• 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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    Comment by 'Ineedausername' in 'Shouting into the void'

    Everything you've written is totally relatable and understandable. Sometimes we have to sagely nod our heads to ourselves, admit it's shite and drink the gin.
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    I have this hope for making a healing center for ME/CFS

    Salt water floating? I was thinking swimming pool but the chlorine would be a no but imagine submerging in warm water and floating with no effort? Bliss...
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    I have this hope for making a healing center for ME/CFS

    @jesse's mom aww I love those ideas. There's no template on how to do this so teaching everyone the skills to how to navigate the terrain is perfect.
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    I have this hope for making a healing center for ME/CFS

    Love this! I've actually tried looking on line for it in the UK (and obviously found nothing). Also looked for a holiday rental suitable ie the promise of no perfumes, air purifier, flexible or late check out times, a welcome basket that my mum can actually use that sort of thing. My dream is...
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    DESPERATLEY IN NEED OF HELP ADVICE PLEASE (MAST CELL /SUPER REACTIVE ETC)

    Hi @cfsbloke1234 sorry I see this is old but just in case... My mum who is cf/mast cell was reactive to everything but courgettes foodwise. Sodium cromoligcate (Nalcrom) is your friend on that. All mast cell patients need to start meds S....L...O.. .W like ridiculously slow. Think snail...
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    freefall

    No words of wisdom but I'm sending you lots of love. Hope the crash is over soon.
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    Remission success. How?

    Wow this is fantastic! Sending the best of luck to the two who are still in the treatment process. Absolutely elated to read about the remission stories here and long may it continue. :heart:
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    ME/CF/EBV/EDS/Menopause - carer looking for knowledge.

    So sorry to read your troubles @Misfit Toy I read your message and was inspired to do more googling. Found a Dr who does bioidentical hrt, hormone testing and adrenal testing. Read patient reviews one was from an CF/ME patient. Anyway I've sent an email outlining everything and asking if the...
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    ME/CF/EBV/EDS/Menopause - carer looking for knowledge.

    Hi I'm new and posted in the intro subject yesterday I'm a full time carer looking after my very wonderful mum. She is diagnosed with: EBV Mast cell Disease and allergies (But not MCAS - she might have that specifically but the combo of to sick and to expensive meant we just wanted her on...