If you need to know what Fibromyalgia (FMS, FM, Fibro) and Chronic Fatigue Syndrome(CFS, but not CF) are, you'll find basic information on the website belonging to my local CFS/ME society which contains some information sheets with the basic details about Fibro/CFS on it. Pages like that - with basic information - are certainly necessary, but there are already an awful lot of them around so I decided to write something different.
This site only has one page on it with basic information - this one - the rest of the site has two purposes:
- To share parts of my journey with CFS and FMS with other sufferers
- And to offer more 'advanced' information to those who want it.
Open Letter
One of the most important articles on this site is An Open Letter To "Normals" ... things I'd like you to understand about me before you judge me.
About ME/CFS
With a name like "Chronic Fatigue Syndrome", it would be natural to assume that CFS is similar to "Chronic Fatigue" ... that it's a fancy name for being tired all the time. This is absolutely and completely untrue!
"Chronic Fatigue" is a syndrome, and it exactly what it sounds like - fatigue, or tiredness, that is chronic, or persists for a long time. But "Chronic Fatigue Syndrome" is a totally different thing. CFS is a disease in itself, and a very serious disease - sufferers are regularly bedridden for years on end, unable even to walk, sit up or even use a wheelchair, and in extreme cases, CFS can cause death.
Chronic Fatigue Syndrome is also known as Myalgic Encephalomyelitis, or ME. It is a severe and sometimes progressive condition, with its symptoms mostly caused by neurological (brain), cardiac (heart), immunological (immune system) and endocrinological (hormones and glands) dysfunctions.
CFS/ME is recognized by the World Health Organization, and has been since 1969. The WHO, which classifies all diseases according to their type, lists CFS and ME as the same condition, one that's a neurological disorder, with the code G93.3 in its classification system, which is known as the ICD-10.
In recent years, there have been many claims that CFS is a psychological disorder. The reasons for this are complicated, and too detailed to go into here. For the purposes of this website, just remember that when I use the term CFS, or ME/CFS, or ME, I am speaking of the severe physical disorder described above, and not a psychological or psychiatric condition.
If you are interested in following up the reasons that the disorder CFS has been "hijacked" by people wanting to re-define it as a mild psychological disorder, one which can be cured by exercise and/or therapy (which is completely untrue for the ME/CFS I discuss in these pages), you may wish to read an excellent document entitled What Is CFS? What Is ME? It's fairly dense reading, and not up-to-date since it was written in 1991, but it's the best and shortest description of the whole drama I have ever read. If you are seeking an even more in-depth analysis of what happened, I suggest a book by Hillary Johnson called Osler's Web: Inside The Labyrinth Of The Chronic Fatigue Syndrome Epidemic. Again, it's a fairly dense book, and at 736 pages it'll occupy your bedside table for many nights, but in my opinion it's well worth the effort of reading it - you will never think of CFS in the same way again.
