What is ME/CFS?
ME is also called Chronic Fatigue Syndrome (CFS) OR ME/CFS. It is a long-term chronic illness with a wide range of symptoms (NHS). It is recognised by The Department of Health as a 'debilitating and distressing condition' neurological condition (recognised by World Health Organisation in 1996) (ME Association & MECFSAlliance). It should be noted that although ME/CFS sufferers appear healthy, they are in fact affected by a seriously disabling disease which is to this day still misunderstood and misdiagnosed. It manifests within the entire body including: central and autonomic nervous systems, immune system, cardiovascular system, endocrine system (glands), digestive system and musculoskeletal system (MECFSAlliance).
Symptoms:
The Symptoms of ME/CFS can vary fro, day to day or hour to hour. The symptoms of some other illnesses, so it is important to see a GP to get a correct diagnosis. Here is a list of symptoms:
General Malaise
feeling extremely tired all the time – you may find it very hard to do daily activities
still feeling tired after resting or sleeping
taking a long time to recover after physical activity
problems sleeping, such as waking up often during the night
Mobility problems
Chronic sore throat
Brain Fog - issues with thinking, difficulties in remembering, grasping and processing new information.
problems with thinking, memory and concentration
muscle or joint pain
Recurrent swollen and sore cervical lymph nodes
headaches
a sore throat
flu-like symptoms
feeling dizzy or sick
fast or irregular heartbeats (heart palpitations)
Blood circulatory disturbances known as Postural Orthostatic Tachycardia Syndrome (POTS)
Food allergy/intolerance or environmental sensitivity
Sufferers of ME/CFS find that stress, mental or physical overexertion are associated with Post Exertional Malaise (PEM) – worsening of the person’s own cluster of symptoms. PEM occurs when the patient engages in any basic activity which a well person would do without thinking. They usually appear to the outside world as coping, but then suffers an involuntary reaction as a result leaving them no choice but to retreat to their bed for days, weeks or even years depending on the patient’s level of severity (MECFSAlliance).
Finally, I want to finish with a note.
It is often very hard for anyone living with ME/Chronic Fatigue Syndrome and other chronic conditions. This is due to many factors: Able-ism, the condition itself and more. The condition can be extremely hard to explain and is often down-played by GP's, doctors, friends, family and more. This is a chronic condition, which means there is no cure and it is for life. More often than not, doctors don't know how to help people with this condition because the research has not been funded. Some doctors don't even believe in the condition. This can make anyone seeking help very anxious or frightened and has led to many, many, many traumatising events for chronically ill people, not just those with ME/CFS. Please always treat someone with this condition with kindness and empathy. We don't want pity, we don't want attention. We want help, we want you to understand the condition and our situation. We want you to support us when we are struggling to do things. This does not mean do it for us, it means help us find a way of doing it. Empathy, problem-solving, kindness and understanding will always make you a good support for someone with a Chronic Illness. This means making sure you're doing some research on the condition. If you've made it this far, you've made a great start on understanding their condition! Check out the sources below for more information.
Sources:
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