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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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    Naviaux to Speak on CDC Conference Call May 25

    I hope you're right – it just seems a little odd to me, as Naviaux has been talking about Suramin for quite a while (it was bandied about a bit, for instance, when his paper on ME was published last year). If Ron also thinks its probably Suramin, why didn't the OMF just fund a trial once they...
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    Naviaux to Speak on CDC Conference Call May 25

    Yes, I understand they have the same basic theory of the disease. But Ron has spoken of (I believe, has begun) testing a vast array of drugs in the hope of isolating one that works, whereas Naviaux, to judge by the slides, seems to believe that we probably already have the answer in Suramin -...
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    Naviaux to Speak on CDC Conference Call May 25

    Hi Janet, feel free to ignore this if you can't answer, but I'm sure I'm not alone in wondering whether Ron has the same interest in Suramin as a prospective treatment for CFS as Bob Naviaux?
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    Mark Hyman MD article: "Getting to the Root Cause of MS and Chronic Fatigue Syndrome"

    One day fairly soon such figures as Dr. Hyman will no longer be able to masquerade as 'Chronic Fatigue Syndrome' experts, and their efforts will be exposed to the scorn and ridicule that is only proper. Perhaps even CFS, that loathsome euphemism, will be gone. Either way, change is coming.
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    Looking for info on stimulants in CFS

    I am not conflating anything, the trials of ADs are mixed, simply saying they don't work, particularly when many patients use them (for sleep primarily), seems to me not very helpful. We don't have much evidence about whether modafinil is helpful for PWME either, so again, it seems odd to just...
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    Looking for info on stimulants in CFS

    There's only one recent trial evaluating their effectiveness and the results were ambiguous - improvements vs placebo but not to a statistically significant amount (much like antivirals, for instance). So at this point we can't really say what their effectiveness is, apart from anecdotal...
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    Looking for info on stimulants in CFS

    Yes, you could certainly just try them once weekly at first. I find that they mainly help with mental energy, but they can help a lot (in my case, I go from being able to study for 20 minutes a day, to 2-3 hours). I think about them as allowing me to 'steal' energy from the end of the day to be...
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    Looking for info on stimulants in CFS

    If you have problems with mental stamina/energy, they can be very useful, if used in smaller doses and with a strategy to avoid PEM, as I and others on the forum have found. They obviously don't treat the root cause of ME, but both classes of drugs provide increased amounts of neurotransmitters...
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    Looking for info on stimulants in CFS

    I am prescribed provigil (modafinil) and dexamphetamine, which I cycle to avoid tolerance (with plenty of off days). Both provide large, temporary increases in mental energy and have been enormously useful for me (I can't study at all without them). When I was first prescribed them I crashed all...
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    Delayed post-exertional malaise (PEM): can it be caused by mental over-exertion alone?

    Yes, I mainly get PEM from mental overexertion. When I was more severe, I could trigger PEM from as little as 4-5 minutes of reading or more than 15 minutes conversation in a row (and there are many who are worse than that from what I hear). It was always remarkable to me at the time that tiny...
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    Immune network analysis of cerebrospinal fluid in ME/CFS with atypical & classical presentations

    Thanks, I think/hope you're right. The confusion seems to stem from the fact that 'classical' is fairly clearly defined as viral-onset, so then it's tempting to assume everyone else is atypical, but that could easily not be the case
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    Immune network analysis of cerebrospinal fluid in ME/CFS with atypical & classical presentations

    Also confused/scientifically illiterate/worried. Are they saying that every patient that did not exhibit a classical viral onset (e.g. all gradual onset patients, like myself) are 'atypical' and thus predisposed to later comorbidities? The language in the Simmaron piece is vague.
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    Chris Armstrong's presentation for Solve ME/CFS October 20 2016 (metabolomics)

    This is fascinating, Chris, thank you so much for sharing your thoughts. In terms of bacteremia, how would this model fit with episodes of mental PEM (i.e. PEM caused by mental exertion alone)? When I was at my worst, I was able to trigger PEM just by reading for more than 4-5 minutes in the...
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    Xyrem/sodium oxybate experiences? Advice needed

    My sleep doctor has recently suggested that I might be able to trial the deep sleep enhancer Xyrem. Unfortunately, in order to qualify to take the drug I have to complete a punishing (and expensive) night + daytime sleep study, which I'm very worried will result in a serious crash. I've explored...
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    Much worse after short course of Equilibrant

    Thanks for the replies guys. I don't think I can face another round of Eq, so I guess I will just have to keep resting and keep my fingers crossed that this is temporary (I've tried all of the supplements you suggest Hip, with some benefit from a few of them). Am (a little perversely) glad that...
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    Much worse after short course of Equilibrant

    Has anyone had an experience like mine after trying Equilibrant? At the beginning of April I started on Eq after two years of moderate symptoms. I began with one pill, and didn't notice any particular side effects. After a week I increased to two per day and started to notice low-grade fevers...