I wanted to take some time to write about Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME). I hope that this will be useful for those who are newly diagnosed to learn a little about their condition or to share with family members who want to know more.
What should I call this illness?
There are many names this illness is known as:
- Systemic Exertion Intolerance Disease (SEID)
- Post-Viral Fatigue Syndrome (PVFS)
- Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
- Chronic Fatigue Syndrome (CFS)
- Myalgic Encephalomyelitis (ME)
I think the reason this illness has so many names is because it is very difficult to explain and none of them really cover what the illness truly is / how seriously it can affect people. For the sake of consistency, I will refer to the illness as CFS / ME as this seems to be the most universal preference, however I think every individual should refer to it by the name they are most comfortable with.
What are the symptoms of CFS / ME?
Where do I start? There are a lot of symptoms for CFS / ME. The primary symptom is of course fatigue. Fatigue is not the same as feeling sleepy or tired. The best way I can describe it is to imagine being awake for over a day unable to sleep but even when you do get some sleep you don’t automatically feel less tired. Your brain feels fuzzy, it can be hard to think clearly or find your words and you can encounter memory problems. This is often called “brain fog” as it’s like trying to think through a thick fog in your mind. It can then cause dizziness, instability when standing or walking as well as blurred vision.
In addition to fatigue based symptoms, many people with CFS / ME experience pain in the body, in joints or muscles, have headaches, general flu symptoms, difficulty controlling your body temperature (finding it hard to stay warm or cool down – going hot and cold), insomnia, nausea and depression. There are many more symptoms as the illness is experiences differently for everyone. As the fatigue puts a major strain on your body, this can cause negative effects on any part of the body.
Does CFS / ME affect people differently?
Absolutely! There are individuals with CFS / ME who are able to continue working full-time right through to those who are bed bound or in a wheelchair (and everywhere in between). Some individuals also experience periods of being healthy followed by relapses into poor health. Unfortunately, there is no way to predict how any one individual will react.
Some medical personnel separate into three categories:
- Mild: able to care for yourself but sometimes needing extra days rest
- Moderate: experiencing reduced mobility with a variety of symptoms and often needing to sleep throughout the day. Unable to maintain full-time work
- Severe: only able to carry out minimal tasks such as making a cup of tea or brushing teeth with significantly reduced mobility or bed bound. Not employed
What causes CFS / ME?
We aren’t sure. Thankfully more research is being done to try to identify a cure and hopefully with that, a cure. The most common theories being that a virus at the start of illness can cause a malfunction in the immune system or that it may be a neurological illness that simply occurs in some people for no specific reason.
How is CFS / ME diagnosed?
Currently there are no specific tests for CFS / ME. Scientists are hoping to identify a DNA marker that could lead to a much speedier and easier diagnosis. Until then the only way to diagnose is to first rule out other illness which can be tested for and then assess the symptoms to determine whether they meet the diagnosis of CFS / ME (usually this is done by a neurologist or a specialist team).
Can CFS / ME be cured?
Sadly, there is no cure. However, I am hopeful that a cure will be found. There is a lot of promising research lately and more money is starting to be put into research in countries like Germany, Norway, the UK and the USA.
How is CFS / ME treated?
There are a number of treatments, which may be used for CFS / ME, however it isn’t an easy illness to treat and some of these may or may not help each individual:
- Pacing: learning to understand your limitations in terms of energy and live within them. For example, ensuring to take regular rests, knowing that a 5 minute walk will be okay but a 10 minute walk will cause a flare. The idea is to break the “boom and bust” – doing too much when you feel better, causing a sudden dip in energy then resting up and feeling better, only to repeat the cycle
- Pain management: use of medications, acupuncture, massage therapies etc. to manage the pain caused by the illness
- Medication: in addition to pain management, other medications are used to manage insomnia, nausea, depression and muscle spasms
- Graded exercise therapy (GED): there is a lot of controversy around GED and whether it is a good idea but some medical professionals do use it as a treatment. The idea is to slowly increase your activity to try and be able to do more and suffer with less fatigue. As I said, it’s controversial as many people feel this makes their illness work. Personally I do not agree with it but we should each make our own decision
- Cognitive behavioural therapy (CBT): as with many illnesses, negative thought patterns can have an impact on symptoms and fatigue in particular is made much worse by depression / negative thought patterns / anxiety (think how tired you can feel after a traumatic time or a good cry – now imagine it with existing fatigue, you can see how it causes a problem?) CBT works to change that negative thinking and help you to help yourself maintain balance
- Maintaining good health: maintaining good health otherwise will often help you control or minimise your symptoms, Many doctors will advise that you stop smoking, lower your alcohol / caffeine intake and manage your weight / eat healthily (a good intake of vitamins, not too much fat sugar etc.)
Your doctor will be able to advise on the above and work with you to manage treatment with you in order to gain some control of the illness.
Is CFS / ME life shortening?
It’s hard for us to know, but all the information we have so far suggests no, CFS / ME does not shorten your life. Of course, more studies are needed in order for us to learn more. As long as you monitor your symptoms and continue to report anything unusual to your doctor to ensure any additional illnesses aren’t missed, then you shouldn’t worry that CFS / ME will cause you to pass any earlier.
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I really hope this gives some more insight into CFS / ME. Please do feel free to share with friends who might be suffering or those who you feel might like to read a little more and learn about how your illness affects you. If you suffer with CFS / ME and have questions or need some support, why not use the link on the top bar to visit our forum and discuss your queries / worries with us?