"MYALGIC ENCEPHALOMYELITIS A BAFFLING SYNDROME WITH A TRAGIC AFTERMATH" by A. Melvin Ramsay M.D (the first DR to ackowledge M.E/CFS in the UK

If you are new to this illness don't despair!  I am sure you feel as though your world has come to an end....

Just remember to rest when your body tells you to,and try and pace yourself.  Don't forget that watching TV , reading and even talking can deplete your energy!

Try to take little rests throughout the day, and don't be hard on yourself...M.E spells me!  Put yourself first!

 

 

 

What is M.E?

M.E stands for Myalgic Encephalomyelitis and can also be known as CFS- Chronic Fatigue Syndrome or CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome.

M.E stands for Myalgic Encephalomyelitis which basically means an illness which effects the brain, the muscles and the nervous tissue. It causes a wide range of symptoms including profound exhaustion, pain, and mental confusion. M.E is a disabling & chronic illness with no known cause and it is diagnosed by no specific test. There is no known cure but the best approach to treatment is management.

 

 

 

Who gets M.E?

It is estimated that between 0.2% and 0.4% of the population have ME/CFS and it is estimated to affect about 2 out of every 1,000 people in the UK.

ME/CFS exists worldwide and can affect any man, woman, or child and can occur at any age, but most commonly affects women in their 20's -40's.

 

 

 

What causes M.E?

Nobody knows for sure what exactly causes ME/CFS and each individual tries to figure out what there own cause may be. There is suspion of viral infections (e.g. glandularfever & hepatitis), abnormalities in muscle structure & function, genetic factors, vaccinations, major stressful events & trauma however in some cases there is no obvious event that causes it and the person reports a gradual decline in health over a period of months or even years.

 

 

 

How is M.E diagnosed?

There are such a variety of symptoms involved in M.E, that it is a difficult disease to define clearly and diagnose.There are no clear specific tests to diagnose M.E and as a result, a diagnosis can only be done on the basis of your symptoms. A proper diagnosis is essential so a professional should be sought, as otherwise people may wrongly diagnose themselves and be suffering from an illness with similar symptoms. And as a consequence of these many other possible causes of fatigue, a diagnosis of M.E./C.F.S should only be arrived at after a number of other conditions have been excluded. 

 

 

 

What are the symptoms of M.E?

Generally ME sufferers experience a combination of muscle fatigue (myalgia), general malaise and cognitive dysfunction (encephalopathy), hence the name. However, the disease is more complex than this and some of the symptoms are listed below:                             

• Overwhelming severe fatigue of muscles and/or the brain after minor exertion
• Exhaustion that is much more severe than ordinary tiredness, and is unrelieved by a night's rest.
• A flu-like malaise & aching joints
• Muscle weakness after minimal effort with long recovery time
•  Muscles painful to touch, sometimes visible muscle twitching.
• Poor concentration - problems following TV or a conversation. Difficulty learning new information
• Poor memory
• Muddled or slurred speech when tired
•  Poor balance, feeling unsteady, clumsiness, dropping things
• Mental Confusion 
• Dizziness on standing ['postural hypotension']
• Sleep disturbance & Nightmares
• Irritable bowel and other gut disturbances
• Headaches
• Enlarged lymph glands, most commonly in the neck
• Sore throat
• Abnormal temperature control & Hands or feet icy cold, or hot and flushed
• Blurred or double vision due to fatigue of eye muscles
• Alcohol intolerance & sensitivities to food, drugs & chemicals
• Hypersensitive to light and especially sound
• Altered skin sensation - painful to touch, numbness, or 'pins and needles' in arms or legs
• Exaggerated emotions - weepiness, irritability, panic attacks, mood changes.
•  Sudden rapid heart beat, palpitations

 

 

 

 

What is the Treatment of M.E?

 It is important to be aware that the cause of CFS remains a mystery and that there is no simple cure or magic pill.As there is no universal accepted treatment, treatment is aimed at symptom relief and management. But please be aware that some treatments, therapies and medicines can even make you worse and what works for one might not work for another. But here is a few possible treatment & management strategies that may or may not be beneficial:

Gentle exercise. it’s best to follow a "graded exercise programme", which means starting with an activity that can be done comfortably, and increasing the level of activity every few days. Getting too much exercise or increasing the level of exercise too quickly can make symptoms worse. Its important to listen to your body and not to over do it.

Lifestyle changes & Pacing. With ME/CFS it its important to adapt your life and sadly this involves limitations and restrictions for our brain and body. One of the hard lessons many sufferers have to learn, is the importance of pacing yourself: both physically and mentally.  Sufferers essentially need to tread the fine line between rest and activity. On good days there is a strong temptation for people to try and catch up on what they have been missing out on and many individuals end up overdoing it and relapsing. It is also worth noting that, with ME/CFS, it is quite common for there to be a delayed reaction of up to several days (in terms of a worsening of symptoms) after exercise/activity. Good points to keep in mind are Don't over do it, Pace yourself, increase rest, accept limitations, learn to relax, and avoid stress.

Medication. There is no magic pill to make you feel better, however some medications can be used to help relieve some symptoms. Pain relievers such as ibuprofen, aspirin or paracetamol may help relieve muscle and joint pain & headaches. Antidepressants can also be used to treat the depression along with other prescribed medicines to treat symptoms such as Irritible bowel & insomnia caused by ME/CFS. However it is worth keeping in mind that some medications can become addictive and should only be used on a short term basis and you should always consult your doctor before taking any medication.

Cognitive behavioural therapy (CBT). This helps people identify how their thoughts affect their behaviour. It can help people to develop ways to cope more successfully with fatigue and other symptoms.Please note referral to a psychiatrist for this treatment does not mean that the doctor believes it is "all in the mind".

Good Nutrition. As with anyone suffering from a chronic health condition it is important to ensure a good intake of nutrients. A balanced diet is a healthy diet. If you find that you are sensitive to certain foods cut these out of your diet but make sure that you replace the nutrition you would have obtained from these sources.

Alternative & Complimentary Therapies. Among the complementary therapies that may be worth looking into are: relaxation therapy, acupuncture, homeopathy, osteopathy, herbalism, naturopathy and aromatherapy.

 

 

 

What is the prognosis of M.E?

This is extremely variable. In some cases the illness causes persistent disability, while in others it follows a relapsing and remitting course. Some people will improve to some degree after the initial acute stage - although this often takes a considerable period of time and a return to complete normal health is unusual. Once the illness stabilises the majority follow a  periods of relative remissions and relapses. Common causes of relapse include further infections, operations, and undue physical or mental stress. A small but significant minority - possibly around 25% - remain severely affected.