About ME/CFS
What is ME/CFS
ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is a long-term condition with a wide range of symptoms, the most common being extreme fatigue.
Long Covid is being recognised as a ‘Post-viral Fatigue Syndrome’ similar/the same as ME/CFS that is triggered by the Covid-19 virus.
It is called Post-viral Fatigue for usually the first sixth months before it is chronic and then called either ME/CFS.
The condition affects each person differently, while one person may struggle with a particular symptom, another might not suffer from it at all. The severity of ME/CFS can also vary, with some being able to work and lead a somewhat active life. At the same time, others are housebound or even bedridden.
Since this is a long-term condition it can affect many areas of a person’s life, they will face many challenges and find themselves having to make adjustments. From using mobility aids, working less or giving up their job completely and having to rely on benefits and more.
Causes
The cause of ME/CFS is not well understood and is still being studied. It is mostly triggered by infections, the person developing the condition after getting better from a viral or bacterial infection. Other ways include :
Genetics. The condition appears to run in some families, so some people may be born with a higher chance of developing the condition.
Physical or emotional trauma. There have been cases of people who have experienced an injury, surgery or high emotional stress shortly before their symptoms started.
Problems with energy usage. Some people with the condition have problems converting the body’s fuel, primarily fats and sugars, into energy.
Diagnosis
There is currently no specific test for ME/CFS. Diagnosis is based on your symptoms and ruling out all other conditions that could be causing the symptoms. Due to this, diagnosing the condition can be difficult even time consuming.
Your GP is most likely to do a thorough medical examination and testing to rule out possible conditions. These may include fibromyalgia, thyroid problems, anemia, Lyme disease, lupus, MS and more.
Usually a diagnosis of ME/CFS will be considered once other conditions have been ruled out or if you do not get better as quickly as expected.
There is also the possibility that you could have ME/CFS plus another condition/s. Many people with ME/CFS have mulitple conditions. For example, both that of fibromyalgia and depression can be commonly found in people who have ME/CFS.
Symptoms
ME/CFS affects multiple body systems, so it would probably be quicker to say what symptoms you can not have. People usually experience several symptoms, the severity can vary over time alongside what symptoms they suffer with. They can find themselves going years without ever having a particular symptom for it to start appearing later on. Or even one disappearing. The most common symptoms are fatigue, pain, sleep and cognitive problems.
Fatigue – Fatigue is a deep exhaustion that can not be lessened with sleep or rest. The severity of the fatigue can vary from person to person and also from one minute to the next. Activity, whether low-level or not, can worsen the fatigue. Doing too much can cause a setback making one’s energy levels even lower and worsening symptoms for anywhere from 12 to 48 hours or longer.
Aches & Pains – This can be anywhere on the body from the joints or more commonly as an overall body ache/pain. This can be intensified by overactivity, lack of sleep/rest, anxiety, stress or even changes in the weather.
Sleep Problems – There are many problems a person with ME/CFS can have with sleep. Not only can it be nonfreshing but the person could struggle with falling asleep, waking up through the night or/and getting up the next day.
Cognitive Problems – Most people with this condition experience cognitive difficulties, often called ‘brain fog’. This can include feeling confused, difficulty concentrating, struggling with words/speaking and memory problems. To help with brain fog try reducing your activity, getting more rest/sleep, managing stress and limiting sensory input.
Other Symptoms – Headaches, sore throats, dizziness, sensitivity, sinus/nasal problems, abnormal temperature sensations, weight changes, depression, allergies and more.
Treatment
Unfortunately, there is no cure or effective treatment for this condition and full recovery is very rare. Due to this treatment is more the case of trying to control the symptoms and improving energy levels.
Symptoms can stabilize and/or improve over time with careful management of balancing activity and rest. Some people find particular things help them in improving their condition whilst others find the same thing can worsen their symptoms.
Since there is no common thing/medication that helps each and every person, there are many experiments to find out what works for each individual. There is also the case that over time something that once helped no longer works.
The best thing for ME/CFS is to manage the condition as best as you possibly can. Try to get into a routine with your sleep, having daily rest periods, make sure not to do too much at one time. Overtime once you find a nice balance and feel like you could do more, try to make some tiny changes by either increasing your activity or shortening a rest period.
ME/CFS is a juggling act and there will be periods when your condition could become worse due to stress, getting a cold/bug etc. Some find keeping a diary of their activity and rest periods helps them. If you have a setback a diary can show you where you might have done too much or too little.
You could use a notebook to track, an app of some kind or even search online for ‘ME/CFS diary sheet’, doing so brings up an collection of different types of printable sheets you can use to track your day to day, symptoms, sleep and more. Or go to our ‘Downloads’ page for various diary sheets Nightingales have created for our members to use.
More Information
ME/CFS Support
Links to websites with information, support & more.
Downloads
Download our ME/CFS Info Booklet, Diary Pages & more.
Nightingales Forum
Join our free forum to read up on additional information and chat with others.
~forum coming soon~