When will the abuse of Severe ME Patients end?


I read the heartbreaking story of very severely affected 31 year old New Zealander, Marcel Robert, this morning with tears streaming down my face.

It is a long article, but please read, share and spread the message that Severe ME Patients continue to be globally abused, neglected and mistreated. In my opinion, it is the biggest medical scandal, ever.



You can read Marcel'sfull story, shared by Natalie Akoorie, via this link https://m.e.awareness.nz/marcel-needs-research-for-me but originally published in the NZ Herald. A small excerpt below...

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"Marcel Robert lives in a rest home. He is 31 years old. Natalie Akoorie finds out what it's like to be unable to live life because of an illness and why funding for research is so important. 

In a darkened room at Oxford Court Lifecare in Dunedin, a man who should be in the prime of his life is wasting away. Marcel Robert is bedbound, unable to care for himself, barely able to hold a conversation above a whisper. 

He's been living like this, solely reliant on caregivers to survive, for 18 months and there's no hope of improvement anytime soon. 

"I'm 30 and live in an aged-care facility," he says. 

"I'm completely bedbound, unable to leave my room. "I'm in constant pain in my gut and muscles. Constant nausea, dizziness, brain fog, severe fatigue, fevers, burning eyes that are too sore to focus."I can't enjoy a view, or look at my niece. It's been years since I've had a proper conversation. "I'm missing out on life, all the big things; kids, a career, good friendship. And all the little things that make life worth it." 

Sleep doesn't come easy for Robert. An eye mask is necessary to dim light and watching television, his last distraction from reality, is becoming difficult. But he is grateful for the compassion shown by his caregivers."They do a lot of little things for me here that I can no longer do myself. Things like providing meals, helping me wash daily and shower weekly, cleaning my room, washing my clothes." Ron says his son now struggles to sit up just a little in bed and when caregivers shower him once a 
week.

Full article here https://m.e.awareness.nz/marcel-needs-research-for-me

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When will the mistreatment, neglect and abuse of Severe ME Patients end?






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