From my informal 2024 – “Score my Long Covid / Long Vax symptoms” survey. Participants learned about the survey via social media; on Facebook, X, and Reddit. In the graph above 10 = 100% functionality, 5 = 50% functionality, 1 = 10% functionality. Obviously, long-haulers vary widely in what they are able to do on a typical day. And people with Long Covid / Long Vax know that what they can do often varies a lot from one day to the next. Consider this a snapshot in time. With 170 respondees, it is likely a fairly representative sample.
This is a summary of a CFIDS disability scale from The Doctor’s Guide to Chronic Fatigue Syndrome by David S. Bell, MD, published by Addison-Wesley, ISBN 0-201-40797-2. Dr. Bell treated people with ME/CFS for many years.
100: Patient has no symptoms at rest, no symptoms with exercise; has normal overall activity; is able to work full-time without difficulty.
90: Patient has no symptoms at rest, has mild symptoms with activity; has a normal overall activity level. The patient is able to work full-time without difficulty.
80: Patient has mild symptoms at rest, symptoms worsened by exertion. Patient has minimal activity restriction noted for exertion activities only; patient is able to work full-time with difficulty in jobs which require exertion.
70: Patient has mild symptoms at rest. Patient clearly notes some daily activity limitation. Overall, the patient functions close
to 90% of expected, except for activities requiring exertion. Ability to work full-time with difficulty.
60: Patient has mild to moderate symptoms at rest, with daily activity limitation clearly noted. Overall functions 70-90%. Patient is unable to work full-time in jobs which require physical labor, but has the ability to work full-time in light activity if hours are flexible.
50: Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise or activity. An overall activity level is 70% of expected. Patient is unable to perform strenuous duties, but can perform light duty, or desk-work 4-5 hours per day, requires rest periods.
40: Patient has moderate symptoms at rest, and moderate to severe symptoms with exercise activity. The patient has an overall activity level of 50-70% of expected. Patient is not confined to house; is unable to perform strenuous duties, but can perform light duty/desk work 3-4 hours/day, but requires rest periods.
30: Patient has moderate to severe symptoms at rest, and severe symptoms with any exercise. Patient has an overall activity level reduced to 50% of expected; is usually confined to house. Patient is unable to perform any strenuous tasks; is able to perform 2-3 hours of desk work per day, but requires rest periods.
20: Patient has moderate to severe symptoms at rest; is unable to perform strenuous activity. Overall, activity levels are 30-50% of expected. Patient is unable to leave house except rarely, is confined to bed most of the day, is unable to concentrate for more than 1 hour/day.
10: Patient has severe symptoms at rest, is bedridden the majority of the time. Patient has no travel outside of house. Patient
has marked cognitive symptoms preventing concentration.
0: Patient has severe symptoms on a continuous basis, is bedridden constantly, and is unable to care for him/her self.
If you wish to quantify the number and severity of your patient-reported symptoms, here is the Google Forms survey link: