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need to verify 50% = mild ME before I post this on FB

November Girl

Senior Member
Messages
328
Location
Texas
I've often read the breakdown of CFS symptoms that states that a mild case is able to perform at 50% of the person's normal activity level prior to becoming ill. Before I mention this, I need to know where it comes from.

I plan to do a series of posts for the rest of this month on FB, and ask my friends to share them. As long as I do them as a Note on my FB page, they're can be shared just by clicking on the Share box
 

November Girl

Senior Member
Messages
328
Location
Texas
not sure - but the full breakdown is something like (WELL this isn't accurate at all, but sort of like this)

Mild - can perform (at least) 50% of prior activity level (maybe the at least belongs there - would make sense)
Moderate ? mostly housebound
Severe - housebound to bedbound
very severe - bedbound
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
It depends on who's scale get's used. I think there are three major ones, Lerner, Lapp ?? and Bell's. Bells stuff is the best and easiest to use when talking to doctors and stuff. I'll see if I can dig up the links.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
IACFSME primer http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf
page 37
The Functional Capacity Scale incorporates energy rating, symptom severity, and activity level. The description after each scale number can be used to rate functional capacity
0 = No energy, severe symptoms including very poor concentration; bed ridden all day; cannot do self-care (e.g. need bed bath to be given).
1 = Severe symptoms at rest, including very poor concentration; in bed most of the day; need as-sistance with self-care activities (bathing).
2 = Severe symptoms at rest, including poor concentration; frequent rests or naps; need some assistance with limited self-care activities (can wash face at the sink) and need rest afterwards for severe post exertional fatigue.
3 = Moderate symptoms at rest, including poor concentration; need frequent rests or naps; can do independent self-care (can wash standing at the sink for a few minutes) but have severe post exertion fatigue and need rest.
4 = Moderate symptoms at rest, including some difficulty concentrating; need frequent rests throughout the day; can do independent self-care (can take a shower) and limited activities of daily living (e.g. light housework, laundry); can walk for a few minutes per day.
5 = Mild symptoms at rest with fairly good concentration for short periods (15 minutes); need a.m. and p.m. rest; can do independent self-care and moderate activities of daily living, but have slight post exertion fatigue; can walk 10-20 minutes per day.
6 = Mild or no symptoms at rest with fairly good concentration for up to 45 minutes; cannot mul-titask; need afternoon rest; can do most activities of daily living except vacuuming; can walk 20-30 minutes per day; can do volunteer work – maximum total time 4 hours per week, with flexible hours.
7 = Mild or no symptoms at rest with good concentration for up to ½ day; can do more intense activities of daily living (e.g. grocery shopping, vacuuming), but may get post exertion fatigue if ‘overdo’; can walk 30 minutes per day; can work limited hours, less than 25 hours per week; no or minimal social life.
8 = Mild intermittent symptoms with good concentration; can do full self-care, work 40 hours per week, enjoy a social life, do moderate vigorous exercise three times per week.
9 = No symptoms; very good concentration; full work and social life; can do vigorous exercise three to five times a week.
10 = No symptoms; excellent concentration; over achiever (sometimes may require less sleep than average person).

This is From Dr. Bell on Pro Health
Daily Activity Ratio

Please list the number of hours spent in each of the following categories for an average day, a ‘good’ day, and a ‘bad’ day during the past month (total for each should add to 24 hours).

Activity Average ‘Good’ ‘Bad’ Day
a. Total hours sleeping: ______ ______ ______

b. Rest but not sleeping: ______ ______ ______

c. Light activity while sitting or
lying down: (reading, TV, etc.): ______ ______ ______

d. Moderate activities in house
(light cleaning, desk work, etc.): ______ ______ ______

e. Moderate activities out of house
(work, walk, drive, shop, etc.): ______ ______ ______

f. Vigorous activities (exercise,
heavy cleaning, sports, etc.) : ______ ______ ______

TOTAL 24 hrs 24 hrs 24 hrs

How many days of the past month would you consider ‘average’? _____

How many days of the past month would you consider ‘good’? _____

How many days of the past month would you consider ‘bad’? _____

____________________

What is very interesting about this method of activity rating is the constancy of the activity of a person with CFS over months and years.

