Tuesday, July 30, 2013

Severe ME understanding & Remembrance Day AUGUST 8

Severe ME understanding & Remembrance Day

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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

Sunday, July 28, 2013

Does neuro-inflammation in ME/CFS translate into cognitive problems?

Does neuro-inflammation in ME/CFS translate into cognitive problems? That
was the question a Japanese group asked as they hit young ME/CFS patients
with a barrage of sensory gating, autonomic and cognitive tests. Their
findings - 'higher brain dysfunction', a 'hypersensitive brain state' and
the presence of three subsets, two of which appeared diametrically opposed
to each other, opened up new ground in ME/CFS.

Find out how Japanese researchers cracked a cognitive nut Western
researchers have hardly begun to chew on, and confirmed that sensory gating
problems do exist in ME/CFS in Marco's latest neuroinflammatory blog

- *Japanese Sensory Gating Study Reveals Profound Cognitive Deficits
Present in Chronic Fatigue Syndrome **


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For those whom CFS has placed in solitary confinement

I KNOW what the caged bird feels, alas!
When the sun is bright on the upland slopes;
When the wind stirs soft through the springing grass,
And the river flows like a stream of glass;
When the first bird sings and the first bud opes,
And the faint perfume from its chalice steals —
I know what the caged bird feels!

I know why the caged bird beats his wing
Till its blood is red on the cruel bars;
For he must fly back to his perch and cling
When he fain would be on the bough a-swing;
And a pain still throbs in the old, old scars
And they pulse again with a keener sting —
I know why he beats his wing!

I know why the caged bird sings, ah me,
When his wing is bruised and his bosom sore,—
When he beats his bars and he would be free;
It is not a carol of joy or glee,
But a prayer that he sends from his heart's deep core,
But a plea, that upward to Heaven he flings —
I know why the caged bird sings!
* * *
I've often compared CFS to the punishment inflicted on the worst prisoners: confined to a space little larger than your bed, solitary confinement -- you can't go out to see friends and they don't come to visit you. 
But Amnesty International doesn't care about us.  Patients are ignored, abused by the doctors they should be able to trust, and some literally are locked up (in mental wards).
I feel like a caged bird, but when you need to crawl the 4.5 feet from the bed to the bathroom, you can't go out to enjoy life's pleasures.  If you're single/divorced as a result of men being unable to cope with your illness, no one brings those little things to you.  When online grocery delivery first started, I could get food, but not flowers -- and when you have no income because you're too sick to work but the judge says you're not sick enough to get Disability, even $10 for a bouquet from the grocery store is a major splurge, you can't afford $50 several times a month to have a florist bring you flowers to lift your spirits.