Myalgic Encephalomyelitis is a mouthful so you will hear most people refer to it as ME or CFS (Chronic Fatigue Syndrome). There is a debate running about the correct term to use so here we will refer to it as ME/CFS.
ME/CFS affects people of all ages with recent studies showing that around 250,000 people in the UK suffer with the condition.
ME/CFS presents with a wide array of symptoms including,
- Severe and debilitating fatigue
- Muscle cramps and spasms
- Joint pain
- Sensations of dizziness
- Flu like symptom
- Sore (unswollen) glands
- Disordered sleep (both too much and too little)
- Cognitive disturbances such as lack of concentration and poor memory
- IBS like gastric symptoms
The severity of symptoms can vary from day to day, or even change several times within a day. Some people manage to cope within their boundaries whilst others are house (or even bed) bound. No two cases of ME/CFS are the same though many people report that over exercising makes their symptoms worse.
It is unsure what causes ME/CFS, it may have developed after a particularly nasty viral infection or a stressful incident such as an accident or an operation, or it may have simply crept in slowly, symptom by symptom.
As with FND, Fibromyalgia and a host of other conditions, there is no hard and fast test for diagnosing ME/CFS, so your GP will conduct other tests to rule out other causes, take your medical history and a catalogue of your symptoms in order to diagnose. It may take some time to receive this diagnosis as the symptoms of ME/CFS closely mirror those of many common illnesses which tend to improve without medical intervention (flu etc), so the delay in getting better will contribute to your diagnosis.
As with FND and Fibromyalgia, there is no straight forward method of treatment that can cure the condition. It is far more likely that your GP will treat the individual symptoms to alleviate their impact. Usually, they begin by trying to alleviate pain, disordered sleep, dizziness, and cognitive issues. Some doctors may still treat cognitive problems with stimulants, but most specialists recommend avoiding the use of these because they can actually cause an increase in fatigue.
An early diagnosis, together with plenty of rest during any flares and relapses, appears to bring the most significant improvement.
Living with ME/CFS can be incredibly difficult depending on the individual symptoms. Flares or relapses can often occur as a result of infections, operations, temperature extremes or stressful events. The condition is like a vicious cycle, the Chronic Fatigue element can require prolonged periods of sleep and rest whilst the physical symptoms can cause this to be incredibly difficult to achieve, leading to isolation and low moods. It is incredibly important to keep an eye on your moods in order to flag up and changes in emotional responses to daily occurrences.
REMOVING THE STIGMA
As with FND before it, it has been previously posited that fatigue is psychosomatic; that it’s caused by depression, or the way a person thinks. However, recent findings have started to suggest there are links to an imbalanced microbiome (bacteria in the gut), in other words it can be linked to IBS and abnormal levels of gut bacteria. Research into ME/CFS is still ongoing, with advances in the last couple of years meaning that they’re getting ever closer to a breakthrough on this, proving that the cause is physical not mental, so that sufferers can finally get the right treatment.
For further information, visit the ME Association.