The Mild, Moderate, Severe and Very Severe Levels of ME/CFS

Hip

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Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) can vary greatly in its severity: mild is the starting point, next comes moderate, then severe. And for extreme cases, there is the very severe category.

These levels of severity are most easily understood in terms of what activities you are able to perform:
● Those with mild ME/CFS may be working full or part time, but struggle to do so. Of necessity they may have stopped or curtailed all leisure and social pursuits.

● Those with moderate ME/CFS are generally not able to work, probably don't leave the house much, have to perform domestic chores slowly with breaks and rests, and may need 1 or 2 hour's naps in the middle of day.

● Those with severe ME/CFS are more-or-less fully housebound, and likely bedbound (or lying horizontal on a sofa) for much of the day. They are unable to leave the house except on rare occasions, and usually dependent on a wheelchair for mobility, except for very short walks within the home or garden. They find domestic chores like cooking or any form of housework very difficult or impossible.

● Those with very severe ME/CFS will bedbound nearly 24 hours day, except for a few minutes each day to go to the bathroom. Dependent on help for all daily care. Often unable to tolerate any noise, and are generally extremely sensitive to light.


The above descriptions of the mild, moderate, severe and very severe levels of ME/CFS are my own synthesis, derived the following sources which describe these severity levels:
International Consensus Criteria

Mild — an approximate 50% reduction in pre-illness activity level
Moderate — mostly housebound
Severe — mostly bedridden
Very severe — totally bedridden and need help with basic functions
NICE guidelines (similar to the CFS/ME Working Group's 2002 Report, page 27)

People with mild ME/CFS are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week

People with moderate ME/CFS have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for 1 or 2 hours. Their sleep at night is generally poor quality and disturbed.

People with severe ME/CFS are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.
NHS Encyclopaedia: Chronic fatigue syndrome

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe or very severe symptoms. These are defined as follows:

Mild – you are able to care for yourself, but may need days off work to rest.

Moderate – you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and sleep in the afternoon.

Severe – you are able to carry out minimal daily tasks, such as brushing your teeth, but occasionally you may need to use a wheelchair. You may also have difficulty concentrating.
patient.info

Mild: the patient is mobile, can care for themself and do light housework with difficulty.

Moderate: the patient has reduced mobility and is restricted in all activities of daily living. They have usually stopped work or education. There is poor sleep quality and duration.

Severe: the patient is unable to do anything for themself. They suffer severe cognitive difficulties and depend on a wheelchair. They spend most of their time in bed and are sensitive to light and noise.
www.betterhealth.vic.gov.au

Mild – the person’s activity is reduced by at least 50 per cent.
Moderate – the person is mostly housebound.
Very severe – the person is bed-bound and dependent on help for all daily care.

Around 25 per cent of people with ME/CFS will have a mild form and be able to get to school or work either part-time or full-time, while reducing other activities. About 50 per cent will have a moderate to severe form and not be able to get to school or work. Another 25 per cent will experience severe ME and be housebound or bedbound.


If we take the full ME/CFS scale:

Very SevereSevereModerateMildRemission

then any time an ME/CFS patient is able, as a result of treatment, to move up 1 level on this scale (eg, move from severe to moderate, or move from mild to remission), that can be classed a major improvement.



It is interesting to try to map these mild, moderate, severe and very levels of ME/CFS onto the Karnofsky Scale, which is a general scale used to measure the severity of illness.

In my own interpretation, on the Karnofsky Scale from 0 to 100, I would say that:
Perfect health = 100
Mild ME/CFS = 80 to 90
Moderate ME/CFS = 60 to 70
Severe ME/CFS = 40 to 50
Very severe ME/CFS = 20 to 30
Here is the Karnofsky Scale for ease of reference:
The Karnofsky Scale

100— Able to work. Normal; No complaints; No evidence of disease.

90 — Able to work. Able to carry on normal activity; Minor symptoms.
80 — Able to work. Normal activity with effort; Some symptoms.


70 — Independent; not able to work. Cares for self; Unable to carry on normal activity.
60 — Disabled; dependent. Requires occasional assistance; cares for most needs.


