The Wondrous Functional Ability Scale

Maybe not wondrous, but certainly handy. If you adapt one of these little babies for yourself, and press them upon the unwilling public - family, friends, medical practitioners, the dog - then rather than undertake laborious explanation every time someone asks how you are (caveat: and actually wants to know), you can make a percentage announcement instead. Trumpet intro/jazz hands strictly optional.

You'll quickly find that most people wrote a shopping list on the back or threw it out with the weekend papers, and will say wildly positive things when you tell then you're 5%. But hey, you did your bit.

Knowing where you are on a functional ability scale helps alleviate that feeling of panic as you try to condense the last day/week/month/year into a brief and useful answer. Conveying how you are with a foggy brain can be a challenge, as can deciding how much or how little to say.

I’m not suggesting a percentage be mentioned when people ask, How are you? by way of greeting. The only proper response to that is, Good thanks, and you?

To me, functional ability percentages are more for when you’re specifically asked about your health, like in a health-care setting. At a social level, it’s up to you whether you wish to discuss your health, or disclose anything. But if you do, functional ability scales can help with common problems that people with ME encounter, such as others thinking they know better than you how you are. They can tell this by looking at you – and watch out if you’re wearing lipstick – they think you’re cured.

When you’ve had a chronic condition for a decade, especially one which has a stereotype of being a warm hollow for hypochondriacs to snooze in, you don’t go out of your way to draw attention to it in normal conversation. The downside to this is that you can be inadvertently misleading. If you’re not actively groaning in pain, it’s easy for people to assume you’re feeling dandy and are about to commence world domination.

Functional ability scales can potentially help engender understanding. Probably the only pitfall I've encountered is feeling pressure from others to say an improved number because they want so badly for me to be doing better. I understand, I want desperately to be improved too.

There are a few available to adapt:

• Jodi Bassett has a three-part version.
  
• The South Australian M.E. Guidelines reproduce the basic one by David Bell in the appendix.
  
• The FAS I’m currently using (below) is very far from perfect, but does for now. It's adapted from the UK-based AYME scale.
• Dr Lerner's Energy Index Point Score (pdf) and his site here
  

I just wish I had one ten years ago. Mine needs a major overhaul, and the addition of some info down to about minus-seventy. It definitely isn't comprehensive enough for severe M.E.

__________________________________________________________________

M.E. FUNCTIONAL ABILITY SCALE

FULLY RECOVERED
100%
No symptoms even following physical or mental activity. Able to study or work full-time without difficulty, plus enjoy an active social life.
VIRTUALLY RECOVERED
95%
No symptoms at rest. Mild symptoms following physical or mental activity - tire rather easily but fully recovered next day. Able to study or work full-time without difficulty but a slight restriction on social life.
MILDLY AFFECTED
90%
No symptoms at rest. Tire easily and mild symptoms following physical or mental activity. Study or work full-time is possible with some difficulty. Social life rather restricted.
80%
Mild symptoms at rest, increasing symptoms following physical or mental activity. Full-time study at school/university is difficult, as is full-time work, especially if it is a crowded, noisy or busy environment. Home tuition or part-time study may be possible. Usually able to drive.
MODERATELY AFFECTED
70%
Mild symptoms at rest, worsened to moderate symptoms by physical or mental activity. Daily activity is limited. Part-time study/work outside of the house is very difficult, but may be possible for a few hours several days per week. Social life is very restricted. With careful pacing of activities and rest periods, there may be windows of time during the day when one feels freedom from some symptoms. Able to drive most days. Able to care for oneself.
60%
Mild to moderate symptoms at rest, worsened to severe by physical or mental activity. Daily activity is quite limited. Afternoon rest needed. Study or work outside the home very difficult unless additional support is available, e.g. use of a wheelchair/quiet room for a rest period. Short (2 hours total) daily study/work from home may be possible on good days. Quiet, non-active social life possible. May be able to drive on good days. Able to care for oneself most of the time.
MODERATELY TO SEVERELY AFFECTED
50%
Moderate symptoms at rest. Increasing symptoms following physical or mental activity. Daily activity is very limited. Care must be taken not to overdo one's lifestyle at this stage. Much rest during the day and afternoon rest is needed. Simple, short (1 hour) home study or home activity may be possible, when alternated with quiet, non-active social life. Concentration is limited. Not confined to the house but unable to walk far when out of the house. Can manage a longer trip out of the house in a wheelchair. May be able to drive short distances occasionally. Able to care for oneself, but require assistance, e.g. with grocery shopping.
40%
Moderate to severe symptoms following any activity. Requires many regular rest periods during the day plus prolonged afternoon rest. Only one activity possible some days - friend dropping by, doctor's appointment, short home study or time on computer (half hour) etc - usually requiring rest day/s in between. Not confined to the house but for trips outside of the house a wheelchair is needed. Unable to drive. Requires assistance to care for self, e.g. meal preparation.
SEVERELY AFFECTED
30%
Moderate to severe symptoms at rest. Severe symptoms following any physical or mental activity. Usually confined to the house but may occasionally be taken for a quiet trip out in the car. Most of the day resting. Very small tasks possible but mental concentration poor and home study/work too difficult. Unable to care for oneself without assistance, usually able to prepare simple breakfast.
20%
Fairly severe symptoms at rest and following activity. Weakness in hands, arms or legs is still restricting movement. Unable to leave the house except occasionally. Confined to bed most of the day but able to sit upright for short periods to eat. Unable to concentrate for very long, can read for very short stints, possibly watch short periods of TV lying down. Can listen to radio. Unable to care for oneself, may be able to prepare simple breakfast.
VERY SEVERELY AFFECTED
10%
Severe symptoms at rest and following activity. Weakness and pain throughout body. In bed majority of the time. No travel outside the house. Concentration very difficult. Unlikely that TV is possible but might be able to listen to radio or audio book. Unable to care for oneself.
5%
Severe symptoms almost continuously. Weakness and pain throughout body; dizziness and nausea. A little quiet radio or audio book may be listened to. Unable to care for oneself at all.
0%
Very severe symptoms on a continuous basis. In bed constantly, extremely ill even with permanent rest. Light and noise are very painful to the eyes and ears. Severe pain throughout body. Nausea and severe weakness make eating extremely difficult. Any stimulus worsens symptoms. Unable to care for oneself at all.

__________________________________________________________________