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

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Search results

  1. A

    Viral meningitis

    Anyone with experience of viral meningitis ? Does it require vigorous antivirals ?
  2. A

    Weird Gastro Symptoms

    I could have written this.....my investigations are thwarted by consultant unwilling to accept that no evidence of malabsorption is not the same as evidence of no malabsorption
  3. A

    Advice for learning to breath more deeply?

    Try Buteyko breathing
  4. A

    Trouble swallowing (dysphagia) - neurological ?

    Another dysphagia flare up and no nearer a solution 😢
  5. A

    vertigo

    Epley manoeuvre?
  6. A

    Do I or don't I appeal PIP?

    MR and tribunal if you have to.....you’ve already done all the hard work completing the form ! ! Unfortunately it does take time but your current award is paid until a fresh award is made.
  7. A

    Just got email from my MP over ME

    Have you seen the MAIMES campaign on Dr Sarah Myhills website ? Is your MP signed up to it ?
  8. A

    What do I do about my dementia? (UK)

    If B12 levels are above norm according to routine blood test, how can a GP be persuaded to consider the absorption issue at cellular level and instigate injections ?
  9. A

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

    Walk 20 metres in my shoes Mr Sharpe....before you criticise. There speaks a man with no experience, no compassion and no real understanding of this horrendous illness
  10. A

    LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

    Methinks the gentleman doth protest too much ......
  11. A

    LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

    Transcript of debate link below https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch Comments ?
  12. A

    LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

    Will look forward to reading the transcript so I can digest it bit by bit. Be grateful for the heads up link if you spot it first !
  13. A

    LIVE 3 HOUR DEBATE ON ME NOW (1.30 pm) IN PARLIAMENT

    Managed to watch the last 30 mins.....can anyone summarise and indicate what happens next ?
  14. A

    supporting supplements before amalgam extraction

    I had all my amalgams removed due to acid erosion and comprehensive restorations about 15 years ago. I need some replacing (not for aesthetic reasons) but due to anaphylaxis recently to antibiotics I’m nervous about it. What would you do ?
  15. A

    Is it hard to convince docs to give IV saline?

    Does anyone here have regular iv saline ? If so, how to convince a doctor it’s worth trying as a therapy ?
  16. A

    Myasthenia gravis or cfs

    No I don’t ! But it seems to be the preferred option for my Doctors ! Thing is.....if you don’t fit neatly into one of their boxes you get dropped and passed on to somebody else, and so it begins all over again. Personally I’m not interested in giving the symptoms a name....but I do think...
  17. A

    Myasthenia gravis or cfs

    I’ve jumped through this particular hoop three times now... Seen three different neuros. Had blood tests and MRI scans each time. In the absence of positive tests I am stuck with M.E. label.
  18. A

    Stabbing pains.

    Google Dr Brad Nelson for easy to follow methods of muscle testing
  19. A

    What the H*** is Going On? I feel like I'm dying.

    Are these tests readily available or specialist lab tests ?
  20. A

    Multiple drug and chemical hypersensitivity

    Oh yes. Being told you are a medical conundrum isn't very helpful is it ?
  21. A

    Where did everyone go??

    I’ve no idea what “other” site vies for members ?
  22. A

    Multiple drug and chemical hypersensitivity

    Apart from the extreme anger.....throw in bowel and gastric issues and we can start our own support group !
  23. A

    What makes CFS different from somatoform disorder

    I’m due to see this neurologist again.....usual nhs follow-up. Gimme some good comebacks to challenge this load of cobblers !
  24. A

    Hypersalivation anyone??

    I have the same issue at the moment and am struggling as I have dysphagia too. Any suggestions how to curb this awful problem ?
  25. A

    Need advice on the Ketogenic Diet

    Have you seen Dr Sarah Myhills PK cookbook ? Available on amazon. http://www.drmyhill.co.uk/wiki/My_book_The_PK_Cookbook_-_Go_Paleo-ketogenic_and_get_the_best_of_both_worlds
  26. A

    What makes CFS different from somatoform disorder

    He references the neurosymptoms.org website
  27. A

    What makes CFS different from somatoform disorder

    Did you look at the website neurosymptoms.org ? What do you make of it ?
  28. A

    What makes CFS different from somatoform disorder

    Yes I had nerve conduction and EMG single probe studies to eliminate myasthenia gravis and ms. I’m confused ‍♀️
  29. A

    What makes CFS different from somatoform disorder

    Neurosymptoms.org I was directed to this website by my neurologist. He said he believes all my symptoms are genuine and caused by brain incorrectly reading and sending signals. Treatment : learn to live with it. Hmm....what do you think ?
  30. A

    What makes CFS different from somatoform disorder

    Is functional neurological disorder the new “bucket “ diagnosis ?