I actually have 5 diagnoses now:
M.E., which stands for Myalgic Encephalomyelitis,
PCOS (Poly-cystic ovary syndrome, or as I prefer its original name Stein-Leventhal syndrome, as it aint just ovaries, it’s a a system-wide endocrine disorder which affects the whole body, but defined by ovarian hormal dysfunction and cysts),
and the other IBS, irritable bladder syndrome, also known as Interstitial Cystitis – pain, urgency, and weakness just like ordinary cystitis, but not caused by an infection, but rather inflammation.
I’ve added helpful health links for all of these lovely diseases on the right here, but I wanted to talk a little bit about ME and Fibro, my twin diagnosis because I suspect they may to a certain extent umbrella the other conditions.
M.E. has been known at least since the 1950s when there were several outbreaks, the most famous of which being the outbreak amongst patients and staff at the Royal Free Hospital in London. Going further back, it is suspected that some Victorian characters such as Florence Nightingale were probably suffering from the same ailment, known then only as ‘Nervous Exhaustion’.
The 1950s outbreaks seemed to confirm that this ‘nervous exhaustion’ had a viral agent (that particular outbreak was originally considered to be a strain of Polio) and the name Benign Myalgic Encephalomyelitis was coined. Myalgic referring to muscles, Encephalo referring to the brain, and Myelitis referring to the nerves, all of which made it clear that we were dealing with inflammation of the brain and spinal column which led to the other symptoms. The word ‘benign was soon dropped. (Note it is sometimes referred to in the US as Post-Viral Fatigue Syndrome)
In 1969 the World Health Organisation classified M.E. as a neurological condition, and this has not changed.
In the 1980s however, something disastrous happened. Two psychiatrists wrote a completely unfounded paper suggesting that the Royal Free outbreak was nothing more than hysteria, and since the medical establishment had been unable to find a definite cause or confirm a single bacterial or viral agent of ME, this idea was seized upon, and from this point onwards Psychiatry moved to take over the ‘care’ of M.E. If you were around in the 80s I am sure you will remember it being characterised as ‘Yuppie Flu’. And then another disastrous thing happened – a name change from M.E. to Chronic Fatigue Syndrome, or CFS. From that point, the only significantly funded research into the illness was psychiatric in nature.
Thankfully, after people have died at the hands of such psychiatrists (see Sophia’s story, for example), and the recent PACE trial is being investigated as fraudulent in so many ways, the tide seems to be beginning to turn again. In America, yet another new name has been coined, SEID – Systemic Exertional Intolerance Disease. It’s not as accurate as the original Myalgic Encephalomyelitis, but it is certainly an improvement on the dreadful, inaccurate CFS. Here in the UK, it is currently being called ME/CFS or CFS/ME (and still, sometimes, CFS) but patients are noticing an increased tendency in some doctors using the original name of Myalgic Encephalomyelitis. That is to be welcomed, as it seems to signal a sea-change in the NHS finally being willing to acknowledge ME as a genuine, physical illness rather than an imagined one.
I am not sure about the origin of the term ‘Fibromyalgia’ – there is some controversy about whether Fibro and M.E. are the same thing. It would seem to be very much the luck of the draw/ what kind of GP you see as to whether you receive a diagnosis of M.E., CFS or Fibromyalgia. As my Rheumatologist pointed out, the symptoms overlap to such an extent that it is dubious that they are three separate diseases, and where Fibromyalgia emphasises pain, CFS emphasises fatigue, and M.E. emphasises neurological symptoms.
One more thing must be noted about CFS though. It has been a disastrous development to call M.E. ‘Chronic Fatigue’, because chronic fatigue can be caused by any number of different causes, from M.S. to depression. CFS is a ‘get out of testing free’ card for lazy doctors.
When I have some more energy, I will come back and add some links and references to this page.