This post introduces an objective severity scale for applicable multisystem neuroimmune diseases.
It is not a replacement for the upcoming MEICC scale (or ICSS), Bell Scale, Karnofsky Scale, Carruthers 2003 symptom scale, Orthostatic Grading Scale, or any other severity scale for diseases. It is not a replacement for a good disease definition or a good biomarker measurement.
It is its own severity scale with a narrow design goal.
Unlike most, this scale is initially meant for sufferers.
Other uses are not ruled out.
The largest motivation is for us to understand one another better, especially in casual online discussions and other places where existing scales (and biomarkers) are impractical.
There are quite a lot of ways this will help us. With better understanding, we can make progress in science, health, and justice. We can help one another better. We will collectively understand the disease better.
The most important part is objectivity.
Objectivity ensures that we are on the same page. I believe that it significantly reduces prejudice and misconceptions.
For example, any two people's definitions of "moderate" (or "severe" or "mild") are quite often vastly different. Yet we use those terms in discussions of science, medicine, advocacy, and more.
As a result, our advice and analyses can be completely off without our realizing it. I believe that they usually are.
This scale is a small step toward objectivity and therefore better understanding of one another at a basic level.
More in future posts.
Here is the design goal.
Above all, this scale is meant to be objective.
It is also intended to be (in no particular order and with a couple of redundancies for clarity):
- mistake-resistant for fogged people
- reliable (test-retest and inter-rater)
- short (e.g., contrast with Carruthers 2003 symptom scale)
- recognizable (e.g., everybody knows what it means)
- appropriate to the disease1
- free of confusion about the meaning of characteristics (e.g., "severe symptoms at rest" in the Bell scale — what does "severe" mean in that sentence fragment?)
- free of decisions about the relative priorities of multiple characteristics within a range (e.g., what if you are A but not B? Contrast with Karnofsky and Bell (e.g., "confined to bed or couch most of day; unable to concentrate more than 1 hour per day"))
- free from subjective practitioner judgements and influence from misopathy (e.g., "hospital admission is INDICATED" in Karnofsky — who decides what is indicated and by what rules? Will a sufferer or carer know this? Are those rules consistent?)
- free of bias due to, for example, the fact that hospitals are more dangerous to sufferers of these diseases than to other diseases (contrast Karnofsky; also remember that different countries have non-comparable rules)
- at least slightly resistant to meaning-twisting by denialists
- usable in online environments including polls and surveys (with software restrictions on number of answers, length of questions, etc.) and with decent binning for histograms (more later)
- available without Internet access
- translatable into different languages and cultures without loss of meaning (e.g., "severe symptoms at rest" in Bell scale might not translate well to a language that uses different words for severity)
- usable in casual environments (minimal effort, immediately available, etc.)
- nonproprietary (with full description not modifiable by denialists)
- open access and not behind a paywall or requiring registration
- possible to reason about mathematically (more later)
- reasonably correlated with subjective severity
- likely to reasonably correlate with other severity metrics
- possible to label objectively
- possible to label nonlinearly (this might be critical for reliability, online usability, and correlation with subjective severity; more later)
- enough gradations at most severity levels (contrast both Karnofsky and Bell at severe levels — more later)
- able to serve as a reality check
- at least slightly grokkable to non-sufferers
- capable of averaging fluctuations in severity over time (more later)
- rapidly comparable
- nonintrusive (in every respect)
- not too much to ask
- reasonably applicable to most sufferers who self-identify as having the disease (more later)
- generally accepted by sufferers (I hope)
- and memorable.
You should be able to remember the main part of the scale and its meaning without having to look anything up.
Where these goals conflict with one another, the best balance is sought.
The comments on other scales are not intended to diss them. They are just examples of goals for this scale.
More nerdy blather in future posts.
There is one critical goal that cannot be achieved along with the other goals, and so requires a separate scale.
This scale does not achieve the critical goal of directly measuring the multisystem nature of these diseases.
All existing scales that I am aware of also fail to adequately measure this critical variable. More comprehensive scales are necessary.
Perfect scales are not possible
Perfect scales are not possible. These diseases are enormously multidimensional. The best description of you is you. (But we still need a scale.)
Therefore, like every other scale, we are going to make an imperfect scale. But unlike other scales, we have our own goals. So please bear with it.
Here is the question I want you to answer:
How many times did you leave the house in the last 365 days?
- If you are not sure, please say so or provide a range.
- Please do not adjust your answer. Answer according to the scale.
- Please explain any special circumstances (such as being
a hermit or getting infusions every week).
To meet our goals, we do not define these.
- Leaving the house means leaving your house (or
apartment, etc.) for any reason. If you were more
than 5 meters (about 16 feet) away from the structure
for more than 1 minute, then it counts.
There are no exceptions.
- EXAMPLE: if you were pushed in your wheelchair 6 meters away from your house twice a day for 2 minutes each time, then you left the house 730 (SEVEN HUNDRED AND THIRTY) times.
This is to meet our goals, including objectivity, memorability, and reliability.
- The numbers are simple:
- 365 times means once every day on average
- 52 times means once every week on average
- 12 times means once every month on average
- there are about 260 weekdays in 365 days
- 182 times means every other day on average
- 36 times means 3 times per month on average
- 6 times means every other month on average
- The question states "in the last 365 days". NOT "in the last year". This is to prevent confusion about calendar years.
Very severe level of severity
This scale is completely unsuitable for
because it does not distinguish from
severe. They are
both at or near 0 on the scale.
Very severe requires a
different measure within the same scale.
Please tell me your suggestions for
very severe that also
meet the design goals listed above. For example, zero to 5
minutes vertical per 24 hour period. If no objective
measure exists that is adequate, then we will either use
more conventional descriptions or rely on descriptions
supplied with the severity level.
This is version 1.
Version 2 will be identical, but will in addition provide
labels and a way to distinguish
very severe from
It will also provide a suggested format for Internet polls.
The more a scale is used, the more useful it becomes.
How many times did you leave the house in the last 365 days?
SF-36 is routinely used inappropriately, as are scales that are more obviously intended to be denialist.