Noise Paralysis


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DO NO HARM, DO NO BETRAYAL

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By Diane  I'm not sure where to start but this is my story so far.  My name is Diane and I'm a carer for my adult daughter, Lili, who is completely bedbound with very severe myalgic enceplalomyelitis.  For Lili, M.E. didn't come slowly.   It very rudely crashed into her life and very quickly stole her health, taking bigger and bigger chunks of it as she deteriorated.  It all began when she experienced a gastric-flu virus of a sort she had never experienced before because this time she never regained her health.  A couple days later, she woke up with agonising head pain 'like her brain was on fire', with severe neck pain – she also couldn't move her neck, and her whole body was paralysed.  She's not sure how long she stayed like this as she was in and out of consciousness but she truly felt that she was going to die because her body was undergoing an extreme crisis.  To cut a long story short, it took a year to get a diagnosis durin...
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When I am 64 and other false positives : The PACE Trial.

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Pragmatism : Why the ME Leadership is so wrong

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There's an argument that goes something like this : “ In the real world almost all ME/CFS research is carried out on people with  Fukuda CFS ...the only way to sort out the ME/CFS mess  is to identify clinical and pathological sub-groups under the ME/CFS  umbrella. ” We could identify it as the pragmatic argument. Except, what has " pragmatism" ever done for us ? In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their  scraps. As Fishoutofwater comments : What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act. "Pragmatic" Democrats ..sold our health care...
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