What is M.E.?

Taken from http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ with my additions in italics

M.E. stands for Myalgic Encephalopathy and is also known as Chronic Fatigue Syndrome, Post-Viral Fatigue Syndrome and Chronic Fatigue Immune Dysfunction Syndrome.

Commonly, a previously fit and active person finds their illness triggered by an infection. Less common triggers include toxins, organophosphate pesticides, vaccinations, major trauma or stress (e.g. a road traffic accident), pregnancy and surgical operations.

In some cases there is no obvious precipitating event and the person reports a gradual decline in health over a period of months or even years. This is what happened to me, I did have a bad virus and food poisoning when I was about 13, then long-term antibiotics at 14, life got pretty stressful for me and I started having symptoms of low blood sugar (fainting, dizziness), bad headaches and leg pain. I had lots of tests (all negative). By 16 I was getting more stressed about my life, what was wrong with me and I could no longer play sport because of the pains in my legs.  I had my crash during my GCSE mock exams that year, had lots more tests (all negative) and was finally diagnosed with M.E. (absence of any positive diagnosis). 

The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity. The full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity (assuming, of course, the person was not already in a ‘recovery period’ from a previous activity).

The other main symptoms are:

  • Muscle symptoms include exercise intolerance and post-exertional malaise (i.e. feeling shattered the day after undue physical activity), pain (present in around 75% of people) and fasciculations (visible twitching of the muscles which sometimes includes eyelid twitching). I’ve had a lot of very scary muscle spasm episodes where my whole body goes into such severe spasm I find it hard to breathe. I’ve been to A&E a few times with this one and had lots of brain scans and a rather nasty epilepsy test.
  • Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention), clumsiness, disequilibrium likened to ‘walking on rubber’, and word finding abilities. Problems with control of the autonomic nervous system results in palpitations, sweating episodes and symptoms associated with low blood pressure/postural hypotension (e.g. fainting). The cognitive dysfunction is often misunderstood, but it is one of the most frustrating things! It can also be quite funny for onlookers when you’re trying to put a cereal box into the fridge and wondering why it won’t fit!
  • Symptoms which suggest on-going abnormalities in immune system function include sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings. This sucks, I just feel like I have flu all the time!
  • Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep), alcohol intolerance (a very characteristic feature, particularly in the early period of illness) and irritable bowel symptoms. Yep, I can’t sleep, or if i do I have very vivid dreams and I get very drunk very fast! Awful hangovers! Actually M.E. feels like a constant hangover. And IBS lead to me developing an eating disorder as well.
  • Some people also develop emotional lability or mood swings and features of clinical depression as time goes on. Yep, certainly developed depression, then anxiety and an eating disorder and I struggle a lot with mood swings as any of my long-suffering loved ones will attest to!
  • Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. Not everyone experiences all of them and often they are not mentioned when patients describe their illness; however there is often very visible relief when they find others, too, have similar experiences. That’s why its good to talk 🙂

ME/CFS symptoms tend to fluctuate in severity throughout the course of a day and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). Relapses or exacerbations are often precipitated by infections, excessive physical or mental stress, general anaesthetics and surgical operations, and extremes of temperature. Basically anything out of the ordinary then! 

Prognosis:

Most people with ME/CFS fall into one of four groups:

  • Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small. I’m hoping this will be me!
  • The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events. At the moment this is me, I was diagnosed in 2008, but have been ill since 2006
  • A significant minority, who remain severely affected and may require a great deal of practical and social support.
  • A few, who show continued deterioration, which is unusual in ME/CFS.

I hope this helps you to understand a bit more about M.E. It is a very complicated illness. In fact the Optimum Health Clinic call it a process instead, and that process is different for everyone. There is no treatment that doctors can prescribe, it is a case of finding your own way through. Finding my way through illness is what I write about in this blog.

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