• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. J

    Sonya Chowdhury in shock public defence of ME as a biomedical condition ;)

    Someone needs to create a machine that mimics ME and have them ly bedbound with a ton of neuro symptoms, muscle wasting and immanciation then they will stop believing their own BS. Have you not seen the pics of severe ME patients? Why do they have to be put on feeding tubes, have major immune...
  2. J

    Is there a healing process in ME/CFS?

    Hi, Thanks for the reply what kind of OI was it POTS or NMH or the autoimmune type?
  3. J

    Is there a healing process in ME/CFS?

    So heres a question that I am interested in were symptoms much worse in the begining then subside over time. Like have the weird neuro ones sunstantial imporved or gone away like the twitching, blurred vision, jerks, etc?
  4. J

    Is there a healing process in ME/CFS?

    So what do think s the case that if you treat it early and take care of yourself that you have a better chance at long term recovery? I mean like using drugs and rest to help yourself heal? Thanks
  5. J

    Stem Cell Therapy

    Wow didnt realize that they could have such a disastrous effect. I thought they worked then stopped from what I read. Thats quite serious....i have also heard of people that experienced improvement for a long time others that it helped then stopped working.
  6. J

    Aggressive Rest Therapy: My Experience

    I wonder once we finally figure this out is that at onset when the brain starts feeling weird and neuro issues start if the will look at medically inducing a coma for a while to let the insult to the brain heal.
  7. J

    Aggressive Rest Therapy: My Experience

    Did ART help with neuro issues as well? Have you seen significant improvements from this to this day or are you still quite limited? Really curious as I have heard others benefiting from it.
  8. J

    MAFactive cream.

    I have heard it can be rough for people with a lot of neuro issues can anyone erify this?
  9. J

    Wessely - Medical school “banter” denigrating GPs and psychiatrists must stop

    I cant even believe Dr would say this about a massive population of sick patients 17 to 22 million world wide. How utterly disgusting. Shameful. Do you @Jonathan Edwards have him quoting this either via a video, article or minutes from the meeting. This group of people have done so much...
  10. J

    Dr Zaher Nahle's No Spin Zone slides

    Just goes to show how hard a country is trying to deny that they influenced the world at the hands of there homegrown supposed experts if @BurnA is correct that they censored the CBT/GET component.
  11. J

    Stem Cell Therapy

    Can you share the interview or article that would be great if possible. Thanks Justin
  12. J

    Professor Sir Simon Wessely to be made Regius Professor

    The result of the denialist behaviour has to be undone and will be in future. I wonder if this award or whatever it is is to distract the Drs and general public that this man actually was part of influencing the world and delaying research into the people suffering from the chronic disease with...
  13. J

    Active B12 Protocol Basics

    Yes be very careful as if your body is not absorbing potassium and nutrients properly these supplements can tank your potassium....this comes from experience.
  14. J

    Meirleir Poll

    I also am cirious as to the degree of their severity and neuro issues as it seems like those with lots neuro issues stay quite sick and dont experience a remission on the balance of scales
  15. J

    Peter White "retiring from research at the end of this year"

    What would be great is to see that GET did infact cause decline in a substantial cohort of patients. Maybe a well drafted document sent to all patients that were treated with GET and those that were recommended to do GET and significantly declined. Remember other than the UK thats has...
  16. J

    Opioids in the treatment of ME/CFS patients

    If they banned opiates I bet people would be in big trouble I could see it resulting in alot of ppl taking their own lives.
  17. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    How recovered are you at this point? Are you getting back to a normal life?
  18. J

    Video on IVIG in POTS and autoimmune conditions

    Video feed isnt working thanks @helen1
  19. J

    Coyne: Wessely’s muddled views of the good psychotherapy trial: I. Misunderstanding control groups

    This trial and everything this man has said showcases just how little these authors looked at the physical symptoms themselves: Heres some examples: Faciculations why do those all of a sudden happen Myclonus jerks why do those start to happen Muscle atrophy and extreme weight loss why does...
  20. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    I can really relate its aweful. There has been so much feedback in this poll in just 1 day that highlights that this illness is routed neurologically and when I see all this feedback I know that we have just been utterly neglected and dibilitated. Many with true ME seem to be contributing...
  21. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    @Hip anythin neurological including neuropsychological
  22. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    I dont like "liking" your posts but this feedback is important. Great input so far.
  23. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    Hows your quality of life are u homebound? Anything that helps?
  24. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    For me I have twitching, jerks, OI, Blurred vision, pain sometimes not eleviated by meds, anxiety, sleep problems, blurred vision, numbmbness, tingling, weakness, siezure like episodes partially conscious and blank outs. Could be more but thats all I can think about.
  25. J

    Poll: Neurological Symptoms or No Neurological Symptoms

    Have everyone, Starting this Poll just out of curiosity and to inform people that they they are not alone. When you pic your answer *PLEASE NOTE THE NEURO SYMPTOMS YOU EXPERIENCE* *Note most of us get brain fog so keep this one out Im refering to the really weird stuff* This I feel will give...
  26. J

    Question about Opiates

    Another good point.....does advil really do a lot of damage to the stomach lining? Always wondered about this. Good answers anyone?
  27. J

    Question about Opiates

    What is that stuff ill have to look it up? How does it work and is it as effective as opiates?
  28. J

    Question about Opiates

    The opiates caused stomach ulcers?
  29. J

    Famous (and sort of famous) ME/CFS sufferers

    This thread is very important as having auch celebrities come out and say it ruined my career or stiffled ot or whatever the world would take Notice. The PACE trial and CFD have so erroneously misled the world in so that people wont openly admit they have a chronic debilitating illness with no...