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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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very severe

  1. serafim

    People for whom Abilify has stopped working, is your baseline worse than before you started?

    There was a poll in the Abilify FB group according to which 58% of the users for whom Abilify stopped working are worse than before they started it, with only a few people being better. It’s hard to follow up with those who responded to the poll because i assume many of them have left the group...
  2. serafim

    Starting LDA while in a crash — good idea?

    Hi, i’m either in a long, very severe crash right now or i have permanently lowered my baseline. It’s been 2-3 months with no improvement. I’m really suffering. Can barely tolerate screens, no stimulation rest 23 hours a day. Should I start LDA? I seriously cannot afford to lose any more...
  3. serafim

    I’m rapidly deteriorating— can relapsing-remiting ME turn progressive?

    I had a series of stressful events in my life that caused me to crash in early july. ever since then, every time i got PEM, i haven’t recovered from it. My baseline was so unstable it was really hard to gauge what was going to give me PEM. I went from moderate to severe to very severe in 3...
  4. Thebirdman333

    URGENT: Need someone who can assist in New Mexico

    This is all a plea from one of my dearest ME friends. I care for them greatly, and it would mean the world to me if someone could help them, they are in dire need... ------- They write: A plea from a person suffering from very severe myalgic encephalopathy or M.E. The limits imposed by my...
  5. Phoenix Rising Articles

    Article Very Severe ME: Are Intimate Relationships Possible?

    Very Severe ME: Are Intimate Relationships Possible? On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on what it's like living with Very Severe ME … By Rachel M. Hello. I’m Rachel from Queensland...