• 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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Search results

  1. Molly98

    Is Apheresis an effective treatment for Long Covid and ME?

    Very exciting development, I will watch with interest. @Countrygirl my beautiful friend ❤ ❤🤗 how have you been? Will dm you when I feel up to writing more 😘
  2. Molly98

    Severe Pain When Resting my Head - Struggling to Sleep

    @SeanQHX1 I also suffer with the type of head pain you describe when resting your head on a pillow. The same thing happens, no matter which side I lie on I get a pressure pain build up there, it often spreads to my face and behind my eyes too. I have had this every day for a few years. I...
  3. Molly98

    URGENTLY HELP NEEDED FOR SEVERE ME SUFFERER IN UK

    Thanks Sushi :)
  4. Molly98

    URGENTLY HELP NEEDED FOR SEVERE ME SUFFERER IN UK

    @Berzerkerina I have just tried to PM you with Dr Weir's details but it won't let me, it may be because you a fairly new I don't know. @Sushi @Learner1 @IThinkImTurningJapanese are any of you about and able to help here so that I can pm @Berzerkerina ? or if not can I forward the message via...
  5. Molly98

    URGENTLY HELP NEEDED FOR SEVERE ME SUFFERER IN UK

    Hi @Berzerkerina so sorry to hear how ill your dear friend is. Dr William Weir is one of the most expert ME doctors in the UK. He is based in Harley Street London. and see ME patients privately I will send you a PM with his details. I am not sure if he can travel to patients or not but it...
  6. Molly98

    No pip

    :(:mad:
  7. Molly98

    Janet Dafoe in hospital

    sending love and best wishes @Janet Dafoe (Rose49) :heart::heart::heart:
  8. Molly98

    OMF funds Harvard Collaborative Center and expands Data Center!!!

    So much exciting news from OMF this week, gives me lots of hope :heart::heart::heart: Thank you, team OMF you rock :thumbsup:
  9. Molly98

    New $1 million donation for OMF's ME/CFS research!

    Great news :):thumbsup:
  10. Molly98

    In Memory of Bob: A tribute from his friends

    Hi Vickster, I am so so sorry for your loss, it must have been such an awful shock. My deepest sympathy goes out to you. Welcome to PR and thank you for being here.
  11. Molly98

    In Memory of Bob: A tribute from his friends

    Perhaps we could all release the same color balloon from our bedroom windows at the same time in memory and solidarity. Perhaps this is something we could do each time we lose someone from our community. Something in memory but also something visible that might draw attention that people are...
  12. Molly98

    In Memory of Bob: A tribute from his friends

    So so sorry and saddened to hear this tragic news, my thoughts go out to his family and his friends. Just awful.
  13. Molly98

    $1,000,000 donation to OMF!!!!!

    @Cheesus and anyone else involved, you absolute star, this is the most wonderful news. Thank you for your determination and perseverance. Amazing!!! :balloons::balloons::balloons::balloons::balloons::balloons:
  14. Molly98

    No pip

    @Jessie 107 I really feel for you. It is so stressful and so distressing when they literally lie about your situation in order to stop your getting the benefits that you deserve. It is a horrendous situation and one so many of us face not just with ME but for all other chronic illnesses as...
  15. Molly98

    David Tuller: My brief encounter with Prof Crawley

    Good work @Countrygirl you well scary ME activist you ;) I bet the security guy was trembling and shitting himself when he approached you, given the account he had just heard from EC he had probably called for armed police back up and was probably expecting you to bring out a knife from under...
  16. Molly98

    Rt Hon. Jeremy Corbin MP, leader of the Labour Party, to give opening speech at IiME 2018

    This is just the best news. If it actually happens I will be thrilled.. on cloud nine:balloons: :cocktail::cocktail::balloons: Even better still if he was the PM by then :)
  17. Molly98

    Turning point or point of no return

    @Lou Corsius thank you for sharing this, this is a fantastic letter you have written very thorough and getting all the right points in. I hope that it has an impact. It may also be very useful as a draft or template letter for advocates to use elsewhere if you would be happy with that as it...
  18. Molly98

    The ASA uphold MEA's complaint against the LP again thanks to Dr CS

    I wonder if she would home visit us down in Devon @Countrygirl , I am a bit bored of staring at my bedroom walls and fancy jumping in some circles for the pure novelty, I am not sure that we would not be collapsing in a hysterical fit of giggles though @Countrygirl. I hope you have good bladder...
  19. Molly98

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    :rofl::rofl::rofl: Yes @KME I also thought the Perrin research release was timed to perfection to coincide with the Vogue article with the whole left breast and nipple thingy, surely it can't just be a coincidence? perhaps he has a wife or daughter on the editorial board at Vogue :)
  20. Molly98

    The ASA uphold MEA's complaint against the LP again thanks to Dr CS

    Thank you to the MEA and @charles shepherd. :)
  21. Molly98

    Vogue: We are now glamorous in 'CFS: The Invisible illness affecting millions of women.

    Do we all need to be exposing our left breasts from now on? I may try this new ME / CFS pose next time I visit my docs, see if it helps to get his attention and treatment. Not sure it will have quite the appeal nor be quite so glamorous from a middle age woman with a belly roll..... or two, in...
  22. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Fantastic letter, Thank you @Clair&Mike
  23. Molly98

    Rituximab + IVIG

    Just tagging in @Gingergrrl she's the one to ask on this one :)
  24. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I think your spot on with all of this @Keith Geraghty
  25. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Exactly ....and the :bang-head::bang-head:
  26. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    Just a quick thought, maybe we could buy up as many of the tickets as possible, fill our seats with empty shoes and information on Crawley and ME to counter her narrative, so that she hardly has any audience to preach too, just rows of empty shoes on empty seats
  27. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    I wonder if you have to be from the Bristol area to take part?
  28. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    It does say on their Web page are you interested in becoming a speaker I wonder if there is anyone with good public speaking skills who could do a talk from the patients perspective and counter Crawley's story? @Jenny TipsforME your in the Bristol area, have you got any ideas on this?
  29. Molly98

    Esther Crawley TEDxBristol Disrupting Your View Of ME

    :jaw-drop::aghhh::cry::mad::bang-head: Jesus Mary and St Joseph!!! Is there no end to her antics! Would someone find this woman a new job? Tesco's checkout maybe where she can't do much damage. Asparagus packer? Camel herder in the Sahara desert? Anywhere, away from children and away from...
  30. Molly98

    Good article in Daily Express on Unrest

    Couldn't agree more... on all points :) Sadly I am now Newspaperless.