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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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Search results

  1. EtherSpin

    Tirzepatide, a weight loss drug that actually works

    that makes a lot of sense and it could be different for almost every patient I've attached a screen shot of the pros/cons/random effects of Semaglutide ("Ozempic") which is the closest alternative to Mounjaro/Tirzepatide and its from this video Dr Gary Linkov wife explains Ozempic mechanisms...
  2. EtherSpin

    Founder of online 'ME/CFS brain retraining' program says his aim is to make a million bucks

    Fog strikes again! I now realise how badly I worded that. I don't have much experience with people who say they've recovered, I've seen it very briefly just once with someone who did Lightning Program and quickly got arrogant about it then was shortly back at square one With regards to guys...
  3. EtherSpin

    Founder of online 'ME/CFS brain retraining' program says his aim is to make a million bucks

    geez imagine how mad Morrison must be right now ! EDIT : I notice Miguel says he had these 'panic attack' episodes with high heart rate but interestingly, high BP also and then after these happening he was apparently deconditioned enough to be in the ME/CFS category ? Thats one of those doctor...
  4. EtherSpin

    CPAP/APAP machine helped any cfsers??

    This is tremendously helpful anecdotal info - really pleased to hear your efforts have ended up giving you the direction to go in and an apparent solution. I'm gonna mention this tidbit to my doc when I weigh up with him which weight loss aide medications I could try VS sleep specialist and...
  5. EtherSpin

    CPAP/APAP machine helped any cfsers??

    Very interesting thread. I tested recently and got a result of mild sleep apnea and am at my highest weight,wife reported the increased snoring over 18 months. My doc is relatively new and trying to wrap his head around my combo of meds from CFS Doc who sadly passed away a couple of years...
  6. EtherSpin

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

    friends with ME/CFS range between sub 1% up to about 10% of their previous physical capacity Cognitive problems are the true kicker that ruins opportunities for education and employment & just a sense of still progressing as a human due to the above, I have had enough years at 1% function to...
  7. EtherSpin

    Ron Davis Hair Analysis (HTMA)

    anything you can say to give me a clue which topics to follow to hear about relevance of Copper for connective tissue / EDS ? thanks in advance!
  8. EtherSpin

    Low dose Naltrexone

    This is s super important data point to have and its good to get any similar stories especially as otherwise, at least for me, this is the single negative account considering its the most common ME/CFS intervention amongst the 30 or so people I know online by name/face who have the condition
  9. EtherSpin

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

    I want to believe this, only problem is, a few people I know who thought it wasn't possible actually got it & now downplay it because since C19, their workplaces have adjusted for them not to need to commute and do 9 to 5 anymore and they save a tonne of time and energy by working remotely. I...
  10. EtherSpin

    Poll: Your Original Antigenic Sin (Early Childhood Infections)

    is this asking which we had first or which was serious ? e.g. I had chickenpox at ~8 and it was not bad, really standard childhood infection BUT EBV when I was about 13 and it had me with temp for weeks and losing about 5 kilograms of weight where I looked gaunt and gawky for a few months after...
  11. EtherSpin

    In Memory of Greeneagledown

    I'm so sorry for what he went through and that the awful situation took him from you too may the things he selflessly wished for (for other people) come to pass and the injustice of the time and funds not yet devoted sufficiently to his and our cause be known
  12. EtherSpin

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    I do the same thing with astonishing regularity so it's nice and actually validating to see you say that it happens to you. I've had people outside the CFS community just mercilessly berate and shame me and say things like "no way your could physically be this stupid!" It's a pleasure to make...
  13. EtherSpin

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    I think we just had a misunderstanding - Im agreeing with you and saying there is very good reason for them to need the item, not just be able to borrow it from time to time or hire it. thanks and have the best day possible :)
  14. EtherSpin

    Whitney Dafoe's 38th Birthday Fundraiser for Ronald W. Davis's research

    YES - it can be seen in any workplace that has multiple departments or faculties doing different work to each other. having your own dedicated piece of equipment is 10X more effective than loaning/borrowing/signing in to use something because you can investigate every little thought bubble you...
  15. EtherSpin

    Skin pain - new & intense (and I can do without it!)

    left field angle that might be useless for you.. I have skin pain in response to heat since glandular fever in 1994 - at the time I wasnt aware cause it was cold season then when summer hit I had excruciating pain if I would run/jog and send my core temp up, go from indoors to outside hot sun...
  16. EtherSpin

