Collecting data from users

[Dr.Patient]

Re many/most activities, we may be able to do some but not all on a given day or in a given week. So maybe we can do an hour's light cleaning but then not be able to prepare our meals or have a shower. Or be able to walk the dog but then not be able to do any gardening or shopping. Get ourselves dressed but then not be able to walk downstairs. Etc. This needs to be taken into account.

All these would place a patient at level 20 of the Bells score.

 

[Dr.Patient]

PR Scale: 3-3.5 (10)
Karnofsky: 55 (100)
Bell: 20-50 (100)
Lerner: 2-4 (10)
ECOG: 2 (5)
PPS: 55 (100)

My problem with Bell's scale is that the descriptions at each level are internally contradictory. I'm doing about 30% of "normal" activity, but I'm certainly not bedbound or moderately symptomatic at rest. How does a bedbound person do 30% of normal activity anyhow? I'd expect that to be about 5-10%.

Lerner's scale is too vague - there is a HUGE difference between 4 hours of sitting and 4 hours of walking, but it seems to be all added together. I can sit all day, but can't stand or walk more than about an hour per day (for a couple minutes at a time, with plenty of rest between). And I'm certainly not one step below being able to work full time.

Karnofsky and PPS are okay, but too general to easily apply to ME/CFS, and without enough gradation between levels of disability due to having too many levels at the mild end. ECOG lacks sufficient distinction between levels, having only 5.

PR scale is my favorite of the bunch - it's relevant to fluctuating ME symptoms, it's clear and concise, it has consistent gaps between the levels, and it doesn't become self-contradictory by including too many different indicators of activity levels. It also covers the full range in an adequate and balanced manner - some of the other scales are too heavily tipped toward either the "dead" or "completely healthy" end, and don't adequately describe the continuum at the other end of the scale.

If you are not bedridden, and you are homebound, you are at level 30 of Bells score.

 

[Dr.Patient]

If you are not bedridden, and you are homebound, you are at level 30 of Bells score.

The percentages of work that people can do, 30%, 50%, 70%, etc are vague and should be removed from Bells score.

 

[Sushi]

Posture makes all the difference for me. For instance, I can be "active" for about 8 hours a day, but a lot of that time has to be spent reclining

using a computer, reading, etc. I can easily "get upright" for a few hours at a time if I am reclining the rest of the time. I can also do a fairly strenuous pilates class for an hour, but it is done lying down and wearing an HR monitor. No way I could do upright aerobic activity for that long.

Driving is another interesting thing. For me it is limited by cognitive and eye function--which, for me go together. On a good cognitive day, I can drive for a couple of hours. On a bad day...well I don't even think about it. So, since for me going out, means driving, the number of times a week is not limited by energy per se, but by ability to concentrate well enough to drive.

Sushi

 

[Dr.Patient]

Posture makes all the difference for me. For instance, I can be "active" for about 8 hours a day, but a lot of that time has to be spent reclining

using a computer, reading, etc. I can easily "get upright" for a few hours at a time if I am reclining the rest of the time. I can also do a fairly strenuous pilates class for an hour, but it is done lying down and wearing an HR monitor. No way I could do upright aerobic activity for that long.

Driving is another interesting thing. For me it is limited by cognitive and eye function--which, for me go together. On a good cognitive day, I can drive for a couple of hours. On a bad day...well I don't even think about it. So, since for me going out, means driving, the number of times a week is not limited by energy per se, but by ability to concentrate well enough to drive.

Sushi

Yours is probably 60 on Bells?

 

[Leopardtail]

Posture makes all the difference for me. For instance, I can be "active" for about 8 hours a day, but a lot of that time has to be spent reclining

using a computer, reading, etc. I can easily "get upright" for a few hours at a time if I am reclining the rest of the time. I can also do a fairly strenuous pilates class for an hour, but it is done lying down and wearing an HR monitor. No way I could do upright aerobic activity for that long.

