Protocol Version 2

Validation Bundle Without Grip Strength

A leaner protocol using only 5x sit-to-stand and fatigue survey data. This version is easier to deploy in home, remote, or low-equipment settings.

Functional Performance

5x Sit-to-Stand

1 timed set

Minimal equipment, quick to perform, and useful as a whole-body function measure.

Draft Upper Extremity Add-On

Count total reps in 30 seconds

Optional exploratory add-on for settings without a dynamometer. Use a fixed object weight and record the exact version used.

Lived Burden

1 short questionnaire

Captures the part of “energy” that patients often notice first in daily life.

Measurement Steps

Collect the Energy Score and measured bundle on the same day whenever possible.
Use the same chair height and same instructions for every 5x sit-to-stand measurement.
Record the total time in seconds and note if arms were used for safety.
If you use the exploratory arm-curl add-on, use a seated 30-second protocol and count completed reps rather than timing 5 repetitions.
Use the same validated fatigue instrument every visit and normalize the result to a 0 to 100 fatigue burden score.
Capture context that may bias results, such as acute illness, recent exertion, pain flare, or poor sleep.

Upper Extremity Add-On

This is a draft protocol-page add-on for further analysis. It is not yet part of the measured-function score.
Use a stable chair without wheels and test one arm at a time, preferably the dominant arm.
Start from the arm down at the side, then complete as many full, controlled curls as possible in 30 seconds.
Keep the elbow near the side and avoid swinging or trunk rocking to create momentum.
Score the test as the total number of completed reps in 30 seconds.
Record which loading version was used so repeat visits stay directly comparable.

Version	Load	Use Case
Standard protocol	5 lb object	Preferred home or clinic version when a standard weight is available.
Modified protocol	2 to 3 lb object or canned goods	Fallback option when no standard weight is available.

Keep the load fixed within a participant over time. Do not mix 5 lb and 2 to 3 lb results as though they are the same test.

Visit Setup

Try to test in the same part of the day at each visit, ideally within the same 2-hour window.
Morning or late morning is often easiest for consistency.
Record whether the participant is fasting, post-meal, sleep-deprived, acutely ill, in pain, or recovering from unusual exertion.
Record caffeine use, recent medication changes, and any assistive-device use that could affect the result.
If post-exertional worsening is common, complete the fatigue survey before the sit-to-stand test.

Chair Protocol

Use a standard, stable chair without wheels.
Preferred seat height is about 43 to 46 cm, roughly 17 to 18 inches.
Use the same chair for repeat visits whenever possible.
Place the chair on a non-slip surface with enough room to move safely.
Standard instruction: sit fully back, feet flat, then stand up and sit down fully five times as quickly and safely as possible.
Preferred method is arms folded across the chest, but if arms are needed for safety, record that and keep the method consistent next time.
Start timing on “go” and stop when the person reaches full standing at the fifth repetition.
Record time in seconds plus any instability, hesitation, arm use, or incomplete stand.
If the participant holds the chair, pushes off repeatedly, or uses steady hand support, record that because the measured-function calculator applies a penalty for assisted completion.

Fatigue Protocol

Use one fatigue survey consistently rather than changing tools between visits.
A short option like the Fatigue Severity Scale is practical for repeated use.
Administer the survey before physical testing if symptoms are easily worsened by exertion.
Ask the participant to reflect their recent usual burden rather than just the last few minutes.
Convert the raw survey result to a 0 to 100 fatigue burden score before entering it into the calculator.
Record whether the score reflects a typical day, flare day, or recovery day.

In this lean version, the fatigue survey carries more of the interpretation load, so keep the survey method especially consistent.

Frequency

Scenario	Cadence	Notes
First validation pilot	Baseline, then every 4 weeks for 3 months	Still the best default starting cadence.
Remote or home tracking	Fatigue weekly, sit-to-stand every 2 to 4 weeks	Fatigue may change faster than chair-rise performance.
Routine follow-up	Every 6 to 8 weeks	Appropriate when changes are expected to be gradual.

Best use case: when you need something practical and repeatable without buying new equipment.

Tradeoff

You gain simplicity and broader deployability.
You lose a direct objective strength measure, which makes the bundle slightly less rigorous.
The draft arm-curl add-on may recover some upper-extremity signal, but for now it should be treated as exploratory strength-endurance rather than validated scoring input.
This version is still useful for testing whether the model tracks functional performance and symptom burden over time.

Minimum Data Capture

Date and exact time of testing.
5x sit-to-stand time and whether arms were used.
Whether chair support was none, light, or moderate during sit-to-stand.
If arm curl is used, record total 30-second reps and whether the standard 5 lb or modified 2 to 3 lb / canned-goods version was used.
Fatigue survey raw score and normalized fatigue burden score.
Exact chair used or at least seat height if multiple sites are involved.
Any acute confounders: illness, poor sleep, unusual exertion, pain flare, or medication change.