What is PEM? Understand Why Activity Is Dangerous with ME/CFS

Activity of any kind is dangerous to me,

and that’s because of
post-exertional malaise, or PEM.

You cannot understand
myalgic encephalomyelitis

without understanding PEM.

I’ve had ME for 18 years,
and since then every time

I do anything I have to consider

the potential consequences of PEM.

In this video I will explain to you

what post-exertional malaise is,

how it affects someone
with myalgic encephalomyelitis,

and what that means for you

as someone who knows a person with ME.

And at the end I'll share two ways

you can modify your expectations

of people with ME,
for the good of all involved.

If I had to explain PEM
as succinctly as possible

I would say this: post-exertional malaise

is injury caused by overexertion.

Notice I said injury,
whereas the usual descriptions

would say symptom exacerbation.

I will make the reason
for this word choice clear later,

but first, let’s break down
what post-exertional malaise means.

The "exertion" in "post-exertion"
refers to overexertion,

meaning exerting yourself
more than you should.

This exertion can be physical,
such as walking;

mental, such as reading;

emotional, such as feeling excitement;

or sensory exposure,
such as being around loud noises.

What may surprise you though

is how easily overexertion can occur.

Whilst going for a run
would certainly cause PEM,

so can digesting food,
smelling perfume,

or thinking any thoughts at all,
especially for those

with more severe cases of the condition.

To make things worse,
PEM often doesn’t occur

immediately after overexertion;
it can take up to 72 hours.

This makes it hard to avoid,

as you don’t always know
when you’ve done too much,

but it also is the cause
of much misunderstanding among others.

They see someone with ME doing
an activity and appearing fine,

thus they reasonably
assume that this person

is able to repeatedly
do this activity without harm.

What you don’t see is the delayed
harm they experience,

often in bed riddled with a wide variety

of awful and debilitating symptoms.

PEM can last only a few days,
but can also last weeks,

months, or even cause
permanent deterioration of health.

In fact, repeated PEM from doing a program

of graded exercise therapy 10 years ago

is the reason I am
so severely unwell today.

Let me give you a real example of PEM.

I recently had a one and a half
hour phone call,

something that is definitely
outside my ability to safely do.

During the call the other person
likely never noticed

anything wrong with me,
although towards the end

I definitely had increased
difficulty with word finding

and memory recall, among other symptoms

including muscle pain and a migraine.

It took me two weeks
to recover from the call,

during the first few days of which
my symptoms increased.

I suffered muscle pain, exhaustion,

increased cognitive impairment,
more commonly known as brain fog,

heart rates too high or too low,
among many other symptoms.

And here’s the thing:
the person on the other end

of that phone call would have had

no idea what the call cost me.

So going back to my describing PEM

as injury instead of symptom
exacerbation, here is why.

Symptom exacerbation just lets you know

that our pre-existing
symptoms are worsened,

which is of course true.

But injury lets you know the real,

long-term harm involved in PEM.

Injuries come in all forms.

Like a bruise, PEM may only
last a few days.

But there are worse forms of injury,

ones that may leave you incapacitated

for years or even lifelong.

PEM can cause those too.

Living with the risk of PEM means

diligently practicing what we call pacing.

Pacing means choosing what

and how much you do in order to avoid PEM.

In my opinion it is the best tool we have

in order to maximize our quality of life

and minimize suffering
and deterioration of health.

Pacing is hard.

After 18 years of illness
I still struggle with it.

It doesn’t just mean identifying
what you can and cannot do,

but also having the willpower

to resist doing the things you want.

Pacing requires that we miss out

on many enjoyable parts of life.

We miss out on time with friends
or engaging in our hobbies.

You even come to miss the things

you never thought you would,

like doing the dishes
or tidying your living space.

But with ME less is truly more.

This leads me to the two ways
you can modify

your expectations of someone with ME.

Firstly, trust them.

Their symptoms are invisible, but real.

If they say they cannot do a thing,
believe them.

For healthy people it might be empowering

to say "You can do it,"
but for someone with ME

this can be a very dangerous lie.

PEM can cause real, long-term harm

and when you pressure us to overexert

you are pressuring us towards harm.

Second, be understanding
if we cancel on you.

Our symptoms are unpredictable,
and sometimes,

often even, we have to cancel plans

that we had every intention
of following through on

in order to avoid PEM.

If we push through on a bad day

then the risk and severity
of PEM is greatly increased.

Pacing to maintain health is hard enough

without external pressures and guilt

provided by those around us.

Any understanding and acceptance
that you can offer us

will be greatly appreciated, I assure you.

If you found this video helpful,
then please subscribe

for future videos on how to understand

those in your life with ME.

My next video will explain
that ME isn’t fatigue:

it is a serious
and complex multi-system illness.