Driving is another interesting thing. For me it is limited by cognitive and eye function--which, for me go together. On a good cognitive day, I can drive for a couple of hours. On a bad day...well I don't even think about it. So, since for me going out, means driving, the number of times a week is not limited by energy per se, but by ability to concentrate well enough to drive.

Sushi

That leads into the OI metric suggested earlier doesn't it? What you can do laying, vs sitting, vs standing? That seems to be emerging as a 'core metric' of ability.

 

[Sushi]

@Dr.Patient

Nope, I don't fit the Bell scale at all.

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.

My overall functioning is nowhere near 70 - 90% and there is no way I could work full time at anything. The 8 hours of activity includes basic self care--hygiene, cooking, eating, shopping, housework, personal email and other communication and everything else that someone would do "outside of a job."

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.

And 50 doesn't work for me either: I don't usually have moderate symptoms at rest, I can do an hour of strenuous, mainly anaerbic exercise, once a week (while lying down) with no symptoms, but very little aerobic activity or standing activity, my activity level is less than 70% of "normal," put me in the New Mexico sun for 5 minutes and I'll be very sick (heat intolerance), I don't require "rest or sleep periods during the day (other than some time lying down and reading or watching TV)," but do need to be reclining most of the day.

I don't fit any level of the Bell scale.

Sushi

 

[Leopardtail]

@Dr.Patient

Nope, I don't fit the Bell scale at all.



My overall functioning is nowhere near 70 - 90% and there is no way I could work full time at anything. The 8 hours of activity includes basic self care--hygiene, cooking, eating, shopping, housework, personal email and other communication and everything else that someone would do "outside of a job."



And 50 doesn't work for me either: I don't usually have moderate symptoms at rest, I can do an hour of strenuous, mainly anaerbic exercise, once a week (while lying down) with no symptoms, but very little aerobic activity or standing activity, my activity level is less than 70% of "normal," put me in the New Mexico sun for 5 minutes and I'll be very sick (heat intolerance), I don't require "rest or sleep periods during the day (other than some time lying down and reading or watching TV)," but do need to be reclining most of the day.

I don't fit any level of the Bell scale.

Sushi

from what I can see Bells has:

• nice clear descriptions (very good point)
• covers a few 'functional areas (good point)
• because it covers multiple areas will never be a perfect match for anyone (bad point)
• the percentage ability is way too high, or we aren't understanding it (very bad either way)
• perhaps needs to be split into several separate metrics / questions.

Should we be shifting focus back to the positive here: what can we learn from each scale? what do we need to improve upon?
what are we going to measure to determine which meds/supplements are effective?

 

[Leopardtail]

does everyone here have access to microsoft Excel?

 

[Leopardtail]

@Sushi and @Valentijn both raised points about Orthostatic Intolerance, it's severity and how it affects functions
Would if be useful to 'join minds' and come up with some useful measures of severity and/or functional effect.

E.g. I can read when lying down for much longer in most states of fatigue (head up)
with very severe fatigue I must lift a book over my head so the head is 100% flat...

They are two examples of OI severity.

What examples could you all give that are more, or less severe from you own lives?

 

[Dr.Patient]

Here's the thing- if you can do an activity, you should be able to do that CONSISTENTLY - meaning at least 8 hrs a day, 5 days a week. If you cannot do it consistently, you drop down on the levels. The % of activity levels on Bells should be removed. If you do that, @Sushi your score will be 60, but if you need to be reclining most of the day, you are at 50. Patients' data needs to be 'synthesized' to arrive at a certain level.

 

[Dr.Patient]

@Sushi and @Valentijn both raised points about Orthostatic Intolerance, it's severity and how it affects functions
Would if be useful to 'join minds' and come up with some useful measures of severity and/or functional effect.

E.g. I can read when lying down for much longer in most states of fatigue (head up)
with very severe fatigue I must lift a book over my head so the head is 100% flat...

They are two examples of OI severity.

What examples could you all give that are more, or less severe from you own lives?

I don't think it's possible to quantify each and every symptom. The word "Symptoms" includes anything that affects you, and scale that accordingly to mild, moderate, severe, profound, and also whether at rest or with minimal, moderate or severe exertion, and incorporate them into the Bells score.

