PEM: Running out of battery & feeling intensely unwell: a carer’s perspective
I guess you’ve probably heard of Myalgic Encephalomyelitis – by its abbreviation ‘ME’.
Maybe you’ve got an idea that it’s about being tired all the time. That would be understandable because some people call it Chronic Fatigue Syndrome (‘CFS’ for short), a name that is despised by most of us who find it so understates and misrepresents our lived experience of the illness.
Actually, I consider it an insult, but NICE, the UK’s National Institute for Health and Care Excellence, has hit on a compromise by calling it ME/CFS, so that’s what I’ll do here.
Fatigue
Sure, ‘fatigue’ is essential to the diagnosis, but not the kind with which most of us are familiar. It is physical and mental, all consuming, overwhelming, and you can’t sleep it off.
Patients say things like:
“I feel like I’ve been hit by a bus!…. like everything’s been sucked out of me….
…as if I’ve just come round after being knocked out in a boxing match…”
But there’s a problem with this emphasis on ‘fatigue’ alone, because there’s much more to ME/CFS than that. ME/CFS is a multi-system illness with multi symptoms to match. Four are needed for a diagnosis in the UK: fatigue; PEM; sleep disturbance; cognitive difficulties. Many more can be experienced.
Post Exertional Malaise – the hallmark feature
The ‘hallmark’ or ‘cardinal’ clinical feature of ME/CFS is Post-Exertional Malaise (PEM). NICE describes PEM as:
the worsening of symptoms after an activity which is “disproportionate to the activity” (i.e. much worse than you’d expect) …
“often delayed in onset by hours or days”, and “has a prolonged recovery time that may last hours, days, weeks or longer” (NG206).
Some prefer the term Post-Exertional Symptom Exacerbation (PESE) , since, as well as an all-pervading and intense feeling of unwellness (‘malaise’), all the person’s symptoms can intensify.
When we mention ‘activity’ and ‘exertion’ here, we’re not talking about running a 10K or climbing Yr Wyddfa, and it doesn’t have to be physical; it could be cognitive or emotional, or a combination.
Activity can be anything
All the examples I give about the triggers and experiences of PEM are based on our family’s lived experience of ME/CFS. For someone with severe ME/CFS, an ‘activity’ could be brushing their teeth – and having to decide whether to do this ‘activity’ today or wash their face, because they can’t manage both.
It might mean, once a week being helped from their bed into the wheelchair and being pushed to the back door to spend 5 minutes feeling the fresh air, wearing ear defenders and an eye mask – but then having to rest quietly without talking for the rest of the day in their darkened, sound suppressed room in the bed where they’ve spent the past 3 years.
Pushing beyond these tiny limits can induce a worsening of all their symptoms – that is Post-Exertional Malaise.
ME, the disease where pushing harder can make you sicker
What PEM feels like
When people with ME/CFS try to describe PEM they often say
“I feel like I’ve been poisoned”.
They talk about an awful heaviness:
“I feel like I’ve got heavy weights attached to my body…
like I’ve got liquid lead running through my veins instead of blood…
as if I’m an alien who’s landed from another planet which has less gravity…”
“I feel that I can’t support my body, even when I’m lying down.”
Body pain increases and other disturbing sensations:
“I get a lot of different sorts of pains, all over my body – sometimes in my limbs, my hands and feet… and burning sensations – sometimes my whole body is hurting… I get pain in my face and a real weakness, a heavy feeling, in my jaw and cheeks.”
“It makes me open my mouth because I haven’t got enough energy to keep it shut – and my tongue… I mean, you’re not usually aware of it… but I become aware of it… how weak it is…”
“During the night I wake up with vertigo and coloured flashing lights going off behind my eyes. When that happens I have to keep the light on and my eyes open until I can fall asleep again”.
Physical coordination and speech can be affected:
“One day, someone actually asked me if I was drunk, because as I get worse, my speech becomes impaired and I lose my balance and bump into things…
“When I was in the hairdressers recently, the hairdresser had to keep straightening me, pushing me upright – because it’s hard to sit up for a long time and I was tilting to one side!”
“I can only keep up with a conversation for a short time, then I start to lose track and get more and more confused…”
People with severe ME/CFS can become reliant on a wheelchair, or be confined to bed, lose the ability to speak, eat and drink:
“We had a list of things like ‘Do you want a wee?… a drink?… the window open? And he would squeeze my finger when we got to the right one. Sometimes he could whisper a few words and we would try to piece together their meaning… He was fed by naso-gastric tube in a hospital bed for 18 months”.
Cognitive and sensory symptoms increase:
“I can’t look at a screen especially if there’s much movement, and I have to stop trying to read… I can’t focus my eyes, and have to keep looking away… it’s like I’ve become dyslexic… and I can’t get any meaning from the text…
If I push myself to keep going, it starts to affect me all over… I get pains in my arms and legs which is crazy because what have they got to with reading?! I become more and more sensitive to light and sounds…”
Dysautonomia is common:
“Pain in my heart is often an indicator that I’ve done too much…I get palpitations… missing beats… dizziness and a feeling of near collapse – I’ve had this a lot when standing up to do something, like doing the washing up – and a feeling of not being able to get enough oxygen (this is nothing to do with anxiety, by the way)…”
PEM stops you functioning:
“My whole body just feels like its slowing down, like it’s running out of battery… and the more I try to push against that, the worse my symptoms become…
The only thing I can do is to stop… my body isn’t working, my brain isn’t working… I try to resist going to bed because I want to do stuff, but I just have to stop and rest”
“For most people ‘resting’ could men sitting down and watching telly, or reading a book, but that’s ‘activity’ for me and would make things worse when I’m getting PEM… I have to stop completely and lie in the dark…
I’ve had to learn how to do ‘deep rest’… this means making my mind completely blank… I can’t think, imagine or bring things to mind, because even this will make me worse…”
Post-Exertional Malaise is the most debilitating feature of ME/CFS, because it stops people from doing the things they want to do: being able to study, hold down a job, enjoy leisure and social activities that most of us take for granted, look after their families or, in the most severe cases, undertake their own personal care.
ME/CFS takes away people’s lives
A desperate need for research
Because of a historic lack of biomedical research, there are, as yet, no effective treatments. In 2009, US Prof Dr Nancy Klimas drew this stark contrast:
“My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested.
Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses, I would rather have HIV.”
Take part in ground-breaking research
DecodeME will use small differences in the DNA of people with ME/CFS to look for biological causes of the disease.
If you, or a family member, or a friend, have been diagnosed with ME/CFS (there were an estimated 13,000 in Wales before long COVID), please join the world’s largest research study into the genetics of this illness, Decode ME. Edinburgh University has been awarded £3.2m to analyse the genetic samples of 25,000 patients. Healthy people also needed. It’s easy to take part from home.
Find out more: https://www.decodeme.org.uk/
And, if you live in Wales, please check out the WAMES website and get in touch https://wames.org.uk/
Rob, parent / carer
Find out more about World ME Day and PEM
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