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More than a quarter of a million people in the UK are sick with M.E,
including children and teenagers. And millions around the world.
Numbers which are growing. Myalgic Encephalomyelitis
(sometimes called Chronic Fatigue Syndrome) is a complex, severe, long term,
neurological illness - or group of illnesses.
1 in 4 are housebound or bedbound, sometimes for years or decades.
Many are too ill to go to work, and school, or going out with friends,
or even do any normal day to day activities, like cooking lunch, or having a shower.
Some are too ill to talk, or to swallow, and have to be fed with tubes,
and communicate with sign language. ME isn’t just being “tired all the time”,
it’s an “invisible illness” - even if we look OK,
we feel terrible, ill and exhausted after just the tiniest bit of activity,
and then need to rest completely for hours or days afterwards.
Exercising too much or pushing our bodies makes us worse.
It’s like having the most severe flu, and trying to run a marathon,
at the same time. All of the time.
Our muscles have no energy, it’s impossible to think straight,
and literally dozens of other symptoms, affecting our sleep, unbearable pain,
dizziness, affecting our immune systems, hormones, emotions, heart, digestion,
being too hot or cold, being too sensitive to light, noise and smell, and more.
We were well, busy, active, hard-working, successful -
until suddenly without any warning we were struck down by this devastating illness.
Or for a few people, it seems to come on gradually.
ME usually starts after a bad virus or infection,
sometimes after chemical poisoning, pesticides, vaccinations, or other triggers,
and, like other illnesses, can be worse because of emotional pressures.
Thousands of studies have shown all the physical things that can go wrong
in our bodies when we have ME - but we still don’t know exactly what causes it.
People with ME are more likely to die up to 20 years younger,
from heart or kidney disease, or cancer.
Sadly, some people with ME take their own lives,
because they are not offered the help and support they so desperately need,
but instead are told to simply “get on with it because they are not really ill”.
ME is not depression.
ME is not a psychological behaviour problem where we think we’re ill but we’re not.
And ME is not being lazy! ME is real.
We want to get well! We have dreams,
hopes, and ambitions! We want to do things!
There is almost no research being done. There is no cure - yet.
Some days we feel a little less ill, some days it’s worse.
Many people do get better, with time to rest, and a variety of different treatments.
Many do not, and are still ill.
Thank you for taking the time to watch this, please share it with your friends.
We hope that more people will be able to understand.