• Welcome to Phoenix Rising!

    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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  1. #ManifestME

    #ManifestME

    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...
  2. marjojo

    Tribute to Mag Friel and fundraising page

    Our lovely friend Mag Friel, who had severe M.E. for 25 years, ended her life on 31 December 2017. We have seen too many notices about M.E.-related deaths & suicides. These are not ‘tragic’ losses, they are shameful! I have written a tribute and rallying cry, which you can read on M.E...
  3. marjojo

    Comment by 'marjojo' in 'I just had a bath!'

    That's huge! So happy to read this. Hope more improvements and pleasures will come your way.
    • marjojo
    • Blog entry comment
  4. marjojo

    #MEAction - hosting virtual concert #Bedfest on May 6th

    Thanks so much! Just recognised my dayglo bedlinen and thought 'what is this about'? #BedFest was brilliant, or rather is. I spent weeks looking at every single submission. Quite an emotional rollercoaster in terms of people's suffering, lack of support and recognition, and ability to go on and...
  5. marjojo

    Comment by 'marjojo' in 'We're upright in all but body!'

    Sorry you crashed, hope you're feeling a bit better Pen2? Only pop in to share here occasionally, when energy allows. Can't say I understand fully how things work here, so hope you find this message: thank you for writing/responding when you were so poorly. Wonder what you meant with 'is this...
    • marjojo
    • Blog entry comment
  6. marjojo

    Comment by 'marjojo' in 'Too tired for a riot'

    Thanks, all. Much appreciated. Wish I could catch up with your and others' blogs, but I struggle with reading, and my monotone voice woman reading app exasperates.
    • marjojo
    • Blog entry comment
  7. marjojo

    Comment by 'marjojo' in 'Too tired for a riot'

    Thank you!
    • marjojo
    • Blog entry comment
  8. marjojo

    Comment by 'marjojo' in 'Too tired for a riot'

    Thank you for letting me know, Skycloud! Really appreciate that.
    • marjojo
    • Blog entry comment
  9. Too tired for a riot

    Too tired for a riot

    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...
  10. marjojo

    We're upright in all but body!

    #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...
  11. marjojo

    Comment by 'marjojo' in 'Propranolol seems to be working for my POTS'

    Great news! Apart from the daytime sleepy bit. Matter of priorities, I guess. Hope it'll continue well for you.
    • marjojo
    • Blog entry comment
  12. marjojo

    Comment by 'marjojo' in 'Where the 'I' resides'

    A hug is just what I need today, thank you! Writing is my survival skill. Can spend a whole day kneading a sentence into shape. Gives me purpose and validation. Occasionally it brings a moment of connection. Sending a gentle hug right back.
    • marjojo
    • Blog entry comment
  13. marjojo

    Poll: what's your pattern of muscle weakness?

    Definitely lower arms and legs. Difficulty holding things, drop food between fridge and micro wave... Fatigue increases in course of day - by late afternoon (lying on bed) legs feel as if they were fusing feet up to knee. Mermaid syndrome?
  14. marjojo

    Where the 'I' resides

    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...
  15. marjojo

    Comment by 'marjojo' in 'Places I have lain'

    Thanks for your comment on my writing, Helly. Clean & carpeted areas, yes, please! My orange blanket has wiped more floors than I can count. And you're right, Tania, strangely hospitals seem least equipped to offer somewhere comfy to lie down, until you've reached the doctor you're there to see...
    • marjojo
    • Blog entry comment
  16. marjojo

    Comment by 'marjojo' in 'First appointment at CFS Discovery'

    It's so good when someone listens, isn't it. Was diagnosed with POTS couple of years ago, made me perversely hopeful as there was medication to try, but couldn't tolerate the medication (Fludrocortisone). Need to check out what you're taking. Hope it really helps you.
    • marjojo
    • Blog entry comment
  17. marjojo

    Comment by 'marjojo' in 'Sense and Sensibility...and Shortbread.'

    Sympathies for all you're talking about. I am quite unable to keep up with recommendations re supplements, food regimes and medication. There's always something new. Not being able to read much doesn't help. Feel guilty sometimes that I'm behind (still spending a lot), but think we need to try...
    • marjojo
    • Blog entry comment
  18. marjojo

    Places I have lain

    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...
  19. marjojo

    Comment by 'marjojo' in 'Divans everywhere, I declare!'

    Had a look online, such a quiet, gentle air around his paintings. In 2015 I my art-outing took me to Tate Modern, to see the Sonia Delaunay exhibition. Glorious. A friend rushed me through as I was running out of sitting. Wooden benches to lie on...
    • marjojo
    • Blog entry comment
  20. marjojo

    Comment by 'marjojo' in 'Unicorn spotting'

    The shame you mention resonates. As if we were at fault when we don't get better. It's partly to do with how so many in the medical profession disparaged patients with M.E. over the years, as well as other people's responses to us (well-fuelled by the former), when we stay ill and stay ill and...
    • marjojo
    • Blog entry comment
  21. marjojo

    marjojo

    Unless completely eviscerated by fatigue I need to create. Used to make art, hands permitting, now pour my art into writing.
    • marjojo
    • Blog
    • Blog entries: 6
  22. marjojo

    Divans everywhere, I declare!

    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...