Tuesday 6 August 2019

What is Severe M.E.? // Severe M.E. Week 2019

What is Severe M.E. Week? 

Severe M.E. is a day to remember and think about those living with Severe M.E. who are mostly missing and unseen from society because of how their M.E. affects individuals and to give those individual's a voice.

It's also a day to raise awareness of Severe M.E. and what Severe M.E. is and think about how individual's with Severe M.E. can be better supported, improve care and support and most importantly try and get more funding for research into M.E.

What is Severe M.E.?

M.E. is a multi systemic neuro-immune disorder. The Who Health Organisation recognises that M.E. is a neurological disorder. Researchers have found abnormalities in he immune, muscle, cardiovascular and central nervous systems.

There are 250,000 people with M.E. in the UK. (around 0.4% of the UK's population)
1 in 4 people with M.E. are severely affected than equals to around  62,500 children, young people and adults.

Individuals with severe M.E. are either house or bed bound, (I also use the term 'sofa-bound', when moving round the house is too much but you're able to make it out of bed that day). 

An individual's symptoms are more profound  making basic tasks most difficult and tiring to do or even impossible to do. A lot of individuals need help and support from others.

Many  individual's with Severe M.E. use a wheelchair either part or full time to help them with their mobility.

To date there is no cure for M.E. and there is also no consistent to universal treatment guidelines for M.E.

Many people with severe M.E. have chronic pain and for some individuals depite taking medicine for their pain their pain is so much that medication only helps a little. Some individuals are unable to take pain relief due to acute drug sensitivity.

M.E. Symptoms

(Note: this list is not exhaustive)

There are many many different symptoms of M.E. and each person is affected differently. Symptoms may be consistently there whilst other may be episodic. For some individuals they also may also go through periods of relapse and remission, whilst others may experience a steady decline in their health.

  • Persistent/excessive exhaustion or fatigue
  • P.E.M. - Post Exertion Malaise
  • Cognitive difficulties - memory loss, poor concentration, reduced attention span, inability to plan and organise thoughts, difficulties finding words
  • Chronic pain
  • Muscle pain (myalgia)
  • Muscle spasms
  • Tremors 
  • Poor stamina and weakness in the muscles and limbs
  • Hypersensitivity  - noise, light, sound, smells, motion
  • Speech/vocal difficulties
  • Joint pain
  • Headaches and migraines 
  • Feeling flu-like
  • Recurrent infections
  • Sore throat
  • Sleep difficulties
  • Autonomic dysfunction - poor temperature control, postural dizziness, loss of balance, poor circulation
  • Digestive problems
  • Emotional difficulties
  • Vision problems/visual disturbances
  • Multiple Chemical Sensitivity
  • Drug sensitivities
  • Bladder problems
  • Increased risk of pressure sores
  • Sensory disturbances e.g. periods of loss of feeling in parts of the body or pins and needles sensation

The Effects of Severe M.E.

Quality of life test indicate that severe M.E. suffered feel every significantly the same as an AIDS patient feels two months before death. 98% of people with severe M.E. do not get better. Peterson describes M.E. as "one of the most disabling diseases that I care fore, far exceeding  HIV disease except for the terminal stages".25% of suffered with severe M.E. describe themselves as bedridden, and 57% have been either housebound or bedridden for more than 6 years, illustrating "in numbers rather than words that mobility in M.E. can be substantial." - 25% M.E. Group


For every person with M.E. in the UK just £4 gets spent on research!

25% of individual's with M.E. are severely affected
2% are very severely affected
Action for M.E.’s 2014 M.E. survey report found that:
  • 96% of respondents with severe M.E. said they had stopped or reduced household tasks
  • 95% had stopped or reduced social contact
  • 74% require full or part-time care
  • 70% were no longer able to leave their home independently.
Surveys of severely ill patients by the 25% M.E. Group and Action for M.E. show that:
  1. More than half are unable to attend their GP surgery, yet only a minority of these ever get a GP home visit.
  2. One-third waited longer than 18 months for formal diagnosis.
  3. Many feel suicidal because of their illness.
  4. The overwhelming majority suffer severe pain.
  5. Around one-third use a wheelchair.
  6. Many say that psychological strategies, such as cognitive behavioural therapy or graded exercise, have not helped or have worsened their condition.
  7. Improvements in health can occur – but over time.