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

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Search results

  1. A

    I gotta stop playing the victim card, I think...

    I have never felt like a victim to this disease to be a victim of any thing implies some external malicious intent do you feel like a victim if you fall and break a bone no it is just one of those unpleasant life events that can happen to anyone . psychologising diseases has never helped anyone...
  2. A

    Sensory Friendly Shopping

    yes it looks great now if they would just remove all the other customers I might be able to spend five minutes in such a shop without risking pem .
  3. A

    Dr Speight: The Seizing of UK children with ME by social services is becoming a national scandal

    british lawyers in my experience run shy of taking on the establishment unless the client is rich or famous .
  4. A

    Sleep issues is it worth seeing sleep specialists?

    sleep hygiene advice may be helpful for otherwise healthy people but I spent more than a decade trying to fit into the recognised daily norms no help whatsoever and now I tend to sleep when I need too usually between noon and 6 pm if my body and brain doesn't fit in with society why should I...
  5. A

    Full-length video on the historic scandalous medical treatment of ME by Dr Macintyre

    I came across this video some years ago the mixture of outright stupidity and wilful fraud made me angry then . now I know both things are and probably have always been a part of the medical profession . the profession as a whole has just had 7o years of positive marketing . I wonder if the...
  6. A

    CFS/ME?

    I had excessive sweating from near the beginning of when I got ill with m.e if I remember correctly a few others with m.e also reported the same symptom . I used to have at least 3 big cotton handkerchiefs on me at all time it was always more noticeable after a walk to the shops when standing...
  7. A

    How do you actually get a diagnosis on the NHS?

    I would suggest finding a new gp asap but it could still be difficult to actually find one who is still in the early stage of actually being keen and interested in their patients rather than ticking all the procedural boxes.
  8. A

    Autoimmune video series starts Nov 26

    I would think twice about white listing anything because that turns of your pc s security sounds very dodgy it is not unknown for scammers to target people with various illnesses and diseases so be aware .
  9. A

    Autoimmune video series starts Nov 26

    I would think twice about white listing anything because that turns of your pc s security sounds very dodgy it is not unknown for scammers to target people with various illnesses and diseases so be aware .
  10. A

    My Experience Starting Armodafinil (Nuvigil Generic) - Hopeful!

    hope you see continuing improvement and a speedy reduction in adverse effects as your body gets used to the new med.
  11. A

    Comment by 'alkt' in 'My research obsession'

    damn your pushing it a bit with four fish lol . when you have a disease the world wants to ignore what other option is there but to search for answers yourself . nicely written piece .
  12. A

    Persistant Brain Fog, Insomnia, Anhedonia and Headaches

    is your room house well ventilated . just a thought but carbon monoxide poisoning can cause many of your symptoms .
  13. A

    What is your lifestyle like?

    unfortunate choice of words lifestyle implies choice in how we live . my so called choices have become more limited as each decade passes . I am mostly house bound but fortunate in that I am very rarely bedbound . if I had not moved back home with my parents I probably would not be here today ...
  14. A

    CFRSC+OMF 2nd Community Symposium registration!

    spelling and m e their not on the best of terms. writing any long posts always gives me lots of red lines and then a headache from trying to correct all the errors.
  15. A

    Comment by 'alkt' in 'Blueberry Season & Gastroparesis'

    I b s is another waste basket diagnosis so much cheaper than all the very expensive investigations also of course it is not invasive so giving the diagnosis of ibs covers pretty much anything that irritates/inflames your bowels.
  16. A

    Functional Status and Well-Being in People with ME/CFS vs MS and Healthy Controls (2018) Kingdon

    another study based on self report forms doctors who wont listen to patients are not likely to bother taking this in either .
  17. A

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    we all certainly hope a lot of good things happen for you. you have worked hard for a better future for yourself . and it is nice to hear good things.
  18. A

    Nietzsche and Illness

    @debored13 the blogspot link seems to have been removed .
  19. A

    Physio - what to ask for?

    in my experience a physio will concentrate on helping you with the immediate problem you present with . for trapped pinched nerves the show you some helpful exercises and of course do some hands on assessment . I have no doubt they will discuss any postural issues you bring up . hope they can be...
  20. A

    Levetiracetam improves symptoms of multiple chemical sensitivity

    a single patient observation is not some thing you can trust . to be honest I do not know why it was even published .
  21. A

    Unable to sleep because dread wake up any tips?

    unfortunately this wont help I tried the sleep hygiene route for the first decade of this illness it only made things worse . now I sleep mainly in the day time . I see it as listening to what my body needs rather than listening to what so called professionals think .
  22. A

    CNN: POTS--A doctor said it was all in her head--'the most common condition you've never heard of'

    not surprising same story as m e and f m .lazy/uncaring professionals jumping to easy its all in your head dx because that abnegates their supposed duty of care to patients 200 hundred years of willful ignorance and until there are serious consequences for their careers it will not change .
  23. A

    Comment by 'alkt' in 'Graduating from the Forum'

    best wishes and truly hope you manage to care for yourself in the long term .
  24. A

    Petition and public complaint to AFME (UK)

    signed and shared . completely looks like afme is a stooge for the psych lot an old trick of security services infiltrate and then control .
  25. A

    Jaw, tongue pain & swelling

    just to add jaw pain specially when radiating out from the ear can be caused by pinched nerves in the neck which can also radiate down through the shoulder . I have had this problem for some years now I was hoping it was an ear or throat infection so it could be easily treated rather than being...
  26. A

    MPs demand more biomedical research for cruel 'death sentence' disease MEA

    I do not like the headline grabbing "death sentence " disease that will scare newly diagnosed people unnecessarily and used out of context would harm our cause .
  27. A

    New paper by Dr Geraghty:ME &BPS :a review of patient harm & distress in the medical encounter

    the abstract looks like common sense but in effect tells doctors to lie to patients in order to gain trust and does not go into any detail about the fraudulent contested bps research .
  28. A

    New Alzheimer’s Study - Guess What Was Hanging Out In Brain Tissues - HHV-6A & HHV-7

    there is also research into insulin and its possible influence/cause of certain types of alzheimers
  29. A

    Pyroluria, is it real? I'm really skeptical and here is why.

    I find the mention of copper very interesting because the first seven or eight years I was ill with m.e my hands and sweat frequently smelled of copper as if I had been handling lots of copper coins .
  30. A

    New Alzheimer’s Study - Guess What Was Hanging Out In Brain Tissues - HHV-6A & HHV-7

    its the same kind of controversy that transpired after two Australians came up with heliobacter pylori as the main culprit for stomach ulcers the changing paradigms of the old excepted ideas being forced out by actual science rather than the beliefs of older established views