It’s not just being tired all the time: Post Exertional Malaise, the defining, hallmark symptom of ME/CFS

I recently joined redit and noticed that PEM is poorly understood as a concept, even within the chronic illness world. So here is some clarification. PEM is unique to ME/CFS. It's the defining characteristic that distinguishes it from other chronic illnesses. What it is not Malaise isn't tiredness, it's illness, lack of wellbeing, being sick …

Tips, tricks, and life hacks for living with ME/CFS

I did a talk for my local support group. Here's a video of it. CW: discussion of suicide risk towards the end of the video. There may be other sensitive topics too, but I don't remember what I covered at the moment. I did a talk on tips, tricks, and life hacks for people with …

I have Hipster Long Covid (I was doing it before it was cool), here’s my advice on how to avoid becoming like me

In March 2020 the scientist of the ME community predicted that Covid-19 would cause ME, a lifelong post-viral fatiguing illness, in a portion of those who recovered from infection. They estimated roughly 5-10%, based on SARS1, would struggle to return to pre-infection energy levels, and that many of these would never recover. It didn't take …

Heads it wins, tails I lose

Am I depressed or flaring? I'm tired and can't get the energy to do anything. I feel sick. I have a headache. My stomach hurts. My mood is low and I'm having panic attacks and anxiety. I can't get to sleep but when I do I can't wake up. I want to cry but can't. …

CFS vs ME, or something else entirely, or why names matter.

There is a lot of debate around the place about the naming of this condition from which I suffer and what is should be called. There is general agreement that Chronic Fatigue Syndrome (CFS) is an inappropriate and misleading name. Other names have been suggested by various groups, but there is yet to be an …

I want my life back.

Feeling low. I know my vit D dose is due tomorrow, so some of it will definitely relate to that. So tired. So anxious... Sad... Scared... Tired... Frustrated... Sick. Everything hurts. I can feel almost normal after sufficient rest, but doing something as little as sitting up and eating puts me back into ME mode …

Kicking it old school: Payback is a b***h

One of the major difficulties with managing ME, is the way our bodies deal with any form of stress. It can sometimes be hard to predict how much Post Exertional Malaise (PEM) will knock us out. For me, my symptoms are usually roughly predictable as the symptoms on day 3 will equate to the symptoms …

Follow up on the bujo

Earlier this year I started tracking my symptoms, triggers, and activity in a simple Bullet Journal. After about a month of tracking I decided to have a look for patterns. I took my raw data and entered it all into an MS Excel Spreadsheet. Next, I added up the total values of the groups and …

What it’s like to be me, living with ME/CFS

If you’re interested in what it’s like to live with CFS/ME then this might be a useful read. Fair warning though, it is Loooong. This is part of the appeal submission when my Disability Benefit (SLP) application was declined. The full appeal document was over 10,000 words long. I’ve edited it, added bits that I …