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

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Search results

  1. B

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    'Effort preference based'. I guess we had kind of an unrepresentative group of patients in this study. I am not even speaking about the bogus assumptions that have been made in terms of 'effort'. How severely are you affected physically by this disease, do you share that information? I...
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    Filgotinib (JAK1 inhibitor) future of CFS/ME treatment?

    Did anyone try a JAK inhibitor yet?
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    Severe fatigue due to low phosphorous

    Hey, did you try the phosphate supplement? My blood phosphate is low also.
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    Very noticeable improvements in brain fog using Dr Greg Russell-Jones's transdermal B12 oils (which provide a similar dose to B12 injections)

    Daily "high dose of selenium," depending on what you understand as to be "high," will result in toxicity.
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    Evidence the cause of ME/CFS is in the kidneys: my experiments targeting my kidneys with bacterial biofilm-destroying ultrasound

    "Evidence"
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    NIH intramural research program update

    Wow! Would love to read that.
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    ME/CFS is a mitochondrial disease

    Getting closer to finding out: I am still breathing, but not sure for how long at this point, hope to be around to see this come to fruition. https://www.healthrising.org/blog/2022/04/23/mitochondrial-chronic-fatigue-syndrome/
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    Petechia - tiny red spots - mainly on arms (burst blood vesels)

    Still getting more? For me they constantly,but slowly so increase in numbers. How severe are you?
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    Purported cure for Latent Virus sustained ME/CFS by Joshua Leisk and Aline Nocon

    Who is Dr. Rey, and what are they doimg? Ty!
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    Dr Markov CBIS Theory of ME/CFS - General Discussion

    Has this actually worked for anyone in here?
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    Empagliflozin

    Has anyone without T2D tried Empagliflozin? https://diabetesjournals.org/care/article/45/2/398/139008/Empagliflozin-Improves-Insulin-Sensitivity-of-the Thank you!
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    lasting worsening after immunoglobulines (gammanorm)

    What was your dose? Thank you!
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    Curcumin, caryophyllene, and the cannabinoid connection

    How severe were you pre miracle drug, how severe are you know?
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    Review of the Midbrain Ascending Arousal Network Nuclei and Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M... (Baraniuk, 2022)

    That is definitely far less speculative than CCI, why do I say that? Because I know that my Urea cycle is overburdened, I know I have raised MSUD metabolites that should not be there, and I have too much of deamination going on. It can be seen in my blood, reliably tested over and over again...
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    Review of the Midbrain Ascending Arousal Network Nuclei and Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M... (Baraniuk, 2022)

    I would like to second that. I would hope that inquiry that stands on such "weak evidence" is not funded by the OMF. Still a fan of @HTester and grateful for his help and effort for finding answers obviously. Does this "shift" also indicate that IDO metabolic trap is not being worked at anymore?
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    Has anyone else out there experienced this? Rigid muscles - sort of body paralysis.

    I have the exact same things going on and came to the same conclusions that you came to. I have very severe me, I went from severe to very severe with NAC, but now NAC helps me.
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    Has anyone with ME (irrespective of COVID status) been on PAXLOVID?

    Thank you.
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    DOMS (Delayed Onset Muscle Soreness) is Neural Microdamage Rather Than Muscle Damage

    = likely a mechanism at play or disarray in me/cfs it seems to me
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    Endothelial Dysfunction in ME

    Thank you @Pyrrhus, as always! Just wanted to point out that it's not certain that the Endothel is not structurally damaged (in this subset of) ME patients. We can derive from these findings that yes, there is smthg or the absence of smthg in the blood, but this does not automatically mean...
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    A systematic review of mitochondrial abnormalities in ME/CFS/SEID (Holden et al., 2020)

    No, that is not what the research is saying. The research says "we don't know" at best.
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    A systematic review of mitochondrial abnormalities in ME/CFS/SEID (Holden et al., 2020)

    It's doubtful that mitochondrial dysfunction has no role in this disease(s). The notion that a disease is not a mitochondrial disease because it's not a mitochondrial genetic disease is semantics at best. Many auto inflammatory and so-called autoimmune diseases have a common underbelly which...
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    Exercise Challenge Reveals a “Remarkable Discordance” in the Brains of People with ME/CFS

    The DMN is likely a mechanism that the brain is in to conserve energy. Meditation can soften "that grip" somewhat, but why would it make you better longterm?
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    Remembering Dr. Ron Tomkins of the OMF

    Ron was a good man.
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    Reoccurring chickenpox and shingles.

    Any changes in your mecfs re Valtrex observable? Ty!
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    Exercise Intolerance in Hypermobility: Systemic Vascular Distensibility relates to exercise capacity in connective tissue disease (Singh et al 2021)

    I am saying for a long, long, long time that only a slight bodywide structural blood vasculature dysfunction/abnormality could cause symptoms like in mecfs, just by itself. Nobody researching this disease ever cared.
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    The Enterovirus Theory of Disease Etiology in ME/CFS: A Critical Review (O'Neal and Hanson, 2021)

    What is your take, if you have one, on the mitochondrial dysfunction present in me/cfs cd8 cells for example? Seems unlikely to be due to "inflammation"?
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    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    I am not sure motor neuron neuropathy is a non-issue in myself, and therfore maybe others with me/cfs? But I definitely agree it will be to a lesser degree than in pps.
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    Exercise Intolerance: Insights from Invasive Cardiopulmonary Exercise Testing of Patients with ME/CFS (Joseph et al., 2021)

    @Pyrrhus I am sure you will find a good thread where this paper fits best. I think, what we are dealing with here is very similar to what happens in post-polio syndrome. https://pubmed.ncbi.nlm.nih.gov/2711135/
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    Dr. John Chia talks about chronic enterovirus infection in ME/CFS - Interview by Amy Proal

    Has anyone tried Dihydroquercetin mentioned by Dr. Chia? @Pyrrhus or @Hip or @mitoMAN maybe? Different results compared to Quercetin expected?
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    Dr Patterson on Long Haul Covid vs ME/CFS

    There are multiple gofundme campaigns that collected 100k+ for semi bogus spine procedures, so I guess that could be a way to collect the money, another one might be to ask hiv patients that take the medication.