50 — Moderately disabled; dependent. Requires considerable assistance and frequent care.
40 — Severely disabled; dependent. Requires special care and assistance.


30 — Severely disabled. Hospitalized, death not imminent.
20 — Very sick. Active supportive treatment needed.


10 — Moribund. Fatal processes are rapidly progressing.
Thus with the above interpretation, a 20 point increase and improvement on the Karnofsky Scale corresponds to moving up one level, eg, from severe to moderate ME/CFS, or from moderate to mild ME/CFS.



To see other ME/CFS scales that I have attempted to map onto the mild, moderate, severe and very severe levels, click on these buttons:

On Dr Marin Lerner's Energy Index Point Score scale, the mild, moderate, severe and very severe levels map out to the following, in my own interpretation:
Energy Index Point Score Scale

0 — Bed-ridden, up to bathroom only.

1 — Out of bed 30 - 60 minutes a day (sitting in chair is out of bed).
2 — Out of bed sitting, standing, walking 1 - 2 hours per day.
3 — Out of bed sitting, standing, walking 2 - 4 hours per day.


4 — Out of bed sitting, standing, walking 4 - 6 hours per day.

5 — Perform with difficulty sedentary job 40 hours a week, daily naps.
6 — Daily naps in bed, may maintain a 40 hour sedentary work week plus light, limited housekeeping and/or social activities.
7 — No naps in bed. Up 7:00 a.m. to 9:00p.m. Able to work a sedentary job plus light housekeeping.
8 — Full sedentary workweek, no naps, some social activities plus light exercise.


9 — Same as 8 above plus exercise approximately 1/2 to 2/3 normal without excessive fatigue, awakens next morning refreshed.
10 — Normal

On Dr David Bell's CFIDS Disability Scale, the mild, moderate, severe and very severe levels map out to the following, in my own interpretation:
100 — No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90 — No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.



80 — Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70 — Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60 — Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.



50 — Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40 — Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30 — Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.



20 — Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10 — Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.



0 — Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.



Further reading:
Mild, Moderate, Severe and Very Severe PVFS / CFS / ME in Patients’ Own Words
 
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Mary

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@Hip, thanks for doing this. However, I have trouble with the Karnofsky scale. I would be labeled 60 to 70 on its scale; I care for myself with no outside help. However, I could certainly use outside help. I have to save up energy to do things like grocery shopping, and then often spend a day in bed afterwards. My house is never really clean. I can do very little housework. So yes, I'm independent but I'm not at 60% or 70% of functioning by any means. A more accurate number would be maybe 25%. So I don't think the Karnofsky scale gives a true picture of ME/CFS functioning.

On the Lerner scale I would be a 3.

On David Bell's scale I would be a 30, but even that that doesn't work because it says functioning is 50%. Well, when I was well, I could easily do a brisk 1-hour walk before work, get ready for work, work 8 hours (desk job) plus walk more on my lunch, and then after work do more things. Today I couldn't manage one of those walks - it would leave me crashed the next day. My functioning isn't even close to 50%.

It just seems difficult to quantify functioning for ME/CFS.
 

Hip

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Yes, the Karnofsky scale doesn't work all that well when applied to ME/CFS (it is a general scale, not specifically designed for ME/CFS).

I don't find the David Bell that easy to follow either. It refers to activity levels reduced by certain percentages, but I find that hard to relate to (ie, what exactly is a 50% reduction in activity?). The Martin Lerner scale is a bit more straightforward to understand.

There are other ME/CFS scales also, such as Jodi Bassett's ME Ability and Severity Scale, which is the only one that has separate scales for physical ability and cognitive ability (but with my lack of cognitive ability, I find that confusing!). And there's the ME Disability Scale of Dr Charles Shepard.


I find the simple mild, moderate, severe scale the easiest to relate to.
 

Moof

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Thanks for this, this looks good. Trying to be too precise almost always presents more difficulty than broader categories plus a simple modifier if required (i.e., 'mostly moderate, occasionally severe' or 'moderate or moderate+').

