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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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How did this happen?


Senior Member
Melbourne, Australia

I daresay if one did the right google search, one would come up with the answer.

I was trying to find the history behind Fibromyalgia some 15 months ago, and came up with the following on the history of fibromyalgia:

Although the term Fibromyalgia was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times.

Following is Job's vivid description of his physical anguish: "I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, 'When will it be morning?' But the night drags on, and I toss till dawn....And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones." (Job 7:3-4, 30:16-17 - NLT).

Another well-known person who reported fibromyalgia-like symptoms was Florence Nightingale, an English army nurse during the Crimean War (1854-1856) who was a pioneer in the Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibomyalgia until her death in 1910.

This mysterious illness has been studied since the 1800's and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. (Fibro - meaning fibrous tissue, my - meaning muscle, and algia - meaning pain).

It wasn't until 1990, when the Amercian College of Rheumatology developed a diagnostic criteria for doing fibromyalgia research, that the term fibromyalgia gained wide usage.

I have an old school book of Florence Nightingale's life written by Cecil Woodham-Smith & from what I could gather she never lectured or appeared in public after the age of 35. When she did go out, she was carried in a chair by some of her faithfull war soldier followers. As she died at the age of 90, she must have been largely housebound for most of her later life (something like 55 years).

Victoria :)


How did ME/CFS sufferers ever get stuck with Chronic Fatigue Syndrome? Its such a lame moniker

It's lame on purpose - to stigmatize the wearer - to make it invisible in terms of medical seriousness - yet generic enough to 'blend in' into society.
Anyone can claim to have CFS and/or anyone can be diagnosed with it- thus it was selected.

If CFS has been something as terrible as HIV - which ironically XMRV may well be - then CFS would have been no laughing matter. It's just that the criteria for diagnosis are a total joke - making CFS a total joke.

The psychs continue to say the Canadian criteria for ME are 'not helpful' (Professor Peter White - Psychiatrist), yet of course not only are the Canadian criteria useful - they are vital. Hence the WPI used them in their study to make sure the patients they are dealing with most likely do have ME (CFIDS) or 'CFS'. Hence this terrifies the psychiatric lobby and CDC. Very sick people turn up and suddenly all test positive for XMRV this way.

This was never meant to happen to 'their' CFS. The CFS treated with CBT/GE/Pacing/Exercise/Prozac.