• 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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    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    The depth of mind and understanding of great scientists sometimes manifests itself through the simplest statements, I think the following (at 11:10) is a perfect example: "Crashing re-initiates the disease over and over again"
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    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    Great segment when he says that most people who think they know this disease only know the patients that are well enough to move around, but if you get to see the severes, "and there is a large number of them", he says, "they're totally isolated… and they have very little support…it's a...
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    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Very compelling and moving. Thank you so much @JenB for this one-of-a-kind piece of advocacy. Historical, even. I found everything great about this presentation, and loved this one part in particular: "Chronic fatigue syndrome... For decades that's the name that meant that this (picture of...
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    Things are heating up in Canada!

    This newsclip is just perfect to show how it's done - first you ask for something, and if you are not satisfied, you ask LOUDER! Simple as that! Thank you @ScottTriGuy. If every PwMe in Canada were like you, things would move faster for sure (and thanks to everyone else involved in this event...
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    The Lost Years

    16 years, the last 4 being the worst. I see reason to hope when I look outwardly at how science and awareness are progressing, but I can't feel this hope when I consider how my body is so stubbornly stuck. For that, I have to trade hope for resilience, toughing things out, courage, etc...
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    Edward Shorter to give talk on CFS at NIH

    Slightly off topic but I can't help being reminded of the CIHR anonymous review no1, responsible for the rejection of the canadian catalyst grant application for ME/CFS, a review I believe @Sidereal called "a sinister piece of garbage" (a euphemism). Could that have been Shorter himself...
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    Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

    To add to what @ash0787 said above, Ron Davis says this precision device would thus allow to measure PEM at a cellular level (no need to stress the entire person into PEM… just blood cells), he says it would also constitute by far the fastest way to test drugs (without using humans entire, or...
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    In memory of Justin Noble - Justin30 on PR

    I never had the chance of interacting directly with him but being a fellow canadian of his' I followed closely the recent discussion on the CIHR catalyst grant refusal for ME/CFS. His many comments there conveyed such a powerful and desperate sense of how humanely wrong and unfair that refusal...
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    Soundtrack of your CFS life…

    From a musician who was himself afflicted with ME/CFS, Keith Jarrett, considered by many as one of the greatest jazz pianists there is. While ill there were times when he feared he could never play again. In his strong years he was a master at half hour long odyssey-like improvisations (e.g...
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    Peter White (PACE) in the Guardian

    This desperate article doesn't stand a chance against everything which is now out there regarding the PACE trial, all the investigation, the re-analysis, it doesn't stand a chance against the very comments below it, it doesn't stand a chance against logic pure and simple… But still, I am...
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    Discouraging News for Canadian ME Patients

    I can't elaborate too much but can assure whoever here needs it, that, even though he is a newcomer, Alain Moreau, 1 - already has a very good notion of the nature of this illness, 2 - is very committed to studying it ever more and to stay the course no matter what, it is not a temporary...
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    Naviaux et. al.: Metabolic features of chronic fatigue syndrome

    I apologize if the following has already been addressed a dozen times thusfar… I have a question about the relationship between PEM and hypometabolism. The "dauer" state to me evokes a static state with little fluctuations, whereas my experience of this illness is roller coaster like - from...
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    Body Listening Project Study Invite

    Hi Kelly - On the theme of "body listening" I would share with you this one thought which you might not expect but I hope it can be of help for your project: ME/CFS is a rare instance of an illness where listening to your body is actually a bad idea! When you feel the very first sign of...
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    Please help with my postgrad diploma psychology research project!

    In addition to the isolation that comes from the general skeptical attitude towards this illness, there is a another form of isolation ME/CFS sufferers experience (the more severe sufferers), one that stems from the nature of the illness itself, whereby the very act of interacting with others...
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    Soundtrack of your CFS life…

    This thread is a great idea! I hope @SOnset joins it, I find his use of music in his videos so well done. The following would be my pick. Sorry if it is a bit on the heavy side (Wagner…) - the mesmerizing prologue to the movie "Melancholia". No lyrics, just music and images, but some are...
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    NYT: Happiness Doesn’t Bring Good Health, Study Finds

    "Study finds that happiness doesn't cure illnesses". - But one thing is for sure: "Study finds that being cured from a lifelong illness brings happiness"! (the study of my dreams)
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    Psychogenic explanation of physical illness: time to examine the evidence

    There is certainly a lot of bath water to throw away around the Freudian baby, but there is one concept in there I would definitely keep: "Countertransference" It was meant to designate the sum of the psychoanalyst's inner reactions to the patient. Freud had various (and debatable...)...
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    TRIAL BY ERROR: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

    Not sure if my sources are reliable, but apparently Donald Trump made a comment on the Pace Trial controversy: "Yeah the Pace Trial, I'm all for it, I just love this trial, cause it's HUUUUGE, 600 patients, 8 million bucks, that's how you do things, I tell you, - oh and don't let those 8...
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    Mind/Brain and ME theorising

    In my view there is one conception in particular that ME theory, and even more so the experience of living with ME, totally wipes out: Any form of dualistic mind-body conception. I'm throwing in the issue of dualism because whenever people struggle to articulate concepts such as mind and...
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    Mind/Brain and ME theorising

    If the author of "Bright air, Brilliant fire: On the matter of the mind", the late Gerald Edelman, were here, he would have loved this discussion...
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    New Exercise Study Brings Both Illumination and Questions

    I really salute your emphasis on the issue of safety … This test in my view ought to be a means for research alone, and not a means to prove disability to insurers. Have a few hundred courageous ME/CFS sufferers undergo the test for the sake of science, and for that sake alone. It would be...
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    The Nightmare Scenario - IOM Case Definition Contract Terrifies ME/CFS Advocates

    When in doubt, take an extreme case… Good rhetorics! If we are proven wrong by having overreacted, well, so what… it will pass quickly, we won't regret it for the rest of our lives. But if we are proven wrong by having refrained from overreacting , we will pay from hereon in, it will not...
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    International experts speak out against the IOM contract to determine clinical diagnostic criteria

    Who is the # 1 advocate (or any other person concerned) who will be the first to know of the HHS' reaction and decision regarding the experts' letter, and capable of informing us here? Who is in the absolute front row among us?
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    The Subverting of the ME/CFS Mind

    Bob, If you have a secret on how to process emotions, please let me in on it! Mine, I feel I can only withstand them - or not … I can certainly process my thoughts, but how I feel is another story. I believe there was a tad of humor in Jefferz' quote of Buddha, and every now and then, this...
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    The Subverting of the ME/CFS Mind

    Dear Jody You had me right from the title! A subversion of the mind … Indeed. Its natural tendency to rely on the "Other" goes astray - the human is a social animal, said one philosopher, - provided he is not sick for a too long time, so it seems! The problem is not the illness, it...