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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Enid

    Overlap between CFS and Depression?

    Well those quotes are a turn up for the books (from SW). Can't read all the thread through but will add my tuppence worth - the involvement of psychiatry historically has had a disasterous effect over decades for ME sufferers here. That includes playing with little knowledge of the real science...
  2. Enid

    Night sweats - revisited

    Interesting maryb - playing with diets myself (sweats occur at any time, raised glands etc),
  3. Enid

    ARTICLE -- “The Real Me is Returning” | Lyme Disease & the Gerson Therapy

    Lyme - one of many suspected whether initial or latent, overcoming/crashing the immune system in the light of findings seems common to very many viral/bacterial infections. Is this the one and only - I doubt, but very happy to hear of treatment that improves.
  4. Enid

    Famous report of 1934 LA outbreak

    Interesting Persimmon - poliomyelitis much on my Neurologist's mind (mine too paralysed muscles affecting walking to breathing and swallowing).
  5. Enid

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    Well Graham I ain't so slow now - can recognise the plug in the sink again without the aid of PACE - this is c.... - some form of encephalitis struck (ie infection in the nervous system). Lets get on with real medicine and science. And never ever apologise in the face of this c... - they have...
  6. Enid

    Has anyone been completely cured of CFS?

    Not that I know and I know a number afflicted. Best I heard is living with a reduced lifestyle, medicated for various symptoms - if Docs can find - and hoping all they missed in the first place does not return so severely.
  7. Enid

    Narcolepsy is an auto-immune disorder

    Great discovery Hoping - yes very much part of my own problems too. How well research moves on now.
  8. Enid

    What works for mid-of-night awakenings?

    Much experienced over years - suddenly wired and tired awakenings - I've tended to go along with it (over active adrenals ?) and found something to do whilst the endocrine system settles down and sleep returns again.
  9. Enid

    Complete anhedonia (loss of feelings) as a ME symptom. Anyone else who has it?

    Exploring that a little Redo - yes I was aware of it off and on and suspect some brain damage in the area involved. It is indeed a great relief when normal responses return again. Just don't worry - actually more compassionate than those about me - so one up. !
  10. Enid

    Stupid/Cranky and arbitrary doctors: rant warning!

    Many symptoms seem too complicated for them - I heard of a local surgery carrying a message to waiting patients - "no more than 2 or three symptoms".
  11. Enid

    Health News Ireland: Tom Kindlon: The Fight of his Life

    All very apt - no single - and we together will force medicine forward.
  12. Enid

    Mind/Body

    NO ROOM FOR EGOS IN ME.- If you want to help - help. My psychiatrist (and pathetic junior Docs once said "all in your mind) " - why anyone supports this c... defeats me.
  13. Enid

    The immune, auto-immune and non-immune: 30 June post by Jorgen Jelstadt

    Met that 12 years ago Sasha - just hope this is not a case of reinventing the wheel.
  14. Enid

    Health News Ireland: Tom Kindlon: The Fight of his Life

    Stuck with it are we not until the current and marvellous science (those working very hard now to understand) solve - whoopee for them - in the meantime did you know thousands even millions blighted.
  15. Enid

    Mind/Body

    @ A.B. - much appreciate your comments - there seems to be confusion in definitions/being used variously and at the moment loosely (stress) - some confusion of levels to bring metaphysics into the picture. The "world" of the psychos has been so much misused by some in the past (still is) -...
  16. Enid

    Can't breathe when laying on my right side

    Any chance you could treat mono-n, just recalling all your symptoms (not a vein to be found then, all baffled). I know all your symptoms Valentijn and will you treat mono.
  17. Enid

    Mind/Body

    I wish I could say a thousand times - there is nothing wrong with reason, much to do with slow cognition/recognition, often painful hearing, sight(muscular) accommodation - keep going you guys it eases and does improve.
  18. Enid

    Patients to DHHS: Fix the Broken ME/CFS Case Definitions NOW!

    Those in the know have tried over years to rename - bearing in mind the systems affected - neuro/endocrine/immune - and no single symptom fully describes though may predominate at given times. Now where is a definition - most likely to me the immune system.
  19. Enid

    'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

    "Recovery" with PACE - are they so ignorant, simple, out of ducking chair mentality, turning their backs on modern science - we've met it before - witches - this time not burned at their stake. Pity they have no experience of the errors of history. Are you firestorm Shephard influenced - a...
  20. Enid

    Why ME/CFS is NOT an appropriate name

    Don't even bother about it Sammy - this disease known to a select few still requires definition when all is known.
  21. Enid

    (PACE Trial) Response to FoI request: Numbers within normal ranges for CFQ and SF36 PF at baseline

    Big sigh Bob - guess I'm plus 3% one day and minus the next - what crashing idiots these people who try to fit into their stats are.
  22. Enid

    BMJ: Are there sleep-specific phenotypes in patients with chronic fatigue syndrome?

    Oh are they on the way then firestormm....and no psychos here - whoopee - thought you supported psychiatry once I so kept away. Seeing the wood for the trees comes to mind., Do you think we are so stupid... obviously yes.
  23. Enid

    BMJ: Let the patient revoloution begin (lots of stuff like this about at the moment, here's a eg).

    Bump - this is a change of simply the culture of the whole of medicine.....that's your doc, my doc round the corner who we have carried for too long.
  24. Enid

    KDM abx protocol for borrelia

    I'd stick with KDM any day - rest crap...apologies - ignorant.
  25. Enid

    Why ME/CFS is NOT an appropriate name

    Tough one - they have tried over years (I mean those in the know) - NEI - neurology, endocrinology, immunology once offered - in the meantime ME for me.
  26. Enid

    Could autoantibodies to muscarinic acetylcholine receptors underpin ME/CFS?

    Very interesting - though as a non scientist. What tips the immune system into an auto-immune state - unresolved infection, genetic weakness ( my brother - a Doc) is now diagnosed with autoimmunity - liver). But we are both in our 70s so why now. And it appears ME is as much to do with youth as...
  27. Enid

    New Study by KDM: "...alterations of intestinal microbiota in ME/CFS patients".

    Thanks natasha - it is good to see KDM's continuing research and findings.
  28. Enid

    Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

    Nerves in general Hip - vagus or otherwise. This was one of my specialist Doc's conclusion but no more investigation or treatment offered (MS/Polio ruled out). But this is usual in the UK NHS. The point he was making was CNS damage.
  29. Enid

    Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

    Philosophy aside for a moment one of my Docs said "myelin sheath damage" - and one of the many possible viruses/infection probable.