What is PEM for people with ME?

Post Exertional Malaise (PEM)

If you run a marathon, climb a mountain, abseil or go mountain biking you may expect to feel a little bit tired after, but how about expecting to be too exhausted to stand up after cleaning your teeth or getting dressed?

To truly meet the criteria to be diagnosed with Myalgic Encephalomyelitis (ME) you must experience a noticeable increase in ME symptoms after ANY expenditure of energy, whether that is physical or emotional energy. You must have been suffering with this debilitating effect for more than 6 months.

The really strange thing for us to understand was PEM isn’t always instant. For my daughter it often came 24 or 48 hours after the energy expenditure. This meant it was difficult for us to pinpoint the trigger and find coping / managing techniques to minimise it happening next time.

So when she was in the more severe stages of ME she might get up out of bed, have a quick wash and clean her teeth and feel okay so come downstairs, snuggle up on the sofa, watch a bit of TV maybe for 20 or 30 minutes then go back to bed. The next day she noticed no change to her usual base line symptoms, then the following day she is too fatigued to talk, lift her head off the pillow or eat and drink. She is in pain or dealing with cramps and aches in every joint and muscle of her body, she is dealing with brain fog and confusion along with blurry vision and a band like headache.

We quickly recognised that physical energy expenditure tended to cause the PAYBACK of PEM around 48-60 hours mark for Elizabeth but the PAYBACK of PEM for emotional energy usage, (crying, stressing, panic attack, anxiety) was 6-18 hours in a clear onset.

The only way to try and limit PEM is to recognise the cause or trigger and mitigate it when you can by PACING, (resting as much as possible before doing an activity you need to do, doing it for as short a time as possible then resting straight after). This is easier with physical energy usage and less so with emotional usage which is usually reactionary and unpredictable.

Imagine being really upset that your pet died, knowing all the time you are crying and grieving that the longer you do it for the worse your health is going to be, but having no control over the upset or your reaction to it. Imagine knowing that because you have been upset by the loss of your pet you are unlikely to leave your bed for the next week or more other than to crawl to the toilet. Imagine knowing that and being 14 years old and being told continually by doctors to ‘snap out of it’

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