@Mary, I think it's best to classify yourself by what you need, not what you receive. I'm in the same boat – I could do with a lot more help than I get, but I also find it difficult to cope with actually having it. I used to have a couple clean my house and do a bit of gardening once a fortnight, but even though they were lovely people, it was so tiring that I usually dreaded them coming. Since they retired, I just keep swinging between whether it's easier to have the help, or easier not to!
 

medfeb

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@Hip - your descriptions of mild, moderate, severe, and very severe are great.

A question on the descriptions - are people with severe ME always dependent on a wheelchair for mobility? I could imagine someone who is severe, pretty much homebound and largely laying flat all day - their mobility is limited to getting food and going to the bathroom in which case they may do that without a wheel chair.

On the scales that you posted - after looking through these scales, do you have a preference for which one is the best in terms of sensitivity and range of severity covered?
 

Hip

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AA question on the descriptions - are people with severe ME always dependent on a wheelchair for mobility? I could imagine someone who is severe, pretty much homebound and largely laying flat all day - their mobility is limited to getting food and going to the bathroom in which case they may do that without a wheel chair.
Good point, I've changed the description slightly to make it clearer.



On the scales that you posted - after looking through these scales, do you have a preference for which one is the best in terms of sensitivity and range of severity covered?
Myself I prefer the severe, moderate, mild, remission scale, just because each level on this scale very clearly depicts the different illness severities and the corresponding "lifestyles" that ME/CFS patients usually fall into.

These "lifestyles" are each quite distinct and recognizable: if you are a mild patient going out to work each day (but coming home exhausted), that's quite a different way of life to the moderate patient, who cannot work and is not able to leave the home much. And that in turn is quite different way of life to the severe patient who, is so frail that he or she is confined to bed for much of the day.

So I find this scale easy to relate to: the levels are easy to understand, and most patients can readily identify where the lie on this scale.


Perhaps after that, I find the Lerner Energy Index Point Score scale detailed above quite good, but not as easy to relate to.


Whenever I read a patient's story on the ME/CFS forums of some treatment X that resulted in "great improvements" in their health, because such descriptions don't really mean much, I usually ask them to quantify their improvement on the severe, moderate, mild, remission scale. I ask them where they were on the scale before treatment, and where they moved up to as a result of the treatment. And most people are readily able to quantify their gains in health, once they see the severe, moderate, mild, remission scale.

Sometimes a treatment might not quite move the patient up a 1 full level on this scale, and but it might perhaps move them for example from the bottom end of moderate to the top end of moderate. More rarely, you read accounts of treatments moving patients up 1, 2 and even 3 levels on this scale. Then you know that the treatment was pretty effective. Any treatment that can move you up even just 1 level on this scale will make a very noticeable difference, because it amounts to a complete change in illness "lifestyle".
 
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Moof

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A question on the descriptions - are people with severe ME always dependent on a wheelchair for mobility?
I think this varies quite a bit – I've never had severe ME, but I've needed a powered wheelchair outdoors for 18 years. I worked full-time from developing ME in the 1970s until 2013; the wheelchair was a key part of enabling me to carry on for as long as I did, and it's really important in maintaining my independence and having a good quality of life now. I have to use a wheelie indoors sometimes as well, as I'm prone to falling because of low blood pressure.

I know a couple of people who're similarly moderately affected who use them, too. What we seem to have in common is severe autonomic dysfunction (I used to pass out in shop queues after standing for just a couple of minutes!) and high levels of pain after minor activity. On the other hand, I had a colleague whose partner's ME was more severe than mine; she could only dream of being able to work, but she had better mobility because she never passed out or fell over. I guess it just depends on which symptoms predominate.
 
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I always hate this becuase I have hold a job while mild, moderate, severe!!!
I work computers so I can work remote. I can work from bed!!! Yet that is not a measurement. So it has driven me to say I am a 7 when I was really a 3.

Now “mild” cFs here is the problem. My wall is the wall so let’s say I have commitment during the bad period. When I am crashed I am crashed. Live does not work on beautiful boxes where I can say everybody hold. Let me sleep for4h then I keep going.
So when I am cfsy I have 0 energy for however long I have no energy.
When I am ok to do some stuff then is ok.
No people’s expectation of me is always to my highest energy point.
So for me sometimes would’ve easier to have like a set energy available than variable ( I am more relapsing remitting type).
I was a whole month like a normal person. Did not crash last month, walk on theme park, work to office full time...

