I Can But I Can't!

Remember when filling in the questionnaire (ESA50) that they are assessing you for your ability to work. It is for this reason that I usually suggest that people with M.E. fill in the questionnaire in regards to how they are on their worst days. By describing your worst day, you are describing the least you are able to do every day. Some advice giving places disagree. Obviously it is up to you how you approach it, but what is important is that in the space you are given at the beginning of the form, you tell them how you are filling it in.

For example:

"I am filling in the form describing my worst days. Approximately 4 days in 7 are this way."

(If your worst days are very rare, then I'd suggest filling it in with your most usual days instead).

The form tries to make everything very black and white. Life isn't black and white. Don't go through it just ticking boxes, because you will make it far too easy for them to turn your application down. Write in the spaces you are given to write in, but be concise, because Decision Makers have limited time to look at your evidence (I believe it is ~20 minutes per case).

For each question, consider these things carefully:

• severe discomfort.
• pain.
• breathlessness.
• extreme fatigue.
• repeatability.
• reliability.
• safety.
• variablility.

If you can do the activity, does it cause you discomfort, or severe discomfort?
If you can do the activity, does it cause you pain?
If you can do the activity, does it make you breathless?
If you can do the activity, does it cause you fatigue or extreme fatigue?

If you can do the activity, how often / soon can you repeat it?
If you can do the activity, can you do it to a reliable level?
If you can do the activity, can you do it safely?
If you can do the activity, can you cope with variations in how it is done?

An employer doesn't want an employee who can only climb two steps an hour!  Or an employee who knows how to turn the kettle on, but is likely to pour hot water over their hands.

Some examples of how to use the above points:

• I cannot walk 50 metres repeatedly or safely, without undue discomfort, pain, and extreme fatigue.
• I cannot remain stationary, standing in one place, for more than 40 seconds, without severe discomfort, pain, and extreme fatigue, reliably, repeatedly, or safely, due to Postural Tachycardia Syndrome.
• At times I can raise both arms, but most often it is with severe discomfort and pain, often causing extreme fatigue. I cannot ever raise both arms repeatedly, or reliably.
• I cannot learn to do a task such as using a washing machine without severe discomfort and fatigue, reliably or with variability.

You can of course add your own descriptors (I use 'distress' a lot on my form), but they may not be taken into consideration by the assessor or Decision Maker.

Variability

Most of those criteria are subjective. That which is severe discomfort to someone unused to pain may be mild discomfort to someone who's lived with pain all their life. Variability stands out as a hard criteria to understand.

It is mostly in reference to the mental health section of the form. (Though, you could try and apply it to the physical side; you may be able to climb normal stairs, but totally unable to cope with spiral staircases, for example).

It is easiest to use in the following questions:

11. Learning how to do tasks
12. Awareness of hazards or danger
13. Staring and finishing tasks
14. Coping with changes
15. Going out
16. Coping with social situations

Fluctuationing Conditions

M.E. is a fluctuating condition. As such, trying to fill in the black and white, yes no, pigeon holing form (the ESA50) is particularly difficult. M.E. is a round peg which we're trying to ram in to a square hole. We have to make it fit.

One part of doing this, as already mentioned, is to state at the beginning of the form whether you are filling it in as regards your condition on a bad day, or your condition on an average day.

The other thing to do, is to give specific examples to illustrate how you fluctuate. When doing this, you need to understand how the Decision Maker works. They essentially have a tick box system, which they have to try and fit your answers into, in order to award you points. And they want to award you as few points as possible. As such, when you describe fluctuations be careful not to give the impression that you can do more than you can. Some examples:

Bad: "Sometimes I can walk quite a lot further than I can other times."
Good: "Most of the time I cannot walk 50 metres. On my best days I might be able to walk 50 metres, but I wouldn't be able to repeat it reliably or safely."

Bad: "I can cope with some social situations, but not others."
Good: "I can cope with official social situations, such as attending a doctor's appointment, but I cannot cope with a social situation with friends, or where there is noise and new people."