Tuesday, July 30, 2013

Severe ME understanding & Remembrance Day AUGUST 8

Severe ME understanding & Remembrance Day

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30 July 2013 <<<<
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From: Simon Lawrence

The 25% M.E. Group

Please support this initiative and send the
following Press Release to you local and/or
national newspaper


8th August

Severe Myalgic Encephalomyelitis
Understanding and Remembrance Day

'I am a ghost in the land of the living – forgotten,
ignored and drifting on the edges of life, whispering
my message in the ears of the lucky ones who can
participate in life. I have Myalgic Encephalomy-
elitis. I call it paralysis, muscle and cardiac failure,
brain injury, a living plague that kills only slowly,
but does kill...

Aylwin (Jennifer) Catchpole,
who died in August 2010

Why have an Understanding and Remembrance
Day highlighting the plight of the severely

The severity of this illness often makes it impossible
for people to have contact with loved ones,
doctors, or the outside world. This is a group of
thousands of people in the UK who are generally
invisible. People with the severe forms of this
disease can no longer pursue their careers,
hobbies, or everyday lives.

In helping us to make visible the stories of people
living with severe M.E., and of those who have died
as a result of the illness, you can help end years of
misrepresentation about M.E. and increase the
understanding of the general public, who often
underestimate the seriousness of the disease.

This ignorance causes much suffering to those with
M.E., who have a double battle, not only with the
disease itself, but also to get the illness taken
seriously by those around them. There is an urgent
need to raise awareness.

What's the significance of 8th August?

This is the birth date of Sophia Mirza. Sophia was
bed-bound with severe Myalgic Encephalomyelitis
and was a victim of medical abuse.

Her doctors did not believe that Myalgic
Encephalomyelitis was a physical disease and so
she was forcibly taken from her bed/home by social
workers, police officers and doctors, and kept in a
psychiatric facility where she received
inappropriate treatment and care.

Sophia subsequently died
of M.E. at the age of 32.

Her post-mortem revealed widespread
inflammation in the spinal cord. This same
inexcusable abuse still goes on.

Emily Collingridge - 17th April
1981 - 18th March 2012

"When our daughter, Emily, died in 2012, my
husband and I were overwhelmed by the hundreds
of messages of sympathy we received, even from
people we did not know.

They came from friends, from those expressing
gratitude for her endless campaigning to spread
awareness of ME and from readers of her guide to
living with severe M.E., many of whom said it had
changed their lives."

The inquest into Emily's death took place on 24th
May 2013. In her summary the Coroner referred to
ME as a condition which is not understood, and
expressed the need for more research.

She was echoing an appeal made by Emily in
2011 highlighting what she described as "the
scandalous lack of research into the most
severe form of M.E. and the lack of
appropriate support for those suffering from

A final plea in Emily's own words.

"Please put an end to the abandonment of people
with severe ME and give us all real reason to

Emily may have lost her personal battle, but her
battle on behalf of all those still suffering from
severe ME should not be ignored.

Further information

What is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis literally means muscle
pain (myalgia) with brain and spinal cord
inflammation (encephalomyelitis).
It is a complex neurological illness.

The most characteristic distinguishing feature
is that symptoms are exacerbated by activity
and sensory stimuli beyond the patient's

Activities that trigger flare-ups can be tiny by
healthy standards, depending on the severity
of the illness. Simple things like talking,
watching a TV programme, or eating a meal,
can cause an exacerbation.

Dysfunction has been found in all the
major systems - neurological, immune,
endocrine, cardiovascular,
musculoskeletal, gastrointestinal,
respiratory, and genito-urinary, which is
why people with Myalgic
Encephalomyelitis can have such a wide
range of symptoms.

Common symptoms include widespread
pain, cognitive dysfunctions (e.g.
problems with concentration and
memory), disabling sensitivities to
everyday stimuli (such as light and
noise), difficulty being upright (including
sitting up in bed), sleep disorders and
gastrointestinal problems.

You can read Sophia's story here:

Her story also features powerfully in the film 'Voices
from the Shadows'
which is available from:

Emily also wrote an informative book entitled:

'Severe ME/CFS: A Guide to Living' which can be
found at: www.severeme.info

Further website information can be found at:

The parents of those mentioned in this Press
Release are happy to be contacted by members of
the Media. This can be arranged through
contacting the 25% ME Group, (the national
support group for severely affected ME Sufferers).
Contact details below.

Tel: 01292 318 611
E-MAIL: enquiry@25megroup.org

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