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

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  1. Paintmyturquoise

    Implications of low LDH (lactate dehydrogenase) in ME?

    Yes I have repetitively low LD.... I get bad muscle pain after I move around at all. I also get muscle dysfunction
  2. Paintmyturquoise

    Mark Hyman MD article: "Getting to the Root Cause of MS and Chronic Fatigue Syndrome"

    You haven't factored in temperature instability...
  3. Paintmyturquoise

    New Documentary: What About ME 2017

    If you download and use the 'Opera' browser, it has a built in VPN, which you can set to US.
  4. Paintmyturquoise

    36bpm HR increase when swallowing: failure of vagus nerve & parasympathetic response

    TY for the info & link! - tests were performed in the morning (as mine was), after 10 mins rest in supine position (from resting) - a single swallow, three swallows, and five swallows one at a time - 7-10 water swallows through a tube (like i did using a straw) - - 'deglutination tachycardia=...
  5. Paintmyturquoise

    36bpm HR increase when swallowing: failure of vagus nerve & parasympathetic response

    Update: today I woke improved a bit, able to move more under 100bpm, light sensitivity reduced, able to eat. Repeat test: 7 swallows of water elevated my heart rate 20bpm only Resting 63- peak 83- dropped back to 61. This return to bradycardia is noted as part of a parasympethic compensation
  6. Paintmyturquoise

    Fludrocortison and blood pressure

    the body adapts to coffee or tea consumption and the diuretic effect stabilises. aka you stop peeing as much
  7. Paintmyturquoise

    did anybody prove their ans is not working properly?

    As a teen I had a noticeable absence of sweating. Since being severe/bedbound I have had excessive sweating, intially with nightsweats and now with talking to people, I overheat and it runs down my legs and arms This worries me :/
  8. Paintmyturquoise

    did anybody prove their ans is not working properly?

    Not sure if this is also something you might be interested in http://forums.phoenixrising.me/index.php?threads/36bpm-hr-increase-when-swallowing-failure-of-vagus-nerve-parasympathetic-response.50743/
  9. Paintmyturquoise

    36bpm HR increase when swallowing: failure of vagus nerve & parasympathetic response

    I've been strictly pacing below my anaerobic threshold and avoided crashing this year- until recently when I had nerve conductancy testing two weeks ago that's completely undid all my hard resting. In PEM, a symptom from last year is again bothering me- high heart rates and breathlessness when...
  10. Paintmyturquoise

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    I think it's on point PR. As others have said, the researchers don't need funding, they received the largest ME/CFS grant ever... The 'newness' came from a study from nov published this year I'd expect there are more studies to come and these small preliminaries are just markers
  11. Paintmyturquoise

    2008 study finding 7 ME/CFS subtypes - Did anything further come out of this?

    There's also this study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921262/ Microbial infections in eight genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis Aim To attempt to reproduce these findings, determine the specificity of this signature to CFS/ME, and test for...
  12. Paintmyturquoise

    Fibromyalgia or ME/CFS?

    I'd love details of this specialist to take to my rheumatologist. This is what happened with me
  13. Paintmyturquoise

    Fibromyalgia or ME/CFS?

    The ear jaw pain is likely TMJ
  14. Paintmyturquoise

    The PRINCE Secondary Study: Persistent Physical Symptoms Reduction Intervention (CBT trial)

    What a waste of research money
  15. Paintmyturquoise

    n-acetylcysteine (NAC) (N-A-C)

    Also this
  16. Paintmyturquoise

    n-acetylcysteine (NAC) (N-A-C)

    I'd suggest that your body has reduced glutathione/NAC levels for a reason. Thus increasing it makes your underlying issue/infection/etc worse Nausea was a problem for me early in this severe crash. It gradually went away. Presumably my body adapted these hormones/proteins/processes so...
  17. Paintmyturquoise

    Pacing with a Heart Rate Monitor

    This is to do with the vagus nerve in the throat being stimulated by the action of swallowing. Worse if you eat fast cos it's culmulative. Dysautonomia affects this reflex. It likely also correlates to a) the neuroimmune activation of PEM (it gets much better when my pacing is better) and b) the...
  18. Paintmyturquoise

    Tracking my Heart Rate Variability (HRV)

    I've read about this, there's a state achieved during meditation called coherence, it resembles sympathetic activity and can cause seemingly bad readings.
  19. Paintmyturquoise

    Detection of Mycotoxins in Patients with CFS

    Very bad when I crashed. I can't smell mold like my Partner can and apparently that's common amongst people affected
  20. Paintmyturquoise

    Aggressive Rest Therapy: My Experience

    Oh and I also meditate whenever I can but sometimes if my HR is up trying to do that just makes me more distressed. Sometimes focussing on something or distracting myself is much more constructive, there's certain times of the day when it's much easier to stabilise my HR so I will sometimes ride...
  21. Paintmyturquoise

    Aggressive Rest Therapy: My Experience

    In the last two weeks I had crazy boredom followed by improved HRV and the best day in a month, followed by a crash from moving house. So I agree it's a good sign I get wired quite easily, usually from emotional stimulation, phone calls or even from a Drs apt. Makes it so hard to sleep let...
  22. Paintmyturquoise

    Poll: Have you received autonomic testing for OI (POTS, NMH, etc.) symptoms

    As far I know many TTT go for 45min. Australia No way I was doing that. NO WAY.
  23. Paintmyturquoise

    Licorice Root for Orthostatic Intolerance

    Licorice depletes potassium. It also raises cortisol.
  24. Paintmyturquoise

    Extreme food sensitivities - any can relate?

    Yeah, I can relate, big time Chicken Coconut wraps Pumpkin Spaghetti squash Lamb Tiny quantities of zucchini Medium quantities of buk choy Honey That's about all. :( it's driving me nuts. Shouldn't even be having honey. I am curious about trying some of the items on your list...
  25. Paintmyturquoise

    Aggressive Rest Therapy: My Experience

    Just generally... I've been pacing with a polar H7 heart monitor and the sweetbeat app which (as well as heart rate variability) shows low frequency (sympathetic/stress) and high frequency (parasympathetic/relaxation) activity. I have severe ME. just to stay below my AT I need to stay in bed...
  26. Paintmyturquoise

    Outcomes & predictors of response from an optimised, multi-disciplinary intervention for CF states

    Are you sure? The ones that have a difference are listed (diff ##) in the brackets, and you can have a confidence value for a negative/nil result. NB I haven't read the study yet - need to sit up and open my laptop and that's not an option right now