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How to Help Your Doctor Understand ME/CFS Disability

This advice was first published in Vol 1, #3 of the Lyndonville Journal – a bi-monthly newsletter from Dr. Bell’s medical office that preceded the Lyndonville News (DavidSBell.com [1]). It is reproduced here with kind permission.*

The Difference Between Activity Limitation and Fatigue

The central aspect causing the disability of chronic fatigue syndrome (ME/CFS) is elusive. Patients say that they have fatigue, but physicians do not understand what is so bad about that. Nearly everyone has fatigue. Certainly physicians have fatigue.

Whatever it is that patients with CFS have is different; what is entirely unique is not the fatigue but the activity limitation.

When patients with CFS appear in front of a physician they look well, and this is a key to the diagnosis of the illness. When they explain that they have fatigue or are tired all the time, the physician waits for the next step because this doesn’t count. Everyone is tired. So what.

“No, you don’t understand,” the patient says. “I’m really tired.” And the physician begins to think of other things or begins a perfunctory examination to get on with it. The visit is essentially over, and the patient perceives that the physician does not believe them.

It is not all the physician’s fault.

What the patient must convey is that regardless of the words explaining why, the main problem is the activity limitation.

• They get up in the morning but have to rest before getting breakfast.

• They would lie on the couch for 20 minutes before attempting a shower. Now that’s fatigue.

• They can go out shopping, but only to the corner store for a loaf of bread because going to the supermarket is too much.

The reason for this restriction of activity might be fatigue, but by showing the effect this symptom has on their life the symptom becomes meaningful. The tired physician who works 16 hours a day will stop and listen about fatigue so severe that it prevents a person from going out of the house.

It is very important for the patient with CFS not to exaggerate the degree of fatigue. Patients tell me they are completely unable to leave the house, not realizing that they are sitting here in my office looking just fine. Sometimes, to emphasize how severe the fatigue really is, a patient will stretch it a little, and this is very confusing for the physician – it encourages the distrust.

I think the best approach to really understand the impact of fatigue on a person’s life is the Activity Diary, an accurate record of what actually happens during a typical week.

Keep it simple, and it is best if the patients push their activity as much as possible. For example, no physician will believe the diary that says: “Jan 1: stayed in bed. Jan 2: bed; Jan 3: bed, brushed teeth.” The trick is to have detail… but not too much.


A typical Activity Diary might read:

Date: Jan 1                                                       Symptoms

Up 9:30 AM: rested/light activity to noon.              Tired but OK

Noon: fixed lunch, went out for mail.                      OK

1 PM – 3 PM:  light activity around house               Pretty good

3 PM –  4 PM:  sleep

4 PM – 5 PM:  went to supermarket                       Joint & muscle pain worse; developed
                                                                          severe fatigue, headache, nausea;
6 PM-7:30 PM:  Resting in bed

7:30 PM – 9:30 PM:  Dinner, TV, light activity


There are several things that would catch the physician’s attention.

• First, it is detailed enough to seem reasonably accurate.

• Secondly, it demonstrates that not much happened during this particular day.

• Thirdly, it showed that the person tried to do something and related the symptoms which cut this activity short.

Going to the supermarket should not be considered excessive activity, yet even that is difficult. Most important, no one with good health who is well rested because of a relaxing day lounging around the house would go to bed after coming home from the supermarket.

Perhaps this one little detail might convince the physician that you are really talking about fatigue, not laziness.

Another approach that I have used in the office for nearly 10 years is an estimate of the different categories of activity during the day. The form I use in the office is as follows:

Daily Activity Ratio

Please list the number of hours spent in each of the following categories for an average day, a ‘good’ day, and a ‘bad’ day during the past month (total for each should add to 24 hours).

Activity                                          Average    ‘Good’     ‘Bad’ Day

a. Total hours sleeping:                   ______     ______     ______

b. Rest but not sleeping:                 ______     ______     ______

c. Light activity while sitting or
lying down: (reading, TV, etc.):        ______     ______     ______

d. Moderate activities in house
(light cleaning, desk work, etc.):      ______     ______     ______

e. Moderate activities out of house
(work, walk, drive, shop, etc.):         ______     ______     ______

f. Vigorous activities (exercise,
heavy cleaning, sports, etc.) :         ______     ______     ______

TOTAL                                            24 hrs        24 hrs       24 hrs

How many days of the past month would you consider ‘average’? _____

How many days of the past month would you consider ‘good’?      _____

How many days of the past month would you consider ‘bad’?        _____


What is very interesting about this method of activity rating is the constancy of the activity of a person with CFS over months and years.

I think this constancy is more diagnostic of CFS than any description of a very bad day. Even with the ups and downs characteristic of CFS, the activity level rarely goes up to normal.

Most healthy people have 12 hours of inactivity (sum of a, b, and c) and 12 hours of activity during the average day (sum of e, f, and g). But:

• People with severe CFS have 1 to 2 hours of activity (e + f + g);

• People with moderate CFS have 4 to 6 hours of activity;

• And people with mild CFS have 9 to 10 hours of activity.

It is important to communicate to your physician not just the presence of the symptom fatigue, but the importance of this symptom on your life. Whether “fatigue” is the right word or not, it is the effect of this symptom on your life that is important. It is this effect – the activity restriction – that seems to mess up a day.

But using the inappropriate word ‘fatigue’ may also mess up a day.

Don’t be pushy with your doctor. Do not expect that on the first visit the physician will understand CFS fatigue.

It is difficult to comprehend the complexity of this illness or any other with a single visit. But over time, the seriousness will become clear to your physician and the diagnosis understood. So lighten up, and give your doctor a break.

Dr. David S Bell, MD, FAAP, May 1999


* Reproduced with kind permission of the author from the paper archives of the Lyndonville Journal, © Bell, Pollard, Robinson, 1999-2000. All rights reserved. See Dr. Bell’s website to sign up for its e-successor, the Lyndonville News (www.DavidSBell.com).