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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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  1. little_bird

    Anyone have any experience with reactions to flea products or suggestions?

    I haven't specifically had any reaction to flea products, but fly sprays / insect sprays etc make me incredibly ill. Sore throat, relapse, the whole lot. I am very leery of insecticides and non-organic produce as a result.
  2. little_bird

    Patterns of illness

    I first got ill in September 2006 (EBV). Each year after that I have relapsed completely in September - in 2008 my system completely collapsed and that was when I got signed off work / was diagnosed. The relapse lasts until spring, and is quite profound. I'm usually pretty good in spring...
  3. little_bird

    The 3 Ps A Closer Look at the Middle One

    Thanks Rich - and thanks also for all the advice you've offered my Dad, which has filtered down to me and positively affected the way I try to live my life. There's a long way yet to go, but to be relatively (!) stable and without random relapses is really the "base camp" on this particular...
  4. little_bird

    The 3 Ps A Closer Look at the Middle One

    I don't really have anything to add to this thread, as you're all flying well above my head - but I wanted to pop in here to thank my lovely Daddy (Stressman) for working so hard to find a solution for me, and for my sister (I am "Curly"). I've been really fiddling with my diet this year, and...
  5. little_bird

    Healthy until contracted ME/CFS?

    Yes, I'd second (third?) an interest in this. It seems issues like endo / PCOS and similar are fairly common in people with CFS/ME/Fibro, in my experience (I don't have a female friend with CFS/ME or Fibro who hasn't also suffered endo or PCOS, or both).
  6. little_bird

    Please help with survey in analysis of PACE trial - urgent

    little_bird - moderate (but towards the severe end) today 3,3,2,3,3,3,3,2,2,3,3 bad 3,3,3,3,3,3,3,3,3,3,3 good 2,2,2,2,1,2,2,2,1,1,3
  7. little_bird

    Healthy until contracted ME/CFS?

    Hi U&Iraok! Yes - I used to use all sorts of things to prop my adrenalin levels up. Exciting music, work stress, exciting films, dancing around the house, sometimes even seeking out conflict (*innocent look*) - it's not pretty, but I did it, though I had no idea why I was doing it. And it...
  8. little_bird

    Healthy until contracted ME/CFS?

    Thanks for replying, Justy! It's always nice to hear you're not the only one with some of these symptoms (though I am sorry you have them, of course!). I've been a Londoner all my life. I wonder these days whether I ought to move away for my health, but it's such an awful idea because while...
  9. little_bird

    Healthy until contracted ME/CFS?

    What a great thread! I'm going to weigh in ... I had: - pneumonia in infancy - low stamina (I was that kid nobody ever chose for their team at sports) - muscle weakness (rode horses for years - never became unable to mount a horse without help, could never climb on frames or rope, and I...
  10. little_bird

    The H2S Test Poll Part I: ME/CFS Patients

    Hi Rich, I would like to confirm that in my case a relapse looks like this: > start feeling very ill > digestive system stops working > H2S level tests as high > complete collapse At no point during relapse can I tolerate Epsom Salt or Dead Sea Salt baths - they wipe me out...
  11. little_bird

    The H2S Test Poll Part I: ME/CFS Patients

    I ordered two tests. Took the first and got a very strong positive. Went to my GP with the results and instructions sheet, and asked her for the types of antibiotics I felt I needed, based on the symptoms I had (based in turn on Dr. De Meirleirs' breakdown of the likely causes of certain...
  12. little_bird

    The Onset Poll

    Hi Cort, I had a mild version of the symptoms all my life, but after an Epstein-Barr infection (and then two years of working flat-out, so no chance to rest at all, so the infection never stopped), my whole body just stopped working. I checked the second option in the poll, but it doesn't...