About The Mansion

This post is about my short story The Mansion.

I wrote The Mansion to illustrate the plight of those with ME/CFS. It is partly a fictionalised version of my journey with “moderate” ME/CFS and partly inspired by the many stories I’ve read of people with “severe”/“very severe” ME/CFS.

ME/CFS

ME/CFS (Myalgic Encephalomyelitis Chronic Fatigue Syndrome, also known as ME or CFS) is a complex disease that is poorly understood both by the medical community and by the general public.

ME/CFS is about as common as rheumatoid arthritis but while that is a fairly familiar disease, most people would struggle to explain what ME/CFS is and how it affects people. At best, they’ll say it means that patients get tired easily and while that is not wrong, it is a long way from the full picture.

Here are some of the symptoms that people with ME/CFS can experience:

  • Debilitating fatigue
  • Post Exertional Malaise - a worsening of symptoms that occurs after activity of any kind
  • Unrefreshing and/or disturbed sleep
  • Cognitive problems
  • Orthostatic intolerance - dizziness, fainting, and other problems when standing or sitting up
  • Sensitivity to light, sound, touch, or smells
  • Temperature sensitivity
  • Flu-like symptoms - aches and pains, chills, sore throat, swollen glands
  • Neuromuscular issues such as twitching muscles
  • Intolerance to alcohol, caffeine, or certain foods or chemicals
  • Pain

ME/CFS gives an extremely poor quality of life. Worse than cancer, stroke, or depression.

ME/CFS quality of life compared to various other diseases Image from Wikipedia, using data from Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L (2015) The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS ONE 10(7): e0132421. doi:10.1371/journal.pone.0132421

While there are more people with ME/CFS than brain cancer, multiple sclerosis, or HIV/AIDS, the amount spent on research per person is a tiny fraction.

ME/CFS affects more people than many major diseases but receives loewr funding

For many years ME/CFS has been dismissed as a psychosomatic or psychological problem. There is now enough evidence to the contrary that this position is indefensible, though ignorance and stigma about the disease still abound.

It is a very real disease that needs real support and research into the phsyical causes.

You won’t see people with ME/CFS parading through the streets or marching on parliament to raise awareness because they can’t - they have ME/CFS!

If you would like to help then please share my story, talk to people about ME/CFS, post on social media. All of that stuff. But also please consider donating to one (or all!) of the following (in no particular order):

For a thorough guide to ME/CFS see https://knowmecfs.org

Created
April 2026