The sequence is almost always the same: A person recently diagnosed with or suspecting they have myalgic encephalomyelitis finds the relevant groups and bubbles online, describes how they feel terrible all the time, and asks what they can do. The…
Fellow sufferers and other people who know the illness myalgic encephalomyelitis may have noticed something missing from this blog: the three letters CFS. This is a very deliberate omission on my part. To understand this, one has to again look…
Which chronically ill person has not heard this, or received it as a comment on social media? You post a 280-character text on social media, and someone comments: “You can be online, so you can work from home!” When I…
Spoiler: I did not! I may write a dedicated post in the future about the history of myalgic encephalomyelitis and how it has been framed as psychological. For now, the short version is this: a faction within medicine still believes,…
I generally try to keep this blog on the scientific side, even the musings, and personal anecdotes are just that: anecdotes used to make a point. This will be more of a rant, but it does serve a purpose: to…
Pacing in the context of myalgic encephalomyelitis is the management of activities and the body’s resources in such a way that post-exertional malaise (PEM) is prevented. The concept is also used in other energy-limiting illnesses such as POTS, MS, cancer-related…
When I was a mountaineer, I often imagined what might happen if I had a bad accident on the mountain. My worst-case scenario was ending up paraplegic, losing an arm or a leg, shattering my hips, or something like that.…
Together with hope and acceptance, positivity forms the triumvirate of most misunderstood terms in chronic illness spaces and in society. In chronic illness forums, people share their ups and downs, their wins and defeats. I have noticed that when someone…
Early in the SARS-CoV-2 pandemic, the WHO said things like “Most people will experience mild symptoms,” meaning they will not require hospitalization. Most people, when thinking about a “mild” illness, probably imagine something annoying, but not really limiting. A mild…
I have to preface this text by saying: I strongly object to narratives like “Everything happens for a reason” or that having one’s life destroyed by a chronic illness “teaches you something”. That is toxic positivity and serves only to…