I think this constancy is more diagnostic of CFS than any description of a very bad day. Even with the ups and downs characteristic of CFS, the activity level rarely goes up to normal.

Most healthy people have 12 hours of inactivity (sum of a, b, and c) and 12 hours of activity during the average day (sum of e, f, and g). But:
• People with severe CFS have 1 to 2 hours of activity (e + f + g);

• People with moderate CFS have 4 to 6 hours of activity;

• And people with mild CFS have 9 to 10 hours of activity.​
It is important to communicate to your physician not just the presence of the symptom fatigue, but the importance of this symptom on your life. Whether "fatigue" is the right word or not, it is the effect of this symptom on your life that is important. It is this effect – the activity restriction – that seems to mess up a day.

But using the inappropriate word ‘fatigue’ may also mess up a day.

Don’t be pushy with your doctor. Do not expect that on the first visit the physician will understand CFS fatigue.

It is difficult to comprehend the complexity of this illness or any other with a single visit. But over time, the seriousness will become clear to your physician and the diagnosis understood. So lighten up, and give your doctor a break.
I'll see if I can dig up Lerner's scale it's pretty good as I recall.
 

George

waitin' fer rabbits
Messages
853
Location
South Texas
Dr. Lerner's scale is here it's not great makes to big a leap between next to dead and able to work. (grins)

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
RECOVERY
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

Anybody know any other ones?
 

Purple

Bundle of purpliness
Messages
489
This looks similar to the definition of severity from the latest International Consensus Criteria (ICC ME). Hopefully someone else can confirm this.

Mild - can perform (at least) 50% of prior activity level (maybe the at least belongs there - would make sense)
Moderate ? mostly housebound
Severe - housebound to bedbound
very severe - bedbound

It you think about it, the 50% decrease in activity due to illness to be considered mild roughly corresponds with Dr Lerner's scale above. If an average person decreases their activities by 50%, they would just about struggle with a simple job at the expense of everything else, in practical terms.
 

Gavman

Senior Member
Messages
316
Location
Sydney
What the hell, if 5 is just before recovery thats way not me. Lol. I can do things but 40 hours a week? Stuff that.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
None of the scales seem to really have a category that fits every patient. I know I don't fit into any of the above.

Sushi
 

pine108kell

Senior Member
Messages
146
These kinds of scales are not really useful for me. For example there is a huge difference for me in "lying" and "sitting down" because of orthostatic issues. "Light activity" sitting upright is very different that "light activity" in recliner.

Also, for those of us with more severe mental fatigue "reading" or even talking can be more strenuous than "light cleaning". Then there is the issue that some of us can be a "0" one day or week or month and a "3" or "4" another day or week or month. I could go on.
 

SOC

Senior Member
Messages
7,849
The problem with any fatigue/activity scale in this illness is that the illness is so much more than that. They don't really consider the pain, the OI, or the flu-like crappy feeling. The balance of mental fatigue and physical fatigue is different for everyone, so no scale seems to fit there, either.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I've often read the breakdown of CFS symptoms that states that a mild case is able to perform at 50% of the person's normal activity level prior to becoming ill. Before I mention this, I need to know where it comes from.

I plan to do a series of posts for the rest of this month on FB, and ask my friends to share them. As long as I do them as a Note on my FB page, they're can be shared just by clicking on the Share box

I'd think this 50% would come from The diagnostic criteria of Holmes et all (1988). This would be based on ME patients as that is what Holmes was seeing (ME outbreaks), thou he called the diagnostic criteria for CFS (not long after the CDC did what they did as far as lake tahoe ME outbreak went).

To be able to even get a diagnoses of CFS using the Holmes diagnostic criteria.. part of the major criteria states "1/ New onset fatigue lasting longer then 6mths with a 50% reduction in activity."

so that is the starting level for this ME/CFS diagnostic criteria so hence 50% or a bit less iis seen as a mild case. (I think there is also other CFS diagnostic criteria in which one has to be at least 50% disabled as well.. cant right now think which ones it is but if I think of the other ME/CFS definitions which use the 50% to be able to get a diagnosis.. I'll post again.

