What is M.E?


Myalgic Encephalomyelitis (M.E) is a debilitating and complex multi-system neurological illness that affects the brain and muscle function, but can affect other body systems as well. It is not 'just tiredness' as many people think. It affects around 250,000 people of all ages in the UK, but everyone will have a slightly different experience of M.E as not everyone will have the same symptoms or severity. Some people have setbacks or relapses, other people are more stable. It is a chronic illness which means it is persistent and long-lasting.

The exact cause of M.E is unknown, however there is a theory that some viral or bacterial infections such as glandular fever can trigger it. Other suggested triggers include traumatic events (such as an accident), hormone imbalance, psychiatric problems (stress, depression, mental exhaustion or emotional trauma) and issues with the immune system. For some people, the trigger is clear and they can pinpoint exactly why and when they became unwell. For others, it may be the repetition or combination of these factors which caused them to become unwell, so their symptoms may have worsened gradually over time. Occasionally, it seems to come "out of the blue".

The current understanding from research is that the immune, nervous and endocrine systems of the body are likely to be involved in M.E. It may be possible that there is a genetic pre-disposition of developing the illness. When someone develops M.E, their external appearance generally does not change, and the person may not have any obvious signs of an illness so it is considered an "invisible illness". This sometimes leads people who do not know anything about M.E to assume that it is a psychological condition, when in fact, it is recognised physiological illness.

With M.E, the body's systems are said to have become poorly regulated and hypersensitive. The body is in constant state of "high alert".

M.E is a fluctuating illness. Some days you might have a better day and you feel like a normal person. Some days may be so bad that you cannot even make it out of bed. Symptoms and their severity can vary throughout the day, from day to day, from week to week and from month to month. These symptoms can also vary quite suddenly, leading to a rapid deterioration of health.

The main symptom of M.E is extreme mental and physical fatigue that;
- is new
- keeps coming back or that you feel all the time
- isn't because of any other illness
- means you can't do anywhere near as much as you used to
- often doesn't come on until a day or two after you've been busy and then takes ages to recover (called post-exertional malaise)

It is accompanied by a range of other symptoms including but not limited to:

Neurological signs and symptoms:
- Inconsistent central nervous system function
- Dizziness and balance problems
- Temperature dysregulation and poor tolerance for hot or cold environments
- Sensitivity to sound, light and vibration
- Sensory storms or overload
- Visual disturbances
- Sleep disturbances

Vascular and Cardiovascular Signs and Symptoms:
- Heart palpitations
- Chest pain or pressure
- Rapid heartbeat (tachycardia)
- Very low blood pressure when upright (Postural orthostatic tachycardia syndrome P.O.T.S)
- Light headedness and fainting

Cognitive and Emotional Signs and Symptoms:
- Difficulty making new memories or retrieving formed memories
- Impaired concentration
- Word finding difficulty, disjointed speech, word reversal, word blindness
- Delayed speech comprehension
- Difficulty with basic maths
- Difficulty writing or comprehending text
- Altered perception of time, feeling spaced out, cloudy or not real
- Inability to organise, make decisions or form conclusions
- Depression
- Anxiety and panic attacks
- Irritability

Muscular Signs and Symptoms:
- Widespread muscular and joint pain
- Muscle weakness
- Muscle twitching and uncontrollable spasms
- Difficulty breathing
- Atrophy of muscles

Other Signs and Symptoms:
- Headaches and migraines 
- Frequent sore throats
- Tender and swollen lymph nodes (glands)
- Low grade fevers
- Odd sensations like pins and needles or numbness
- Alcohol intolerance
- Food, drug and chemical allergies/sensitivities 
- Gastrointestinal issues such as nausea, IBS and poor digestion

There are no medical tests for M.E which means a diagnosis can take a long time. It is often called a "diagnosis of exclusion" as extensive blood tests are used to rule out any other underlying conditions that have similar symptoms to M.E. Blood tests usually come back normal for patients with M.E. A diagnosis is only made if the patient's symptoms match an internationally agreed set of criteria. The criteria states that the patient needs to have experienced fatigue for at least 6 months before an official diagnosis can be made, so a provisional diagnosis may be given.

There is no cure for M.E. There are some definitive therapies such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET). There is controversy around these treatments but they can help regain a little normality. Some patients may need pharmaceutical remedies to help with specific symptoms, such as pain, nausea and GI symptoms. But because it is common for patients with M.E to have drug sensitivities, it can be difficult to find one that is suitable. Research in this area is limited and usually non-pharmacuetial options are tried first.

It has taken such a long time to write this as at the moment, I can only sit on my laptop for short periods of time as my concentration has been pretty poor recently.
However, I hope this has been informative to those people who ask me about my illness and those who are seeking more information about M.E. 

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  1. Great first post hun! Really clear and well explained xx

    1. I'm getting there slowly! Thank you for the support, means the world <3