    5g rollout and CFS

    here in Australia we had a politician (minister in the incumbent government) who went around and joined protests about the first gen mobile phone towers being allowed within a kilometre of schools. about 15 years later he was elected as Prime Minister on a platform of blanketing us with extra 3G...
  17. EtherSpin

    New treatment being researched: Inspiritol—Today’s Press Release

    Taurine I can't speak to but Theanine is no lightweight - its the reason Green tea hits so different to cup of coffee - no jitters, less chance of insomnia etc but I don't know what its job would be here. its a great anxiolytic due to how safe it is to consume and above and beyond that is an...
  18. EtherSpin

    New treatment being researched: Inspiritol—Today’s Press Release

    I see your point. because Im familiar with only half of whats in it I don't have the same apprehension plus due to my utter lack of a science background I throw my assumptions out the window about the components I've personally tried due to the fact it delivered through inhalation - that may be...
  19. EtherSpin

    New treatment being researched: Inspiritol—Today’s Press Release

    I think I've missed a bit of something here - I saw one of the people using the combination of compounds referenced as being legit/ helpful on Reddit and thought I'd be able to find more clues on here but the tone is very different besides the name being hokey - is there anything setting off...
  20. EtherSpin

    Effect of [CoQ10 Plus NADH] on Fatigue Perception and Health-Related Quality of Life in Individuals with ME/CFS... (Castro-Marrero et al., 2021)

    my hesitation comes from the cost and also doing a couple of months of the study into MitoQ - a supp aiming to be 100X more effective version of CoQ10 and where the company fessed up that the CFS cohort had no physical or cognitive improvement on that derivative
  21. EtherSpin

    Anyone helped by Huperzine & Vinpocetine ?

    ancient quote sorry but just want to say that though Piracetam is in the Nootropic category its not any kind of vasodilator/constrictor that Im aware of and doesn't have those sorts of actions so should be safe - also its ineffective at low dose, of the "Racetam" family its the weakest and big...
  22. EtherSpin

    Martin aka Paused and H.E.L.P treatment

    Wow! this is equal parts fascinating and exciting - obviously I don't know you but just seeing your recent posts I am so glad you have the eye of the Doc really finding some significant metrics and speculating both about the mechanisms at play AND what to do about it - all the best and thanks so...
  23. EtherSpin

    Poll: Are you going ahead with a Booster vaccination?

    I wish that the figures bore out C19 being in same league as colds and flu (as speculated above) but they certainly do not and seeing my own family tree where EDS is the predisposition that's kicked of Rheum arthritis, purpura stuff thats led to organ loss, ME/CFS & POTS and a fair bit more...
  24. EtherSpin

    Poll: Are you going ahead with a Booster vaccination?

    all current arguments about contentious stuff aside, people are certainly treating this 1 virus differently to stuff like swine flu and treating the vaccine differently to any other vaccine ever - and I mean even the long term vax abstainers are acting as if this event never had any parallels...
  25. EtherSpin

    Famous (and sort of famous) ME/CFS sufferers

    That would be taking the piss!
  26. EtherSpin

    Famous (and sort of famous) ME/CFS sufferers

    ah... lets try not to laugh about Piers Morgan actually *soliciting* people to give him miracle cures for Long Covid. best of luck P.M. ! Maybe someone can give him all the heads ups about the Heparin Apheresis treatments in Germany cause he could bring a lot of light to it particularly on...
  27. EtherSpin

    "Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome"

    thanks for the information Lenora :) regarding C19 , we see that vaccination is recommended for people who have been infected (well here in Australia it is anyway) - Im uncertain as to EBV, CMV and Varicella being able to be either caught again OR have a resurgence/reactivation - would the...
  28. EtherSpin

    "Epstein-Barr Virus and the Origin of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome"

    yes! do you mean you wonder RE EBV getting a targeted m-RNA vaccine that 'shows' the body a portion of the virus to indicate where to attack/what to attack , giving it a potentially novel attack vector ? if so, I wonder the same regarding CMV, Chicken Pox/Shingles and a few other select...
  29. EtherSpin

    Björn recovered from severe ME with antivirals (valganciclovir, ritonavir and isentress)

    in your experience (your own plus chatting with others) are there many who were gradually taken down by a succession of such viruses ? e.g. mine goes EBV as kid doing nerve damage, unidentified virus 14 years later confuses docs with EBV numbers though they said isnt possible, begins fatigue...
  30. EtherSpin

    Is he right or wrong?

    let me give context to make my badly stated point a bit better I don't mean it creates anxious people, it subjects us to mechanisms that induce situational anxiety e.g. being disoriented by light and sound sensitivity when crashed, being adrenalised just cause we stood up for 45 seconds etc I...