Introducing. . .

The Site:

Were I intend to talk about my syndrome and how it continues to affect my life, and provide accurate information in a not-too-scary or overwhelming way. (Hence the slightly goofy theme!) This project is for me as much as anyone who stumbles on the site: as I create it I aim to solidify my own knowledge as well as anything new I learn by presenting it in a way that will be understandable and helpful to others. My hope is that this will raise awareness, become a source of decent, easily-accessible information, and might even help a few people.

The person:IMG_6553_cut.jpg

Me. Someone as like and unlike anyone else, made up of various and sometimes conflicting personality traits. I enjoy reading, gardening, and most things creative. I live in the south of England, and I am a writer. As a child I was diagnosed with Post Viral Chronic Fatigue Syndrome, which brings us to. . .

 

The condition:

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), post viral syndrome (PVS), systemic exertion intolerance disease (SEID), and various other names across the world. Some people argue that the different titles have slightly different meanings, but I was once told that the name you are given mostly depends on the doctor who diagnoses you. For the purposes of this blog I will use the term ME/CFS as being the most acceptable at present.

This is a non-diagnosis, which means that the condition can’t be tested for directly but is diagnosed once other causes have been ruled out. Symptoms must also persist for several months before a diagnosis can be given.

Each sufferer will be affected in a different way and to different degrees, however the most common symptoms include:

  • Fatigue – persistent physical and mental exhaustion that isn’t improved by rest
  • ‘Brain fog’ – poor short term memory and concentration, difficulty organising thoughts and finding the right words
  • Pain – muscular, joint, severe headaches
  • Disrupted sleep
  • Sensitivity/intolerance to light, loud noise, alcohol, certain foods
  • Balance problems/dizziness
  • Difficulty controlling body temperature

There is no cure for ME/CFS and no specific treatment, although some lucky people do grow out of it or have the symptoms fade after a few years. Individual symptoms can be treated, however what works for one person may not work for another.