Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS)
মায়ালজিক এনসেফালোমাইলাইটিস (ME) বা ক্রনিক ফ্যাটিগ সিনড্রোম (CFS)
Myalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is a long term nervous system condition. It can affect many parts of the body, but most often it affects the nervous and immune systems.
ME/CFS is more common in women than men. It can affect children and adults of any age or background. Sleep or rest does not make it go away, and it disrupts daily life. It is sometimes diagnosed as post viral fatigue syndrome (PVFS).
Common Symptoms
⚠️ This symptom list is for educational purposes. Having these symptoms does not mean you have this condition. See a doctor for proper diagnosis.
Medicines Commonly Used
⚠️ These medicines are commonly used for confirmed diagnoses of this condition. This is NOT a recommendation or prescription. Treatment must be determined by your doctor.
No medicines have been linked to this condition yet.
Causes
What causes ME/CFS?
We still need more research to be sure what causes ME/CFS. Several factors may play a part, and there could be more than one type of the condition.
It can start suddenly or develop slowly over time, and may be triggered by:
- an infection
- a physical injury
- surgery
- a stressful major life event
In some cases, no clear trigger can be identified.
Diagnosis
Diagnosing ME/CFS
There’s no single test to detect ME/CFS.
ME/CFS might be diagnosed when people experience the 4 main symptoms of ME/CFS persistently over a minimum of 6 weeks for adults and 4 weeks in children and young people.
The earlier the illness is recognised, the sooner you can get help to manage your symptoms. Many people with ME/CFS find it helps to keep a diary of their symptoms to take to their GP or specialist.
Your GP will usually:
- do a physical and mental examination to rule out other conditions
- ask about recent travel, tick or insect bites, unusual infections, and drug and alcohol use
- review current medication
- arrange tests
They may be able to make a diagnosis after 3 months of seeing a pattern of symptoms. Anyone suspected of having ME/CFS should be considered for routine blood tests to identify other possible illnesses. More investigation may be needed if the diagnosis remains in doubt.
Some people with ME/CFS also have another long-term condition and it’s important that you talk to your GP about how to manage the symptoms.
Treatment
Although there is no cure for ME/CFS, there are ways to help manage your symptoms.
Because this illness is so complex, different approaches work for different people. Your GP may be able to support you in managing your individual symptoms.
To decide what treatment is right for you, look at the evidence, including published research and patient surveys. Make sure you fully understand what a treatment involves before you agree to it. You have the right to decline any treatment option you do not feel comfortable with.
Your GP may suggest some of the following options.
Your GP may suggest reviewing and changing the medicines you take. They will consider any other conditions you may already be receiving treatment for, alongside the ME/CFS symptoms that need attention.
Your GP may also need to weigh the combined effect of medicines used for symptoms and for other conditions. This matters because sensitivity to medicine is a common feature of ME/CFS.
If it is difficult to eat a proper balance of nutrients because of poor appetite or food intolerances, speak to your GP for advice.
Your GP may work with you directly, or refer you to another therapist, to suggest aids, activities or support that can help you recover or adjust.
Pacing means stopping an activity before you feel its effects, so that you keep some energy in reserve. It is easy to overdo things on a good day and feel the effects later.
Balancing periods of activity and rest, and noticing which activities take the most out of you, can help reduce how often you experience PEM.
It can take time to change your habits and to stop an activity even while things seem to be going well. Even so, doing this is key to managing the condition over the long term.
Counselling can help you adjust to the impact ME/CFS has on your life. This does not mean the condition itself is psychological.
CBT can help some people with ME/CFS manage their symptoms. It can also sometimes help with changes in mood that come with living with a long-term condition.
CBT should only be given by a healthcare professional with proper training and experience in CBT for ME/CFS.
Alternative or holistic therapies may offer some comfort, but be cautious of any method that claims to cure ME/CFS.
Discuss any alternative or holistic therapy with your GP before you try it. Until more research is done, no one can say for certain whether a person with ME/CFS will benefit from these therapies.
Complications
Living with ME/CFS
There are some things that you can do for yourself to help you manage your symptoms. Small changes make a difference to your energy and mobility. This is called self-management.
Planning your time
Record what you do so that you can build a picture of what uses more energy and what activities you can ask others to do for you. This will show you if there are patterns of symptoms and when they appear during your day.
Rest and relaxation
This is very important for managing ME/CFS. You may need some support and advice on what that might mean for you in terms of your physical, mental and emotional activities for resting.
Getting support
Being open with people and asking for help when you need it before you’re exhausted is a key approach to managing your condition. Talking about how you’re feeling is important for long term health conditions because of the impact your symptoms have on the way you live your life.
Talk to your GP about emotional support available to you.
How will ME/CFS affect my quality of life?
Not everyone will experience the same symptoms so it’s important not to compare people with ME/CFS. People with ME/CFS can have very different experiences of the condition and how long their symptoms last.
The impact of symptoms can be:
- mild
- moderate
- severe
- very severe
As symptoms change over time so does the impact they have on people’s lives.
How long will it last?
Most people with ME/CFS improve over time, although some people do not make a full recovery. It’s also likely there will be periods when symptoms get better or worse. Children and young people with ME/CFS are more likely to recover fully.
Where can I get support?
ME/CFS can have a significant emotional and financial impact on your life. A lack of understanding and awareness about ME/CFS means patients can experience disbelief, and even discrimination.
Information on working, welfare benefits, accessing health and social care and others sources of support for patients and carers are available from Action for M.E. They also offer resources and services for children and young people affected by ME/CFS and their families.
Peer support
In some regions of Scotland there are local support groups providing peer support, information and advice. ALISS and Action for ME can help with signposting to these groups.
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