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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. S

    I've been here for 30 years.

    and just to say - because following covid and m.e twitter recently - i totally believe that if you are lucky - then a mind only approach CAN work because whatever is going on is going on in the mindbody system - the immune system is doing something the cns is doing something so if you can find a...
  2. S

    I've been here for 30 years.

    watching cuomo -i think his heart in his the righ place but so depressing to watch another person thrashing about the dark like we have been doing for the past decades. Two things I want you to know - The Chris Cuomo Project (substack.com)
  3. S

    I've been here for 30 years.

    Over the last thirty years I have done every diet imaginable - vegan, carnivore, 'alkaline', I've fasted for at least ten days at least five times - and at the same time there are those who say each one of these is the worst thing possible. You know what I've found helps - is to lie on the floor...
  4. S

    I've been here for 30 years.

    What's so weird about it is that I think we follow these things when we get a short term result - if I hadn't I wouldn't have done any of them. Even a few years ago I got a good few weeks out of extreme fasting and carnivore. So I did that for a year! It wasn't only extremely difficult it was...
  5. S

    I've been here for 30 years.

    And looking back at my past posts - and now having read all about covid and long covid - the idea that there is a virus active that has been reactivated - that I told myself was bs - looks a lot more likely. The studies they are showing that even with 'controls' - cohorts that didn't have any...
  6. S

    I've been here for 30 years.

    Having said all this - if you're in the position that I was for twenty odd years or so - and believed anybody who said that it was all down to 'one thing' - at least one physical thing - I'd be prepared to call that bullshit. Because I believed that for twenty ears and tried everything -...
  7. S

    I've been here for 30 years.

    What I would like to add is that I absolutely don't think that M.E - and I don't know about covid - can't be helped - and maybe even all the way to a cure with a mindbody approach - I do believe that because in November last year I felt like I was cured. I felt like the cns approach - was key...
  8. S

    I've been here for 30 years.

    So here I am after getting covid and worrying about it - and here's the reality. It's worse than I thought. The symptoms are similar but worse - I wake up with a 'flu' - different to my m.e symptoms which were pains, and feeling like I was being pinned down. Now it's like being in a fever - no...
  9. S

    I've been here for 30 years.

    Thanks Lenora ! Very true. I'd found myself in stuck in anger - especially at covid and how the establishment seems to be making the exact same mistakes as with M.E - ie pretending it doesn't exist. Part of learning how to have a good life even with all of this, is indeed to learn how to accept...
  10. S

    I've been here for 30 years.

    Hi Linus, yes diagnosed 30 years ago. Been on and off this account as long as I can remember - but not been on for many years so I may have accumulated different user names by now.
  11. S

    I've been here for 30 years.

    i've tried somatic - so feeling the anger, frustration feelings etc. I've done that for hours a day for the past few years. It's seemed the best approach - but often I haven't been able to get past that barrier of 'no' - no! I've tried all sorts of deep somatic approaches to this but still can't...
  12. S

    I've been here for 30 years.

    i right now cannot accept. yet I'm pretty sure that's pretty close to the source of my hell. If anyone knows how to accept I'd be very grateful
  13. S

    I've been here for 30 years.

    I wish I had an answer - like do this and that. If the cns is the main player for you then the fear of being ill for the rest of your life might be constantly active. And to defeat that foe, you need to find a way to get in touch with your deepest fears and feelings and say 'f you' to them. And...
  14. S

    I've been here for 30 years.

    so now what? where do i go , where do you go from here?
  15. S

    I've been here for 30 years.

    You can try what I did - alcohol, cigarettes - literally try and kill the pain and frustration. I thought I'd done that and yet with this bout of covid here I am again. So here it is
  16. S

    I've been here for 30 years.

    I'm screaming into the wind. I hate this fintg thing more than anything that I've ever hated and I didn't know that I had the capacity to hate something so much. And where does that leave me or you to be stuck there?
  17. S

    I've been here for 30 years.

    the same thing - and if your brain has gone nuts your mind will go nuts and vice versa. Just do what you can - it's a system - input into that system as best you can because as soon as you start fighting it and trying to impose your will on it - you will lose - because IT'S ALL YOU. If we get a...
  18. S

    I've been here for 30 years.

    I alternated between being 'in my mind' and 'in my body'-that was just STUPID. It's just not how it works - there isn't some magic cell in our bodies that doesn't respond to our minds. And that doesn't mean it's ALL IN YOUR MIND - it means - whatever is going on - is going on in BOTH. And that...
  19. S

    I've been here for 30 years.

    I was always looking for something to make me feel better 100%. I wanted to find the cause and the cure and the solution. I did everything in my being to make that happen. And it never worked - and usually made it worse. And looking on this website - at the various protocols - the ones that...
  20. S

    I've been here for 30 years.

    There IS stuff you can do to do feel better. It might not make you 100% but there is always something that can make you feel better a bit. And if there isn't there's always something that you can do to make yourself feel better about feeling in such hell.
  21. S

    I've been here for 30 years.

    Hi All I've been here for 30 years. I've posted that I couldn't take it anymore. I left and came back many times. I've researched every single protocol availalble and tried it - starting with submerging myself in cold baths when I was 16 years old to doing 10 day fasts and anything you can...
  22. S

    Hydrogen (H2) therapy, helpful for ME/CFS patients?

    I became absolutely convinced that Hydrogen would be a magic cure. I tried the gas - it made me very sick. I persevered and bought a machine. It made me sick again so it's sitting in a corner unused for the past six months. However - I did buy a little water machine - it was about £200 but if...
  23. S

    Has anyone had a Covid vaccine yet?

    I would love to have the vaccine. I managed to get a gp to call me back and was told that M.E is not an 'underlying condition'. Hopefully others here will have a better outcome with a different GP. I got covid in March and would not wish it on anybody - I couldn't breathe to the point that I...
  24. S

    it makes me want to spit

    I don't understand how at this point it is even possible to be 'properly diagnosed'. And I also don't understand the antipathy on this forum to anyone who is ill and incapacipated and living a life of hell who doesn't quite fit a so-called diagnosis of 'm.e/cfs'. We are all in this together -...
  25. S

    Voices From the Shadows

    A big heartfelt thankyou to the maker's of this - I can't imagine how difficult it must have been. Watching this from an M.E point of view - very strange - in tears - and not able to make any cogent points. I can't say I've often watched a documentary / film where I could relate to every story -...
  26. S

    Appreciating Dr. Montoya

    Sorry - forgot to post the link - here it is : http://www.youtube.com/watch?v=Riybtt6SChU
  27. S

    Appreciating Dr. Montoya

    The first time in my life - and I've had this at least since aged 16 - and at 'most' since aged 18 - so 20ish years either way. I've been through every test -'westernd medicne' style or 'alternative' etc etc - anyway, - tonight , I'm watching Dr Montoya's presentation on youtoube and I can...