• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. Morgaine

    In Memory of Rich Van Konynenburg.

    Such tragic news, like many others, I so appreciated his posts & his generous spirit. My thoughts & prayers are with you & your family
  2. Morgaine

    Paralympics for people with ME?

    Good blog here on the difference between disability & being disabled by chronic illness: http://ronsrants.wordpress.com/2012/08/04/the-paralympics-and-the-chronically-sick-and-disabled-a-press-release/
  3. Morgaine

    Feeling Old? Research Suggests You May Be: Newton on ME/CFS - Part I

    That was my experience too, I was a fit and active 22 year old when I became ill and vividly remember the shock of suddenly being outperformed by my grandparents who were all in their mid-to late 70s. In fact, I was only able to start to outperform my grandmother when she began to experience...
  4. Morgaine

    In Memory of Emily Collingridge.

    No words to describe my sadness & anger at this news. How many more have to suffer before this terrible illness is taken seriously
  5. Morgaine

    Invest in ME centre fundraising reaches 25,000

    You have to use the link on easyfundraising page, but you can download their toolbar. Then you can go straight to amazon & just click a button on the toolbar to trigger donation. It's well worth doing, I've clocked up 100 in just over a year. I do all my shopping online, as I'm housebound & it...
  6. Morgaine

    Merry Christmas everyone.

    What a beautiful quote, Nielk
  7. Morgaine

    Merry Christmas everyone.

    Merry Christmas!
  8. Morgaine

    Keeping a diary for M.E.

    Sounds like an interesting project. I already keep a symptom/treatment log, so I can see what helps me & what doesn't as well as to show to doctors & for benefit assessments etc so it shouldn't be too much of a stretch to take part in this.
  9. Morgaine

    Fueling Good Reward link for ME/CFS Knowledge center

    Great news! Nice to know all that clicking was worth while :-)
  10. Morgaine

    NHS Scotland recommends to diagnose ME with the Canadian Criteria and separate it fro

    Fantastic news, let's hope it spreads across the whole UK.
  11. Morgaine

    Mount Sinai ME/CFS Center

    Let's hope so Nielk, fingers crossed! I'll definitely report back & let you know what happens.
  12. Morgaine

    Mount Sinai ME/CFS Center

    I've already signed up for the twin study, & am really pleased to hear it is following up on Jonathan Kerr's work.
  13. Morgaine

    Norwegian Study makes UK news at last - BBC

    Good comments Sasha & Laurie, I've green arrowed them both!
  14. Morgaine

    Fluge and Mella answers about Retuximab on netmeeting

    Kheopz, can you post the link to this please?
  15. Morgaine

    Are you a twin?

    Thanks Nielk, I've sent an email. :-)
  16. Morgaine

    Are you a twin?

    I am a twin, but am in the UK. Happy to help if they are interested in non-US people.
  17. Morgaine

    Good POTS articles to show reluctant Doctor

    Thanks for the links, guys. I've passed on the info to my friend. :-)
  18. Morgaine

    Yikes! trying to choose a heart rate monitor

    I have a Garmin FR60 too, & am very pleased with it. I got this model because of being able to download the data. I noticed fairly quickly too that I had POTS, & was able to show a print out of my 'poor man's tilt table test' to my doctor, who was happy to give me a diagnosis on the basis of...
  19. Morgaine

    (Review) Chronic fatigue syndrome, the immune system and viral infection.

    According to the ME Association Facebook page, the son of the editor of Public Service has ME, hence the sympathetic stance story wise.
  20. Morgaine

    $$$ for WPI vote daily now in Vivint Round 2!

    eric, I thought that too. The illness that dare not speak its name... Really pleased for WPI, though.
  21. Morgaine

    How do you amuse yourself during the day?

    Oh dear, far too late for me then, I think I picked up my first one in 1986 & I dread to think how many re-reads I've done now! :cheeky grin: That's why I like listening to them on audiobook, they're familiar, comforting & funny. I can just relax & let them wash over me, & if I zone out or...
  22. Morgaine

    How do you amuse yourself during the day?

    We don't need a new Discworld guild for the PACE trial lot, there's already a Fool's Guild! Terry Pratchett has definitely helped me to hang to my sanity for the 24 years that I've been ill. I'm listening to the Witches stories on audiobook at the moment. I've nearly finished A Hat Full of Sky...
  23. Morgaine

    Newcastle, UK: Drs Spickett/Newton - any experiences?

    I've seen Dr Spickett, I've PM'd you. Sent from my HTC Desire S using Tapatalk
  24. Morgaine

    Good POTS articles to show reluctant Doctor

    Can anyone recommend some good articles to print out & give a friend of mine whose doctor thinks that if you are not passing out all the time, then you can't have POTS. Preferably some that have suggestions about possible treatments. :Sign Thanks:
  25. Morgaine

    Illustrations of threats issued by Simon Wessely

    I'm usually a reader rather than a poster, thanks to brain fog, but the statement by Nancy Klimas that she'd rather have HIV than ME could be useful to contrast with SW's 'they'd rather have a retrovirus' claim. http://cfs-facts.blogspot.com/2009/10/dr-klimas-on-hiv-versus-cfs.html Sent...