Where's the fire anymore ???

The late 1980’s and early 1990’s were a different era. Chronic fatigue syndrome (ME/CFS) made the cover of Newsweek and major articles appeared in Rolling Stone and major newspapers across the country. CFS support groups sprang up out of nowhere. The first scientific conference on CFS was attended by hundreds of doctors and researchers.
Cort Johnson , Phoenix Rising


"In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition.  "

Maryann Spurgin, Ph.D., Reviews the 2003 ME/CFS Clinical Case Definition
 You guys are so screwed up. You are like little lobsters sitting in a pot of lukewarm water and the corrupt insurance companies are turning up the heat and the those of us who are smart have been trying to warn you for 20 years! 

Tom Hennesy, the founder of ME Awareness day

..and here I type ;  another weekend of torture and torment, of gaps in between the overwhelming disease,  of talking  about the next moment and hoping  that the pain is not going to be too bad.  Holding her.....

I  have been asking myself, where is the fire these days ?

The ME community seems to have  metamorphosed into a self-destructive, angry  clique, characterized only by its propensity for self-sabotage  and  the way it tries to destroy any  activist  who dares puts their head above the line, for the sake of a few  egos.   My guess is that very few in the "ME "community, actually have genuine ME.

The ME "Groups" here in the UK, if they are not acting as a glossy front for the psychiatric lobby , if they are not promoting "opathy"  , are just  too worn out and tired these days to make any difference.  I visit those websites that are supposed to be speaking up for the severely affected with mounting  sadness and a sense of growing isolation.

Invest in ME, in my opinion,  are the mighty  exception,  bravely waving a bold , fluttering banner, doing incredible things, taking inconceivable chances .

The  flame, thank God,  still burns.

In the hearts of all those who really know what it's like.


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