to a wheelchair but active all day; you can’t walk more than 5 metres even with an aid

7.5 you can only take a few steps. Restricted to wheelchair and may need help getting in and out of it. You may need a motorised wheelchair

8.0 basically you need to be in a chair, wheelchair or bed. You may be out of bed much of the day. You can use your arms

8.5 basically in bed much of the day. You still have some use of your arms

9.0 in bed all the time but you can communicate and eat/swallow

9.5 in bed but you can’t communicate or eat/swallow

10 death due to MS
​
Source

Compare the above with NICE's description of mild ME.
  • mild – you're able to carry out everyday activities, such as work, studies or housework, but with difficulty; you may need to give up hobbies or social activities so you can rest in your spare time
I would say that if somebody had MS and described their limitations in the way used for mild ME, then they'd be scored 4.5 or 5.0 on the EDSS.

TL:DR ME disability scales are rubbish - there is nothing mild about "mild ME".
Click to expand...
A scoring system to take into account and recognise various domains would be a good idea for ME. Obviously we don’t have the objective markers used in some illness and there is quite a lot of heterogeneity,
Would ME weakness in the mild-moderate show on a drs exam? But they are asking self reports too. I would struggle to know how to set up a scoring system in our circumstances beyond rating literal functioning levels, I suppose questions could be asked on the recognise core features such as sleep OI Intolerance, cognitive issues, pain etc.

You could also have a meaningful diagnosis such as you score 4 but with particularly high pain scores or you score 8 predominantly, highly affected cognitively

I think that NICE clearly was trying to not “medicalise” our illness, symptom focus etc, the whole nhs CFS approach, without drs or nurses, the name etc it’s all stemming from the same attitude started by wessely and white as in not allowing the serious physical illness beliefs to be confirmed by the dr and become a self fulfilling prophecy for poor outcomes. The NICE criteria also with it being fatigue plus one symptom to me really is negating the fact that ME is often many symptoms. That infact would be an interesting survey on here, number how many significant bothersome symptoms beyond fatigue & post exertion fatigue do you get.
 
This post has been copied and posts discussing severity levels moved from this thread about a research paper.

I am uneasy by these researchers using the imo “off key” criteria of nice and icc, to redefine how the severities are classified. These have been at odds with the severity scales and how groups like the 25% define themselves.

I'm not suggesting there's bad intent , it was probable convenience or lack of expertise. The problem with severe ME defined as mostly bedbound, is it decreases the numbers in the severe category (harmful when the general incidence number is often inflated ie the 25% become the 5- 10% and easier to justify the marginalisation)


Afaic it's also inaccurate. Usually severe m.e is divided into upper and lower categories and I think there are thousands of people essentially not mostly, housebound who aren't mostly bedridden.

i also personally understood moderately affected to be not working but able to leave the home most days.
 
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For me, I think mild is when you can do things normally interspersed with episodes of ME which can be as bad as anything the severe experience. This fact is forgotten too often as if the disease was homogenous and not the variable entity it is. Variability of symptoms was seen as one of the critical criteria along with the abnormal response to exercise.

Moderate is when ME has to be taken into account all the time. some people manage to work while moderate by giving up everything else in life.

Severe is when you lose your independence whether you can actually get help or not. People have to give up earning for themselves or need help in the activities of daily living or can't go out without help.

We are so used to how bad ME is to live with that we underestimate it all the time. Everyone else is quite willing to accept what we say but they would be shocked if they knew what someone who is even mildly ill has to put up with on a daily basis.
 
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