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

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  1. D

    Dormant vs activated immune system

    Lissyleigh, below is a link to a paper, although somewhat dated, on the role of the sympathetic nervous system and the immune system; not sure it will be of much help. I don't know enough to judge the quality of the paper; it does reference many older papers...
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    Dormant vs activated immune system

    I don't really know but I suspect a major player with some symptoms is loss of proper neurological control of the immune system which I think fits with the "E" part of ME. If this is the case, what is causing the nervous system to malfunction. Could this cause the metabolic dysfunction...
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    Abnormal blood results!!

    Not everyday you get to say congratulations for having abnormal blood test results:) I hope this puts you on the beginning of a path to feeling better!
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    If there were no barriers, financial or otherwise, what treatments would you try

    My hope is the day comes in the not distant future when Whitney is recovering; there is effective treatment for all CFS/ME sufferers and Prof Davis can pass the torch and enjoy at a minimum semi-retirement with two healthy children.
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    Ben and Claire's adventure to Davis-Dafoe land!

    Here I am 3 time zones away feeling like the USA will be a bit emptier without them:(
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    Ben and Claire's adventure to Davis-Dafoe land!

    The safety aspect is nice but a number of years ago after driving a similar sized rental around San Fran, I decided the most stressful job in the world is bus driver in SF.:nervous: I think driving in SF takes equal concentration to flying with the Blue Angels (happened to be fleet week at the...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I believe, generally speaking, that it is severely underestimated on how many levels autonomic neural dysfunction can wreck your health including your immune system and do so in a way that is not easily detectable.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I think this very interesting. Based on personal experience and extraordinarily limited knowledge, I have been suspicious that there is some type of dysfunction in noradrenergic modulation of the immune system playing a role in CFS/ME. This is a quote from a conclusion of an OLD study: "In...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    When Prof Davis mentioned hypothesis testing, I couldn't help but think, sure we have a “hypothesis,” ME/CFS is a result of physiological/biological dysfunction and not psychogenic. OK NIH lets fund a study.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Thanks again for sharing Ben:thumbsup: I think the highlight of the new video is Prof Davis saying, "I understand this disease pretty well now" Just wow!!!
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    Can Overmethylation induce Parkison ?

    Thanks for the info Mary; it did feel a bit like a hangover after taking the B12. Mucking with electrolytes (K) seems to make sense given the way it made me feel. I just happened to have some potassium in the house; took some and feeling a bit better today; maybe a coincidence but maybe not.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    I think a big part of the value of the test is providing a method to isolate what in the blood serum is causing the problem. Just isolating the problem to the serum seems like a big deal to me. Interesting and exciting for sure.
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Wow, exciting research! Being able to narrow down where the problem resides and easily test the effectiveness of drugs in resolving the problem is huge!! And yes, I will be donating:thumbsup:
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    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    Did a quick Google search and found the following link with info on the funding and development of a test: https://www.griffith.edu.au/health/national-centre-neuroimmunology-emerging-diseases Scroll down to the December 1 article.
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    Can Overmethylation induce Parkison ?

    Not sure this helps...I suffer from chronic malaise almost certainly due to a known neural deficit. I recently tried high dose B12 which would amp me up a bit when I first took it. However, the next day I felt much worse. Could be coincidence but it happened twice taking the B12 and I quit...
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    Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders?

    I tend to get angry along with many others when some sort of psychological causality and ME/CFS get mentioned together. The articles points out some problems with that line of thinking which is good. I firmly convinced any psychological issue associated with ME/CFS is a side affect and has...
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    Medically Unexplained Symptoms: A Treacherous Foundation for Somatoform Disorders?

    Looks to me the quoted material raises some good points. Research and symptoms I have come across suggest the body-mind neural connection plays a significant role in emotions which I find fascinating. That is there is a very direct connection from the body generating what is in the mind (or at...
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    Waking up with fight or flight response -- excess sulfur?

    I have no idea about the role of sulfur. Regarding your state when you awaken, there is more than enough data in my mind to conclusively prove a link to sympathetic neural pathways to the heart and your emotional state; certainly what you are experiencing seems to fit this. The point here...
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    Ben and Claire's adventure to Davis-Dafoe land!

    Thanks for sharing and great to hear how much you all are enjoying your time together! Kudos to you for turning a trip to the drugstore into as positive an experience as possible:)
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    Ben and Claire's adventure to Davis-Dafoe land!

    Wow Ben, what an epic trip on all sorts of levels. As others have said you are a wonderful writer and your ability to convey not only details but the spirit of your journey is fabulous. Thanks for sharing your trip and your precious energy with those at home going along vicariously.
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    Which theoretical cause of CFS/ME do you believe to be true?

    I suffer from chronic malaise which I am 99% sure is due to a relatively small neural deficit in my ANS; I could certainly see myself completely dysfunctional had more of my ANS been affected. This makes me believe the ANS is at least a significant player in some CFS/ME symptoms. Of course the...
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    Guys Let's Focus on the latest science here

    The information below is from an older paper circa 2000 dealing with sympathetic nervous system noradrenergic modulation of the immune system for what it is worth: “By inhibiting type 1 and potentiating type 2 cytokine production and by acting directly on effector cells, CAs suppress cellular...
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    Blood Work is Normal???

    I could be totally off base with this but since I have been looking into neural modulation of the immune system I keep seeing things that make me go hmm. Below is a reference to research as to what is observed when there is a sympathetic nerve ganglion block: Yokoyama M, Nakatsuk H, Itano Y...
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    Blood Work is Normal???

    Hi Lauren, I have normal blood work as well. I am new to this site. What brought me here is I suffer from what I describe as life altering chronic malaise with associated fatigue exacerbated by exertion. However, in my case I believe my condition stems from nerve damage resulting in loss of...
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    Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

    Simply an outstanding Ted Talk by Jen and I am very much looking forward to seeing Unrest. I showed her Ted Talk to my wife and it really opened her eyes as to what people with ME/CFS go through. I think it is impossible for the general public to understand what this disease does to people by...