Severe M.E. Understanding & Remembrance Day
Aug 8th

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....fatigue is the
least of our many
painful and
diverse symptoms.

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It's lonely,
it's isolating and it's
scary having an illness
that is so misrepresented.

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There is
massive
cover-up
going on
& getting
worse by
the day

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8 ye a r s U N D I A G N O S E D + 2 6 ye a r s 1 0 0 % B E D B O U N D = 3 4 ye a r s L i vi n g w i t h S E V E R E M E W I T H O U T M E D I C A L S U P P O R T

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8 ye a r s
U N D I A G N O S E D  
2 6 ye a r s   1 0 0 %  B E D B O U N D
= 3 4 ye a r s L i vi n g   w i t h
S E V E R E   M E
W I T H O U T
M E D I C A L S U P P O R T

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Affecting more people than AIDS, lung cancer and breast cancer combined, more people than have multiple sclerosis or cystic fibrosis, Severe ME leaves a person as functionally impaired as someone suffering from diabetes, heart failure and kidney disease, and as severely disabled as someone with late-stage AIDS, Multiple Sclerosis, or a person undergoing chemotherapy.

Stop the M.E. Cover-Up !

We M.E. sufferers really want and need so desperately to be “seen, heard and recognised” and to show that we refuse to be ignored or to be invisible to the world.

We may not be able to present ourselves to the world because of severe ill health but we want to be listened to and heard by the appropriate authorities and to receive services, and appropriate help. We would also like to see more biomedical research undertaken, and cognisance taken of the body of biomedical research that exists at present.

We want the medical profession and general public to understand the seriousness of the illness and remember that underneath the sheet there is still a human being.

8th August 2014

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For comprehensive background material on this and last year’s Severe ME Awareness day, please see the 25% Group page  here.

How ME is covered up

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For more information on just how ME is being so systematically covered-up, you can download a short summary from the 25% Group here

Letter to MPs / MSPs

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Please express your concern about the continued misrepresentation of ME and the serious medical neglect and mismanagement of this devastating neurological disease by writing to your MP or MSP.

You can download a letter from the 25 % Group here.

Gallery

a sheet saying government funding for me now !

a sheet saying medical ignorance of ME kills

sheet saying ME Cover Up

~PP6AB5

a person lying down covered with a sheet

a sign saying  severe me invisible, ignored

a quotes by nancy klimas saying if she had to chooose between ME and AIDS she would choose AIDS

a person covered up wearing sunglasses

a sign saying 21 years of agony, no consultant

 a sign saying living behind the lies

a sign saying ME devastates families

a sign saying uncover ME

a person covered up

a person covered up

 a sign saying see ME, Hear ME, Recognise ME

a sign saying ME Cover Up

a sign saying No More

a sign saying ME Cover up

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Let me speak by this picture. It was taken for academic school to show what I’m fighting against. I had to stop the school a year later. I wanted people with ME to pose for me in a artistic way and make a poster for awareness. Nobody volunteered. So it’s me alone here sadly enough.

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The rainbow symbolizes a bridge from ignorance to knowledge.The many colours represent the fact M.E. doesn’t discriminate and is an illness of many layers. The rainbow bridge helps us to remember those who have lost their lives to this disease and to honour their memory.

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sophie

thisis

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Here’s a photo of me taken this morning. Hope the message is clear.

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Hidden from view! 19 years, stage 3 Cancer, misdiagnosed, Cervical Dystonia and a Spasmodic Dysphonia misdiagnosed. This is the reality of Myalgic Encephalomyelitis!

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Note, my unwashed hair, just one small example of the many unpleasant things we put up with suffering from this illness. The simple act of having a shower, and washing and drying hair can feel like running a marathon.

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Don’t cover up M.E. as that would make all of us an invisible blur.

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Here’s my contribution. 14 years old and has ME two years now

 

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Here is my photo for the M.E. Cover-up photo session. I thought maybe it was a good idea to show my darkened room in the picture – as a symbol of being covered up and invisible. I don’t know if you think the photo is too dark, it is not completely dark.

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People with severe ME are often the most abused and neglected by the health system and associated medical professionals. I have been abused many many times by drs, including my previous GP, consultants, nurses…

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This is my wardrobe many days of the week.

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Unlike other diseases, Myalgic Encephalomyelitis can be an illness where sufferers go without support from their communities, their governments, and their family…For those with ME, these typical supports are often skeptical, disinterested, and nonexistent.

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We light a candle at 3 pm.
We hold all we know, with Severe ME, in our hearts.
We hold all who have died from Severe ME in our hearts.
We remember each one, especially Sophia Mirza, on this special day.

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This is my prison.

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We want truth! Stop the Cover Up!

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On the sofa, under the duvet, breathing but not living. Thinking of those we have sadly lost and those who are still struggling with this horrible M.E.

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Just because you can’t see us doesn’t mean we are invisible.Support us in our fight.

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Severe ME

Severe ME Book

“If you have a friend who is very severely ill, this is the book you need to give to them – for them to share with their carers.”” Natalie Boulton : maker of Voices From The Shadows.

 

A Comet of Destruction

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 An exquisitely beautiful, haunting account of the lived reality of Severe ME by Sarah-Louise ‘Feather’ Jordan