 

[Valentijn]

If you are not bedridden, and you are homebound, you are at level 30 of Bells score.

But in your previous post you described someone with the same level of around-the-house functioning as me as a 20 It don't work!

 

[optimist]

does everyone here have access to microsoft Excel?

I'm 100% Linux So, LibreOffice with me. But, it can handle most Excel features pretty well.

 

[Leopardtail]

I don't think it's possible to quantify each and every symptom. The word "Symptoms" includes anything that affects you, and scale that accordingly to mild, moderate, severe, profound, and also whether at rest or with minimal, moderate or severe exertion, and incorporate them into the Bells score.

nor do I, it's more a matter a doing it for the ones that are 'core indicators' and more 'creating a spectrum' than quantifying.

The purpose of those 'core indicators' will be to identify distinct groups of patients they will need more concrete recording:
e.g.
is pain @flu or @firbo like end of the spectrum
level of cognitive dysfunction / concentration
level of physical endurance.
degree of PEM
OI

Where as 'secondary symptoms' are everything else that just need recording
e.g. alcohol intolerance, eye strain, etc etc etc...

You are right, we need to separate the 'core' that requires more exactness and is key to having ME. Those require me to program logic in to handle them... The more secondary symptoms can be added removed more easily without technical skill or work by a developer.

 

[Leopardtail]

But in your previous post you described someone with the same level of around-the-house functioning as me as a 20 It don't work!

agreed, rather than focus on the use of any existing scale we need to treat them as 'inspiration' for how we describe core symptoms precisely.

I created a spreadsheet some time ago in which I split the parts of Bell: employment, household chores etc

 

[MeSci]

Posture makes all the difference for me. For instance, I can be "active" for about 8 hours a day, but a lot of that time has to be spent reclining using a computer, reading, etc. I can easily "get upright" for a few hours at a time if I am reclining the rest of the time. I can also do a fairly strenuous pilates class for an hour, but it is done lying down and wearing an HR monitor. No way I could do upright aerobic activity for that long.

Driving is another interesting thing. For me it is limited by cognitive and eye function--which, for me go together. On a good cognitive day, I can drive for a couple of hours. On a bad day...well I don't even think about it. So, since for me going out, means driving, the number of times a week is not limited by energy per se, but by ability to concentrate well enough to drive.

Sushi

Trying to get my head and eyes back together after trying to read text next to an animated graphic . I now have fingerprints on my screen from trying to cover it up while reading.

Anyone else have this problem?

 

[MeSci]

@Dr.Patient

My overall functioning is nowhere near 70 - 90% and there is no way I could work full time at anything. The 8 hours of activity includes basic self care--hygiene, cooking, eating, shopping, housework, personal email and other communication and everything else that someone would do "outside of a job."

Bell is a bloke. Maybe he doesn't need to do household chores so doesn't realise it is necessary to be able to do those as well. (Don't attack me, fellas, just generalising from personal experience and observation.)

I would have great difficulty with those too on top of full-time paid employment, and would have to eat convenience foods, at least during the week. And I can't keep on top of housework or washing anyway.

So maybe I'm not really a 60.

Maybe we get so used to our reduced function that we can overestimate our functional levels?

 

[MeSci]

@Sushi and @Valentijn both raised points about Orthostatic Intolerance, it's severity and how it affects functions
Would if be useful to 'join minds' and come up with some useful measures of severity and/or functional effect.

E.g. I can read when lying down for much longer in most states of fatigue (head up)
with very severe fatigue I must lift a book over my head so the head is 100% flat...

They are two examples of OI severity.

What examples could you all give that are more, or less severe from you own lives?

Extreme sensitivity to artificial perfumes, heat intolerance (drains my energy) and bright light (hurts my eyes). More than one person talking at a time - my brain goes into a spin.

 

[MeSci]

does everyone here have access to microsoft Excel?

I have, but am not prepared to try using it as I struggle.