If you are a parent, carer, friend or relative of an M.E sufferer, it can be very tough, especially if you do not know a lot about the disease. This guide i have put together will help you understand the basics, from typical symptoms to advice on how to help the individual as much as possible.
CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue)and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities.
People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.
People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.
The symptoms of CFS/ME are similar to the symptoms of some other illnesses, and to find out what is wrong (make a diagnosis), your doctor will need to do some tests. There is no specific test that can identify CFS/ME, so the diagnosis has to be based on ruling out other conditions that could be causing your symptoms.
Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:
• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats),
• exercising or concentrating on something makes your symptoms worse.
How Can I Help Someone With M.E?
Emotions are harder to control with ME/CFS. People may cry more easily or alternatively they can find laughing exhausting causing brain fog. Heightened emotions may be a sign that a person has exceeded their activity limit.
Household tasks and roles may need to be redistributed. Financial adjustments can be overwhelming. Only a few people with ME/CFS are able to continue working full-time. A parent of a young person with ME/CFS will need to change work arrangements to be at home.
Having less energy means reducing time with others and for most will mean a reduction of 50% or more. Face-to-face contact may need to change to email or telephone. Social outings will need to reduce. Large gatherings may be exhausting. Sensitivity to light, noise and chemicals will lead to further restrictions.
Any stress such as dental work, infections, financial pressures or relationship issues can cause a heightened response.
What is CFS/ME?
CFS/ME is a long-term illness with a broad range of symptoms. The prominent symptom for most people is feeling extremely tired (fatigue)and generally unwell (malaise) after minimal effort, which can make it hard to do everyday tasks and activities.
People with CFS/ME can also have headaches, sleep problems, muscle pain and problems concentrating. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day. Some people have relatively mild symptoms, while others have a serious illness that severely affects their everyday livesand their families. The illness may last a long time.
People with ‘mild’ CFS/ME are generally able to carry on everyday activities, such as their work or education, or housework, but with difficulty. To achieve this, they may have given up hobbies and social activities and need to rest in their spare time.
People with ‘moderate’ CFS/ME can’t move around easily and have problems continuing normal levels of daily activities. They have usually had to give up their work or education, may need to sleep in the afternoon and rest frequently between activities, and have problems sleeping at night.
People with ‘severe’ CFS/ME are only able to do very basic daily tasks such as cleaning their teeth, or may need help even with these. They may be housebound or even bedbound most or all of the time and need a wheelchair to get around. They have problems with learning, memory and concentrating, and are usually very sensitive to noise and light. It may take them a long time to recover from an activity involving extra effort, such as leaving the house or talking for too long.
Symptoms of CFS/ME
Your doctor should consider CFS/ME if you have disabling tiredness (fatigue) that is new or started suddenly, lasts a long time or keeps coming back and cannot be explained by other causes. CFS/ME should be considered if the fatigue means you can’t do the things you used to, if it gets worse after activity or gentle exercise such as a short walk, and if you also have some of the following symptoms:
• sleep problems
• pain in the muscles or joints
• headaches
• sore throat or sore glands that aren’t swollen
• problems thinking, remembering, concentrating or planning
• flu-like symptoms
• feeling dizzy or sick or having palpitations (irregular or fast heartbeats),
• exercising or concentrating on something makes your symptoms worse.
How Can I Help Someone With M.E?
Household tasks and roles may need to be redistributed. Financial adjustments can be overwhelming. Only a few people with ME/CFS are able to continue working full-time. A parent of a young person with ME/CFS will need to change work arrangements to be at home.
Having less energy means reducing time with others and for most will mean a reduction of 50% or more. Face-to-face contact may need to change to email or telephone. Social outings will need to reduce. Large gatherings may be exhausting. Sensitivity to light, noise and chemicals will lead to further restrictions.
Any stress such as dental work, infections, financial pressures or relationship issues can cause a heightened response.
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