I truely wish the criteria which the original ME experts had put out had not been over shadowed by the CDC defintions. All this shows just how much CDC watered things down.

Compared to how I was before I got ill.. Im at less then 20% of my previous capicity.. before sick.. I was physically active on my feet 10 hours per day.. now I can only do 1-2 hrs per day most (in tiny broken down lots).... (but that dont fit how they often do those scales.. most of the 20% scales have a person like bedridden).
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The 1988 Holmes criteria was not accepted by we ME patients at the time and some ME literate doctors walked away in protest.

Just wanted to make that clear in case anyone gets the wrong impression.

My request for November girl would be please make clear if you go ahead if something is a CFS or a ME quote. For example your heading says ME but your posting says CFS. Try to make that clear if you do go head and post something to FB

- and thanks for considering this effort!
 

November Girl

Senior Member
Messages
328
Location
Texas
Found it! It's in the notes at the end of page 2 of the 2011 ICC.

Operational Notes: For a diagnosis of ME, symptom severity must result in a significant reduction of a
patient’s premorbid activity level. Mild (an approximate 50% reduction in pre-illness activity level),
moderate (mostly housebound), severe (mostly bedridden), or very severe (totally bedridden and need
help with basic functions). There may be marked fluctuation of symptom severity and hierarchy from
day to day or hour to hour. Consider activity, context and interactive effects. Recovery time: e.g. Regardless of a patient’s recovery time from reading for ½ hour, it will take much longer to recover
from grocery shopping for ½ hour and even longer if repeated the next day – if able. Those who rest
before an activity or have adjusted their activity level to their limited energy may have shorter
recovery periods than those who do not pace their activities adequately. Impact: e.g. An outstanding
athlete could have a 50% reduction in his/her pre-illness activity level and is still more active than a
sedentary person.​

ukx - I'm switching over to using ME, but sometimes the CFS slips in. By way of explanation, I was initially diagnosed over 20 years ago as having CFS, but have more than met the criteria for every definition of ME or CFS I've read. When writing outside the ME/CFS community, I usually use the term ME/CFS because most people in the US have never even heard of ME. If I speak of ME, they hear MS, so I usually say Myalgic Encephalomyelitis, which opens a dialog. I realize that the CDC's coming up with Chronic Fatigue Syndrome was an act of intellectual laziness that has had devastating consequences. But for decades, many of us considered our disease to be named CFS. We may have detested the term, but that's all we had.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
None of the scales seems that accurate to me. I agree that a 50% reduction doesnt appear to me to be mild. Of course you would need to qualify what you mean by a reduction of 50% and 'mild'. I quite like the Bell scale that Dr Myhill uses

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.

http://drmyhill.co.uk/wiki/CFS_Ability_Scale_-_a_rough_measure_of_how_disabled_you_are

On this scale i started at 20% when i relapsed 4 years ago and how now recovered to 40% (most days) I still have the ability to have days at 30% and others at maybe 60%.

These scales dont reflect the fluctuation of the illness. I worry that using the 50% level as discussed above will lead to those with mild M.E being dismissed, or those who recover above this level being told they are well when they are clearly not.
All the best. Justy.
 

garcia

Aristocrat Extraordinaire
Messages
976
Location
UK
I would kill to have a mere 50% reduction in activity. You could live a pretty normal life with 50% of the energy of a healthy person. I would definitely consider 50% and above mild.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
How do we know what a healthy persons energy levels are like. What does 50% correlate to? The problem is that if you come down with M.E and you are an elite athlete you may well be able to function at a higher level than someone who was sedentary when they became ill. It is relative and subjective - that is the problem with the scales.
Having siad i like the above Bell scale i now see that when i am housebound at 40% i am still described as having 50-70% of the energy of a healthy person. But on the other hand you could have a mild case andbe at 80% but still have M.E and be symptomatic.
 

Sparrow

Senior Member
Messages
691
Location
Canada
I run into problems with the Bell scale where it gets to "Overall activity 30-50% of expected." at a 20/100. The rest of that level sounds much like me, but no way am I doing 30-50% of what I normally would. How could I, if I can't leave the house, am bed bound all day, and only get about an hour of mental activity? That sentence has always confused me.