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The Long Goodbye Cirona Wilson of Her Daughter Sophia That Died of M.E./CFS


Health & Wellness  (tags: sophia mirza, criona wilson, M.E., CFS, Myalgic Encephalomyelitis, Lynn Gilderdale, Kate Kilderdale, UK, psychatric abuse, ethics, death, disease, healthcare, investigation, government, prevention, warning )

Cheryl
- 3267 days ago - independent.ie
Criona Wilson heard the old war song in her head, Now Is The Hour We Must Say Goodbye, and knew her daughter, Sophia, was about to die. The former midwife from Ennis, Co Clare, had been nursing her youngest through years of chronic ME, watching as



   

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Comments

Elainna Crowell (174)
Thursday March 11, 2010, 1:46 am
What a terrible tragedy. Why isn't there more research into this horrible disease?
 

Elainna Crowell (174)
Thursday March 11, 2010, 2:49 am
I can only weep for the mother.
 

Cheryl B (375)
Thursday March 11, 2010, 3:05 am
I posted about sophia when she died. Lynn Gilderdale just died, not of the disease, she was bed confined for years and of the 25% group, that are permanently and took her life, suicides are one of the highest with ME/CFS so is stroke, heart attacks, and sophia died from the illness, they found it in the cells around her spinal cord and others. I am mostly bed-confined not as severe as either of them, some days close and treated very bady by government homecare for years, left in my own mess. the psychiatric community says is it a solomence (sp?) disorder for their mostly fake dsm for $ and peusdo science and one of he worst places is the UK although they have said the same here, they don't section people, they do damage them, when I say "here" I mean Canada . the WHO has declared M.E. a disease of the central nervous system and neurological since 1969 and ontario/canada ME/CFS as neurological since 2005, but I was still told they didn't believe it even though I was told a doctor could never say that to me again, neurologists and refused to be treat me, doctors and specialists repeatedly, let alone for the rest of the damage most still not on my medical records. I was damaged badly my whole body, dystonia, movement disorders, every muscle and ligament damaged as well from their medications saying my ME/CFS was psychatric. There is some research by Whittmore Peterson Institute and Hempherix who makes Ampleigen, which the FDA and canada have been stalling for near 20 years go figure you have to get it in trials or cost recovery, pay for it and the doctor and nurses to infuse it x2 a week. there is also immuvoir, and kutapression is back on the market both helped me and I hope to get them again when I get a doctor, inhouse . Most are studies over the world, the ones in the lead are in the USA, but not by much. We are still quite ignored and abused, and left without care, supports. the National Me/FM association put out a study for Canada, and of all the illnesses were one of the worst affected in quality of life and necessisities, with no supports or near none supplied by government, and NO FUNDING for research for several years. ME/CFS various from person to person in severity and CFS is an umbrella term for several that are similar to M.E, , not just ME, the USA came up with that dreadful name CFS that has done us more damage, as fatigue is a part of it, for some not that bad, the neurological is and your heart, blood volume/oxygen levels, everything that can go wrong in your body does. Some still function enough to work part time, many use alternative med's it pretty much what we have been left with or allopathic medicine, the ones that cover symptoms not heal. excuse typos having hard time typing right now
 
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