Today is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.
The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases). Mr Hennessy was based in the US but understood that it needed to be
an International event.
May 12th was chosen as it coincided with the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.
Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International 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 fibromyalgia until her death in 1910. Even though Nightingale was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Her previous work, and that after she became ill, led to her being the first women to get the British Order of Merit.
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:
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)
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. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain.”
Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.
Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years, fibromyalgia was thought to be a psychiatric or psychosomatic disorder.
Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.
Fortunately, this century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)
Until very recently, May 12 Awareness efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organisations, the awareness efforts have, for the most part, focused on only one of the illnesses. For example; this site, together with my Facebook page, Twitter and LinkedIn profile, as well as LIVING WELL with FIBROMYALGIA has been focused on Fibromyalgia (obviously!).
- From the beginning in 1993, various ME/CFS organizations were behind the idea. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
- Efforts by Fibromyalgia organizations took a little longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
- In Canada, through the efforts of the then newly founded (June 1993) National ME/FM Action Network, May 12th has been an Awareness Day since 1994.
- Some organizations have an International ME/CFS Awareness Day (May 12), others have a week still others, such as the newly formed European ME Alliance which includes 9 European countries, use the whole month of May.
Hopefully, one day this history of fibromyalgia will be just that – past history.
MILESTONES IN FIBROMYALGIC HISTORY
- 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
- 1816 – Doctor William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
- 1824 – Doctor Balfour described tender points.
- 1904 – Sir William Gowers (right) coined the term fibrositis (literally meaning inflammation of fibres) to denote the tender points found in patients with muscular rheumatism.
- 1972 – Doctor Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
- 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
- 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
- 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
- 1987 – The American Medical Association recognised fibromyalgia as a real physical condition.
- 1990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes. The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
- 1990s – The concept of neuro-hormonal mechanisms with central sensitization was developed.
- 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia. This was the first drug ever to receive FDA approval for fibromyalgia. (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)