What is M.E?

So I figured it would be useful to have a permanent page dedicated to explaining what M.E. is. This page will be based on my experience and knowledge of M.E. I will do my best to make it a broad explanation but M.E. affects every person differently. If you want to know more or find a general picture of what M.E. is please take a look at the Useful Links page.

What is M.E.?
M.E. is a chronic illness that affects around 250,000 people in the UK alone. It is often left undiagnosed for a number of years and it is unfortunately common to find doctors who do not believe the illness exists.

M.E. stands for Myalgic Encephalomyelitis which when broken down equates to:
My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation

Because no one knows the cause or indeed much about M.E. there are also a number of other names for the illness. Some charities still use the acronym M.E. but believe it stands for Myalgic Encephalopathy. In many instances it is now referred to as Chronic Fatigue Syndrome or CFS. But other names do also exist: Post Viral Fatigue Syndrome (PVFS); Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) are just the ones I can remember!

There are broadly three 'types' of M.E.; Mild, Moderate and Severe.

Mild M.E. (80% and above) - Can lead a relatively normal life but require more rest than normal. Able to care for yourself and carry out most domestic tasks. May be able to work but will often need days off to rest. In order to be able to work, care for yourself and carry out most domestic tasks most if not all leisure and social activities will have to be cut back.

Moderate M.E. (50% - 80%) - Reduced mobility and limited activity levels. These and the severity of symptoms vary across time. Ability to work is unlikely and frequent rests are required. Sleep is often disturbed and poor.

Severe M.E. (40% and below) - May be able to carry out minimal daily tasks to take care of yourself. Often have severe difficulties processing what's going on around you. Often wheelchair dependent for mobility, and unable to leave the house except on rare occasions. When you do go out, you suffer prolonged worsening of symptoms as an after-effect of the effort. Spend most of your time lying down in bed or on a sofa. Often sensitive to any noise and/or bright light.

The different 'types' of M.E are better described in the Functional Ability Scale (Opens as a PDF) I have put a rough guide of the percentages from the functional ability scale next to the 'types' above.

Symptoms of M.E.
There is a vast array of symptoms associated with M.E. and I admit this list may not be exhaustive but it is a list of all the symptoms I suffer from and the ones I can remember are associated with M.E. even if I don't personally suffer from them. As I said before everyone who has M.E. is different and as result is affected differently by this illness.

  • Fatigue/Exhaustion that is different to what you would normally feel at the end of the day. Similar to the type you have when you've got the flu, only worse.
  • Chronic pain, not just in muscles but also in joints. 
  • Post Exertional Malaise (PEM) a period of intense exhaustion lasting over 24 hours after an activity. Sometimes occurring between 1 and 5 days after the activity! 
  • Muscle weakness.
  • Stiff joints and muscles.
  • Sleep abnormalities; inability to 'switch off', insomnia, painsomnia (insomnia as a result of pain), unrefreshing sleep, inability to sleep for more than two hours at a time or the opposite; sleeping for anything up to 23 hours a day.
  • Dizziness
  • Headaches; ranging from mild to severe.
  • Chronic sore throat; ranging from mild to severe.
  • Exercise intolerance
  • Muscle twitches
  • 'Brain Fog' 
  • Difficulty concentrating/maintaining attention.
  • Short-term memory problems.
  • Clumsiness
  • Balance problems.
  • Low blood pressure/postural hypotension (resulting in fainting)
  • No temperature control; feeling hot when it's cold and vice versa.
  • Clammy periods; sweating whether hot or cold.
  • Enlarged glands
  • Sensitivity to light and sound
  • Intolerance to alcohol, caffeine and certain foods.

Treatments
There is no known cure for M.E. Suggested treatments by doctors include; Cognitive Behavioural Therapy (CBT) and/or Graded Exercise Therapy (GET). The latter is often found to be detrimental to people with M.E. and can result in leaving them bed bound.

The best way to 'manage' life with M.E. is to pace; with careful pacing, balancing activity levels with rest, it is possible for some to make a complete recovery. At any point pushing beyond a known limit, getting the balance wrong, or getting a virus/infection can result in a relapse; causing any progress made to be wiped out.

Many doctors will prescribe medication in an attempt to help manage the pain, anxiety and sleeping problems associated with having M.E. These medications will only help relieve some of the symptoms of M.E. and are not designed specifically for people with M.E.

The Future
For things to change in the future we need to change the perception of M.E. Remove the stigma associated with it. And fund research into it. This is vital if people are to stop suffering in silence, too ill to make their voices heard. We need bio-medical research into M.E. like that funded by the charity Invest in ME

This page was published on May 12th for International ME Awareness Day 2014.