CFS/ME awareness week will run from the 6th – 12th of May this year.
What is CFS/ME?
Chronic Fatigue Syndrome (CFS) is also known as ME (Myalgic Encephalomyelitis).
CFS can affect anyone at any age and there are 17 million affected people worldwide – there are 250 000 cases in the UK alone.
After many years of patients being turned away and told that “it was all in their heads” or “yuppy flu” it is now widely recognised as a debilitating illness. It is even thought that Florence Nightingale herself suffered from CFS as historical documents note that while stationed in Crimea, she developed “Crimean fever” (brucellosis) and never recovered. She remained mostly bedbound the rest of her life. Historic medical journals suggest Charles Darwin and Marie Curie both may have suffered from what is known today as CFS/ME.
The World Health Organisation (2016) classifies ME as a disease of the central nervous system (G93.3) and The Department of Health officially recognises ME/CFS to be a ‘debilitating and distressing condition’ and more recently ‘recognises CFS/ME as a neurological condition of unknown origin’. Even the National Institute of Health and Care Excellence (NICE) in the clinical guideline for ME/CFS, state: ‘The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions’/ME places a substantial burden on people with the condition, their families and carers, and hence on society.’
It is still unknown what causes it although there are some indications that it can be triggered by infections (I.e. pneumonia or glandular fever), problems with the immune system, or hormone imbalances. There is some indication that some people may be genetically predisposed as it does seem to be more common in some families.
The tiredness experienced from CFS/ME is more than ordinary tiredness, the smallest of tasks (physical and/or mental) can cause prolonged and debilitating bouts of fatigue. CFS/ME affects each person differently and can even affect the same person differently on different days. Symptoms of CFS/ME can follow exertion immediately or may even be delayed by a day or two – this is known as post-exertional-malaise – and can also trigger a worsening of symptoms or a flare-up. Although the most characteristic symptom of CFS/ME is a severe and persistent fatigue or exhaustion most, or all of the time, there is a very long list of symptoms that can accompany it. Not everyone will experience all the symptoms, most people will have combination of them.
Some of the symptoms caused by CFS/ME can include but are not limited to:
- Feeling generally unwell: having flu-like symptoms
- Pain: aching muscles or joints, nerve pains or pins and needles, headache or migraine
- Sleep disturbance like unrefreshing sleep, difficulty getting off to sleep, waking for long periods in the early hours, hypersomnia (sleeping for a long time).
- Problems with concentration, thinking and memory (“brain fog”), such as: reduced attention span, short-term memory problems, speech and language problems, including word-finding difficulties, lack of concentration.
- Problems with the nervous system, such as: poor temperature control i.e. being sensitive to being too warm or too cold, dizziness, hyper-sensitivity to light and sound, sweating, balance issues.
- Digestive problems, such as: nausea, loss of appetite, indigestion
- Intolerance and increased sensitivity to: bright lights, noise, some foods, medication or alcohol.
In addition to the above CFS/ME can have a significant effect on a person’s mental health and emotional wellbeing.
Degrees of severity:
There are different degrees of severity to which CFS/ME affects people. CFS/ME is classed as mild, moderate or severe.
Someone with mild CFS/ME may look well and will still be able to care for themselves. They may still be working or in education, but to be able to do so they may have given up or drastically cut back on their leisure and social engagements. They may often take days off, or use the weekend to cope with the rest of the week. Moderate CFS/ME means someone’s mobility has been significantly reduced and they are not able to care for themselves independently. In most cases someone with moderate CFS/ME will have stopped work or school/university. A person with severe CFS/ME cannot perform any caring tasks for themselves or only very light ones i.e. brushing teeth, someone with severe CFS/ME may be bed and/or wheelchair bound.
Diagnosis and Treatment:
There is no specific diagnostic test for CFS/ME at present and it is diagnosed by ruling out other conditions that may be causing a person’s symptoms.
There is no cure for it and treatment for CFS/ME focusses around relieving symptoms.
Many of the lifestyle changes to help manage CFS/ME symptoms have a significant impact on quality of life. People with CFS/ME must “pace” themselves heavily to manage their everyday life meaning they can only do a certain number of things per day with the limited energy they have or “pay” for overdoing it with a flare of symptoms and increased fatigue that can last for days at a time. They may even have to actively choose between activities they “want to do” i.e. see a film or visit a friend with activities they “have” to do i.e. shower or work. This way of managing energy affected by a chronic condition has given rise to the term “spoonies” and is based on the Spoon Theory by Christine Miserandino.
CFS/ME symptoms can improve but may never go away completely. Some people do make a full recovery whilst others will continue to have symptoms and periods of flare -ups.
Lack of acknowledgement and general disregard of the genuineness of the illness for many, many years by the medical profession means that there has been very little in terms of research and funding for research and medical advancement in this field. It is only recently that movements such as Millions Missing have raised awareness of the dire need for funding and further clinical research into an illness that has affected millions of people and their families emotionally and financially. Even in its so-called mildest form, M.E. can have a significant impact on an individual’s life, and not just on their health. A lack of understanding and awareness about M.E. means people can experience disbelief, and even discrimination, from friends, family, health and social care professionals and employers.
For a better understanding of the everyday life of someone with CFS/ME you can watch the ground-breaking documentary UNREST by Jennifer Brea.
For further reading you can see:
Sources used: Action for ME, ME Association, NHS Choices, The Spoon Theory by Christine Miserandino, Raising Awareness for CFS – Celebrities with CFSME