Then I was late on my period and got it.
Crashed ( I think hormonal) and I am lucky to be able to show up at work. How do I explain that?!!!
 

Hip

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Crashed ( I think hormonal) and I am lucky to be able to show up at work. How do I explain that?!!!
ME/CFS symptoms naturally will become worse during a period of post-exertional malaise (PEM), or crashes as these are sometimes called. But when assessing your level of ME/CFS, this is done when you are on an even keel, not when you are suffering from PEM and thus feeling much worse than normal.

During a significant PEM period, patients might potentially go down a whole level on the very severe, severe, moderate, mild scale, in relation to their normal location on the scale.
 
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ME/CFS symptoms naturally will become worse during a period of post-exertional malaise (PEM), or crashes as these are sometimes called. But when assessing your level of ME/CFS, this is done when you are on an even keel, not when you are suffering from PEM and thus feeling much worse than normal.

During a significant PEM period, patients might potentially go down a whole level on the very severe, severe, moderate, mild scale, in relation to their normal location on the scale.
I understand that. But my issue is my employment and the commitments.
So I cannot get disability because I am not totally disable. But another employment will not want me becuase nobody hires a person that shows up whenever they want/can. family obligations are tricky becuase I feel ok, we plan around that and stopped paying a service to get my kid to school but then I am out, then what? Is as if I am this unaccaountable person that might or not might show up. But not crashed, I am ok one day, not the next. Today I am for example full blown IBS. I cannot get away from toilet ( as I type :)) and I am needed in meetings and crap at work :( so I mute te phone, participate then mute again!!!!
It is a circus my live!!!!
 

CreativeB

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Hi @lnester7, I can understand why you feel as you do. It's difficult trying to work with this. Sometimes we push ourselves too hard and make our condition worse. I think it's difficult to manage working with me/cfs.
 
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Ahhh I also forgot to say. Sometimes energy is independent of how bad I feel.
So sometimes I have little energy but if I do not move I feel great and normal.
Vs other days I can move but feel like I want to die of sick ( inflamed brain, tingling) muscle pain.... and weather I move or not I am misserably sick ( like today with the IBS). So that is another factor of well-being that is independent of level of energy / activity.
 

Runner5

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I think it's a good scale because it will help people communicate about the illness and also for outsiders to (possibly) understand how serious and how completely life-shattering this can be to live through.

@Inester7 -- ((hugs)) -- That's a difficult position you're in. You're tremendous.
 

Learner1

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I find all of these scales confusing. The descriptions don't fit me.

My own description is that 2 years ago, I functioned at about 40% of normal and now I'm at about 80%, but with a lot of treatment to be at this level.

If you were to force me to pick, I'd say I was between moderate and severe and now I'm between mild and moderate, or mild, or moderate depending on the descriptions in each scale. Its a head scratcher.:wide-eyed:

But, I will say that the treatments I've done in the past 2 years have been gradually helping me improve. Before that, I spent a year and a half getting worse, going from none to moderate to severe.

To track my progress, I think the markers are:
  1. Total hours of sleep in 24 hours
  2. Number/hours of naps per day
  3. Ability to sleep through the night with quality sleep
  4. Ability to read an article or focus on a TV program or a tedious task at work
  5. Ability to write a business letter for report or help a child with homework
  6. Ability to plan and execute a multi step task.
  7. Ability to stand in a grocery line or talking to someone without passing out
  8. Hours of work per week
  9. Hours of treatment per week
  10. Ability to walk and distance walking, or confined to a wheelchair
  11. Minutes of non-aerobic exercise per week
  12. Minutes of aerobic exercise per week
  13. Ability to exercise without multiple naps during the session
  14. Hours of PEM per week
  15. Ability to drive and do errands
  16. Ability to sit through a meal
  17. Hours of social activity with family
  18. Hours of social activity with others
  19. Ability to cook, do laundry, vacuum, take out trash, mow lawn, etc.
  20. Ability to take a vacation normally, without compromises