• 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. PhoenixDown

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    If we reject the CDC 1994 criteria then we must also reject the (pre Covid) 250,000 ME patients in the UK figure because that's based upon the upper range (0.4% or 1 in 250) of the CDC 1994 criteria. According to the 2014 London criteria (Co-Written by Charles Shepherd) ME affects 1 per 1000...
  2. PhoenixDown

    IM Vitamin C Injections for hEDS... anyone tried this???

    It wasn't a crash, it was permanent damage to my knees. I exerted my self beyond my deterioration threshold which always causes me permanent loss of function.
  3. PhoenixDown

    Why would CFS symptoms continually worsen overtime ?

    Which ME criteria were you diagnosed under? If some body is bodybuilding they certainly don't have the same type of ME that Melvin Ramsey first described back in the 1950s.
  4. PhoenixDown

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    Cort have you been moonlighting as Tyrrell's Classic Workshop? That guy's car collection, wow, with the Lamborghini Countach seems like a serious asset. Welcome back.
  5. PhoenixDown

    Cort Johnson, the Founder of Phoenix Rising, Returns to Lead the Forum!

    What did he teach you? All I remember was patients pushing a bunch of supplements that didn't work.
  6. PhoenixDown

    Post-Exertional Symptom Exacerbation (PESE)

    I believe that patients who suffer LTSE - Long Term Symptom Exacerbation, should be given a new diagnosis especially if they experience permanent deterioration from exercise like me.
  7. PhoenixDown

    Why would CFS symptoms continually worsen overtime ?

    There are plenty of ME patients who's symptoms progress naturally over time. Then there are those of us who experience Consequential Progression or Deteriorative Symptoms, meaning we deteriorate due to exercise or sensory overload. I'm 100% bed bound, have been for years now.
  8. PhoenixDown

    Anyone ever managed to get back to where they were???

    I can't take pain killers because they don't prevent the permanent damage I experience when I exert myself beyond my deteriation threshold. I think patients who experience LTSE - Long Term Symptom Exacerbation should be labelled as having type 2 ME or be given a different diagnosis all together...
  9. PhoenixDown

    Article Dr. Nina Muirhead: ME Patient and Advocate in the UK

    Pity there aren't any treatments for ME apart from consideration to prevent deterioration.
  10. PhoenixDown

    The Role of Psychotherapy in the Care of Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    Sounds like they've seen The Matrix too many times. Seriously I'm sorry you were treated by these quacks, what country are you from?
  11. PhoenixDown

    IM Vitamin C Injections for hEDS... anyone tried this???

    Back in 2012 l also traveled down to London to get a Myers' Cocktail injection which did didn't improve my symptoms but the journey made my ME permanently worse. If it wasn't for patient recommendations I would never have made that journey.
  12. PhoenixDown

    Housing or Section 8, etc in the USA

    A bunch of users left in late 2017 due to a major disagreement with the moderators here. PM me for more info.
  13. PhoenixDown

    IM Vitamin C Injections for hEDS... anyone tried this???

    I think this is most probably bs... bad science. I've tried all sorts of vitamin and supplement treatments over the years including injecting and I never got one iota of benefit from them. Save your money.
  14. PhoenixDown

    When did your unrefreshing sleep start?

    My unrefreshing sleep started in 2001 when I started college. I didn't get ME until 2007 very gradually. I only felt refreshed after 10 or 11 hours of sleep which I scarcely managed to get. Sleep deprevation has made my ME permanently worse because it lowers my PTLT, resulting in many over...
  15. PhoenixDown

    Pseudobulbar affect, emotional lability

    The definition of ME was hijacked by both patients and psychologists alike, see: https://www.s4me.info/threads/who-hijacked-me.28199/
  16. PhoenixDown

    Somatoform / Conversion Disorder Diagnosis

    There is absolutely no convincing body of objective evidence that proves Somatoform / Somatization / Conversion disorder exists. They should be given no more credibility than the hypothesis of misaligned chakras or too much negative orgone energy or evil fairies causing physical syndromes.
  17. PhoenixDown

    Council / social housing offer

    Before I moved in to my current home, I desperately needed a doctor's note to assist me with my housing application. My old house was noisy, dusty(I have a severe allergy to dust), mouldy, had a steep flight of steps, and had two massive steps to get to the bathroom. I was being deprived of good...
  18. PhoenixDown

    Why Does Long COVID get $1.15 billion and ME/CFS only $60 million??

    That's a good question. I believe there should be a separate diagnosis for those who suffer harm from exercise, I think SEID is the best available name but I am open to suggestions. That's also good.
  19. PhoenixDown

    Why Does Long COVID get $1.15 billion and ME/CFS only $60 million??

    The CDC 1994 definition is fraudulent as it does not exclusively recruit patients who suffer an adverse reaction to exercise (real ME). 0.89% seems way too high. For example this study (https://pubmed.ncbi.nlm.nih.gov/21794183/) gives a prevalence of 0.19% based upon the CDC 1994 criteria which...
  20. PhoenixDown

    Exercise Intolerance vs. PEM/Exertion Intolerance

    I would add that there is also LTSE - Long Term Symptom Exacerbation which is not normally talked about in research and ME criteria.
  21. PhoenixDown

    Homeopathic remedies for COVID-19 symptoms

    No offense but I think homeopathy is quack medicine and any improvement is a co-incidental fluctuation of your illness.
  22. PhoenixDown

    Advance decision / living will

    I think you mean to say they don't believe in ME. I'm also 100% bed bound and can't talk so I know how you feel.
  23. PhoenixDown

    Anyone have good - or bad - expereince with gabapentin?

    I found that it masks symptoms temporarily but doesn't prevent the indefinite worsening of my condition that I experience from exerting myself. It makes me impulsive and more likely to exert myself. I built up tolerance to it a long time ago.
  24. PhoenixDown

    Poll: When do you brutally honestly think there will be a cure for ME?

    My experience is the opposite, 15 years of ME that has never remitted and over exertion has caused permanent worsening. I'm not sure when there will be a cure but just having a test that proves we have ME and that the symptoms are consequential (it progresses) would go a long way toward helping...
  25. PhoenixDown

    Fibromyalgia (FM): Diagnostic Criteria

    That is dangerous quackery as far as I'm concerned. I had my progressive ME misdiagnosed as Fibromyalgia and was treated horribly as a result. The main problem with a Fibromyalgia diagnosis is that your symptoms will be treated as if they are inconsequential. Peter White in this video: agrees...
  26. PhoenixDown

    Anyone barely experience PEM at all?

    If exercise doesn't make you worse then you don't have real ME. Good luck looking for answers, do you have a doctor who believes you?
  27. PhoenixDown

    Visitors to covid ICU patients improve patient outcome

    I don't accept that having visitors reduces the chance of death, it sounds like BPS propaganda. It might help the patient feel better and may be reduce depression.
  28. PhoenixDown

    Take the poll: What are YOUR sensitivies?

    What do you mean by worse? Do you mean lowering of the PEM threshold? PEM severity? PEM duration? Other symptoms?
  29. PhoenixDown

    Illness before illness?

    Before I got ME I had 6 years of sleep disturbance, chronic fatigue, and 13 years of allergies.
  30. PhoenixDown

    SEID vs CFS vs ME

    If they no longer have PEM or exertion intolerance they should be re-diagnosed with post-ME syndrome (or post-SEID). Treatment should continue if it helps.