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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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marjojo
- Author marjojo
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I was thinking of my friend Mag Friel when I wrote these lines last year. To most of the world, she, and thousands like her who suffer(ed) from severe M.E. – bed-bound, in constant pain, with a catalogue of spreading and ever more debilitating symptoms – do not exist. Let us change that...
Had meant to post this for ME Awareness Day and #MillionsMissing but only just remembered. Wrote this as, being a mostly supine sort, I couldn't take part in the protests in person. So many of us feel invisible, discounted. I'm sad and angry for all who do. Made a card and sent to friends and...
#BedFest begins today - a worldwide hashtagged festival of art, music, poetry, performance and multifarious creativity by people living with (severe) M.E. Voices that are seldom heard, people who are rarely in the world, called forth and gathered by #MEAction and its volunteers. Let's escalate...
Hospital appointment on Monday. Went/was taken fully, freshly dressed (improvement on last year!). I cannot remember much - fatigue blots memory out.
Wrote this a while back. Too tired to reframe (although the worst is over), and it's more or less the same each time): 'Any outing takes its...
I call every time I leave the house an 'outing', incl. hospital appointments. Only those to the dentist (long overdue) fall into a different category. Cavity calamity...
Even when I'm at my best: in-the-world-time needs deliberation and support, and a place to lie down at the other end. Over...
On Tuesday I was out, for pleasure. Managed twice last year; dreaming of four, five, maybe more times... Went with friends to Dulwich Picture Gallery (in London), Vanessa Bell’s show beckoned. Favourite jeans on (flared), and a wide grin; wheelchair pushed by stronger arms than mine. No coffee...