Understanding Chronic Fatigue Syndrome (ME/CFS)
Myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), is a chronic condition. It can vary in severity between different people, but it often has an impact on a person’s ability to partake in normal daily activities. This condition is widely misunderstood and therefore has stigma attached to it. Learning more about ME/CFS and raising awareness of it can help dispel these misconceptions and erase the harmful stigma associated with the illness.
What is ME/CFS?
ME/CFS is a chronic condition that causes a variety of symptoms, most commonly consistent tiredness. According to the NHS, this illness more commonly occurs in women than men. It can develop at any age, including in children and the elderly. However, it typically begins in adults between the ages of 25 and 45. Living with ME/CFS can be debilitating and may impact all areas of a person’s life. For example, it may impede a person’s social interactions, finances, work, schooling, mental health, and physical mobility.
ME/CFS causes, symptoms, and treatment options
The causes, symptoms, and most suitable treatment options for ME/CFS can vary between individuals.
There’s no definitive cause of ME/CFS, but experts have developed theories regarding its origins. The potential causes of ME/CFS include:
- Viral and bacterial infections
- Immune system irregularities
- Imbalanced hormones
Symptoms of ME/CFS are similar to the symptoms of other illnesses. The severity of symptoms can vary from mild to very severe. The most common symptoms of this condition can include:
- Severe and chronic tiredness (even after resting)
- This is the most common symptom and often prevents people from fulfilling their normal activities.
- Long recovery time from any physical exertion
- Sleep difficulties
- This often involves difficulties with staying asleep.
- Cognitive difficulties
- This can include areas like memory, concentration, and thinking.
Less common symptoms of ME/CFS include:
- Flu-like symptoms
- This may occur in the muscles or joints.
- Sore throat
- Heart palpitations or other heart rate irregularities
There is no definitive cure for ME/CFS, nor is there a specific test designed to identify it. Instead, it’s diagnosed by ruling out all other conditions that could be causing symptoms. Once a person gets their ME/CFS diagnosis, they can begin exploring various treatment options that aim to help manage their symptoms. These treatment options include:
- These are often aimed at reducing or eliminating symptoms like sleep difficulties and pain or discomfort.
- Energy management
- This involves advice from medical professionals about the best ways to use energy without worsening any symptoms.
- Talking therapies
- Despite it being a physical illness and not a mental illness, many people with ME/CFS benefit from cognitive behavioural therapy (CBT). This may be due to the mental health issues that this condition can cause from its debilitating nature.
With treatment, many people’s symptoms can improve. This is especially true of children with ME/CFS. However, some people’s symptoms continue to worsen over time. This group of people may end up home-bound and completely unable to return to normal activities. Others have periods where their symptoms are worse and periods where their symptoms become less severe. The way ME/CFS impacts people varies according to a number of factors, including the treatment options they pursue.
Debunking misconceptions about ME/CFS
There are many misconceptions and myths surrounding ME/CFS, which can lead to harmful stigma. For example, many people believe that fatigue is the only symptom of this condition and it, therefore, impacts each person in the same way. Others are under the impression that ME/CFS isn’t a legitimate medical condition, can be slept off, and is all in a person’s head. These beliefs are all completely false and contribute to the stigma surrounding this illness. This stigma can lead to feelings of shame and cause people to isolate themselves or stop them from reaching out for help. Without any treatment or symptom management, the condition may worsen, and the vicious cycle of symptoms, shame, and lack of treatment continues.
Raising awareness of ME/CFS
Due to the myriad of misconceptions and myths surrounding ME/CFS, and the widespread misunderstanding of the illness, it’s incredibly important to raise awareness. There are many different ways to spread awareness, such as sharing factual information with peers both online and offline. Participating in national and international awareness campaigns is also a great way to get involved. ME/CFS and Fibromyalgia International Awareness Day is on 12th May each year. Wearing a dark blue ribbon, researching the condition, and offering help to those who suffer with it are all useful ways to mark this annual event.
ME/CFS support groups and resources
ME/CFS is difficult for many people to understand, which can feel isolating for those who are diagnosed with it. Therefore, support groups for people who share the experience of ME/CFS are an invaluable resource. These groups are available on a local, regional, national, and international level. Some groups meet in person, while others are strictly virtual. The best type and size of support group for each person depends on factors like their personal preferences and physical abilities.
Groups via ME/CFS organisations
The ME Association offers a directory of local support groups for people with ME/CFS. People can simply enter their postcode and a list of the closest available groups appears. The group listings include contact info, web addresses, and brief descriptions of each group. Action for ME offers a peer support forum for people over the age of 18 who want to connect with others living with the same condition. There is also a young person’s community for those under the age of 18. Additionally, this organisation offers their own information and support for those who need it.
Groups via social media
Social media is also a very valuable resource for those in search of ME/CFS support groups. Facebook in particular has many different groups of various sizes. For example, ‘M.E./Chronic Fatigue Syndrome UK’ is a group consisting of 12K members. It’s an easy and accessible way for people from all over the UK with this condition to connect with each other. There are also much larger scale groups available, such as ‘Chronic Fatigue Syndrome/M.E. - Increase Awareness and Understanding’ which has over 44K members. While this group is focused on the awareness aspect, it also offers a space for people with ME/CFS to connect with each other.
Importance of ME/CFS support groups
The stigmatised nature of this illness means that many who suffer with it isolate themselves from those who don’t understand what they’re going through. Support groups like the ones listed above help eliminate the loneliness, shame, and fear that many people with ME/CFS experience as a result of their diagnosis. Group members can help others find the help they need, including new ways to manage symptoms and advice on how to cope with the illness.