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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Social Justice for PWME NOW! .......blog


Senior Member
(Apologies if this has already been posted, but have been out of the loop for a couple of months with 'health issues' ;)..................well, you wouldn't have guessed it, of course.)


“I believe that withdrawal by a friend and colleague is not a private matter of friendships ending and people going their separate ways. The severely ill have nowhere to go. They run out of options for alternative lifestyles very quickly, and in times of austerity and ideology-driven policies, dehumanising experiences abound without the safe haven of the solidarity and social cohesion friends, family and work can, and normally do, provide.” Claudia in A Troubling Truth, 2016

Along the way, disability bashing of my partner for using a walking stick occurred, a work capability assessment (WCA) of the same took place in which he was declared fit to work and four weeks later, miraculously and irritatingly arbitrarily, the DWP decided he was too ill to be placed even in the work-related activity group (WRAG). Friends who have too little money to do their weekly grocery shopping have gone hungry, the sick children they care for have nothing to look forward to but more institutionalised disability denial instead of a humane and inclusive transition into adulthood. Another friend was too skint to take herself to a work-capability assessment centre while yet another one with fatal heart disease faces eviction or, at best, an extortionate increase in rent she will not be able to pay, while her home-care situation is so bad she goes unassisted for hours, sometimes days. In the world of politics, we have seen the death of irony and, possibly satire (which appears to be the new reality), in conjunction with the fallout from the vastly irresponsible referendum.

Many I have spoken to ask themselves if we matter at all anymore and if there is even the slightest chance of being heard. I understand, and sometimes share, the feeling of hopelessness and a sense that while ‘anything goes’ nothing matters one bit.