• 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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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Was this mentioned by Alain Moreau? I think I missed this bit.
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    Can anyone recommend a disability lawyer in Minnesota?

    Thank you, @Tallen I'll check them out.
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    Can anyone recommend a disability lawyer in Minnesota?

    Hello, I am in need of representation for my Supplemental Security Income (SSI) case in the state of Minnesota. Do you have one you could recommend?
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    Could Copaxone Help Us?

    I imagine a doctor would have to have a good rationale for using Copaxone off label like this. And saying that there are a couple people on the internet who say it helped them probably isn't enough. But I dont really know.
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    My poll about family members with ME. I have a small sample showing a pattern. I need more data to confirm.

    My mother has ME. I have ME. I have seven siblings and two of them have ME as well.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    I dont know what kind of effect a kynurenine pathway trap might have on urine metabolites, but my quinolinic acid and kynurenic acid are as follows. Kynurenic is center of reference range, and quinolinic is low normal. Pulled from an old Organic Acids Test
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    OMF: Meet the ME/CFS Collaborative Research Center at Harvard Team

    I hope this translates into lots and lots of new grant proposals to the NIH this coming year.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    In the Q&A at the end of the symposium, Robert Phair mentioned that serotonin could be high or low, depending on cell type. So.. maybe? Their experiments were performed on white blood cells.
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    Dr. Ron Davis Presents ME/CFS Research at the 2018 IIMEC Conference

    Does anyone have a time stamp for this? I totally missed it. Seems really consequential.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Why do you suppose most severe patients are already high in IFN-y? I dont know much about such things. It just seems counterintuitive since IFN-y upregulateS IDO.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    @Rachel Riggs Do you, or anyone else for that matter, happen to know how many drugs have been tested in the Nanoneedle to date?
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Regarding the recent Nanoneedle results from the drug Copaxone. This was posted to the Facebook group "MECFS for the Slightly Irreverent" by Rachel Riggs, who is a patient, and the study coordinator / community liaison for Dr Robert Naviaux's lab. "** Something really important happened this...
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Interesting about the St. John's Wort. I took a squirt of the tincture a few months back, and it slammed me for three days. I felt like my M.E had suddenly become much worse. And for the first day or so I was baffled. Then I remembered I had taken the SJW. The interesting variable here is that I...
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Both the anti-purinergic drug Suramin, and more recently, the Multiple Sclerosis drug Copaxone, make the cells healthier when tested in the nanoneedle.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Are there any hypotheses being publicly explored that might explain what it is about the triggers of M.E that drives up intracellular tryptophan in the first place? (If that is indeed what is driving up tryptophan) Does Robert Naviaux's Cell Danger Response make a mention of tryptophan?
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Ron Davis said: "the important thing to point out is that to do all these things, the rate-limiting step on all of this stuff, is having enough funds to hire enough people to do it". So, for those who want to help, and can help, please consider donating to www.omf.ngo Every little bit helps.
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    Question about the Nanoneedle Biosensor: Can someone help me understand, at least in basic terms, why electrical impedance of a cell is a useful metric?
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    Cortene Peptide for MECFS? "Curative"?!

    @Cort , would it be correct to say that another one of the big differences between SSRI's and CT38 is that SSRI's seek to ameliorate depression by moderately increasing serotonin via blocking its reuptake, whereas CT 38 - being an CRF2 agonist - seeks to spike serotinin much higher in an effort...
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    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    I'm just now learning that a few people have experimented with Suramin on their own. Could someone direct me to where this was mentioned?
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    Cortene Peptide for MECFS? "Curative"?!

    Cortene ll: A New Drug & A New Hypothesis for ME/CFS https://www.healthrising.org/blog/2018/02/17/cortene-chronic-fatigue-syndrome-hypothesis/
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    Cortene Peptide for MECFS? "Curative"?!

    Cort suggested in the comments under the blog post that it could take several years to get through phase ll and phase lll trials. However, if the early studies are successful it may be a candidate for designation as a "breakthrough therapy", as we recently saw with MDMA for PTSD, which would...
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    New Cause Of Autoimmunity Discovered - Age Associated B-Cells

    https://m.medicalxpress.com/news/2017-05-trigger-autoimmune-disease.html Trigger for autoimmune disease identified May 11, 2017 Researchers Kira Rubtsova, Philippa Marrack and Anatoly Rubtsov have shown that the transcription factor T-bet inside B cells drives the appearance of...
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    Immune network analysis of cerebrospinal fluid in ME/CFS with atypical & classical presentations

    From the paper: "All cases (both classical and atypical) met either the 1994 CDC criteria10 and/or the 2003 Canadian consensus criteria." How do we know which subjects met which criteria? The "and /or" is very confusing.
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    Rich Carson's advert/hype of a new drug treatment for ME.

    Has anybody heard anything new?
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    Poll: Does your ME/CFS include MCAS?

    How do you differentiate between MCAS and MCS? I see the two terms as synonymous. If MCS isn't mast cell mediated i'm not sure what else would explain it.
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    Poll: Does your ME/CFS include MCAS?

    I suffer from terrible mast cell issues along with my ME/CFS. Smokes, Molds, Fragrances, and chemicals from new products like furniture, clothing, and general merchandise all set me off terribly. I was under the impression that this was true for the majority of ME/CFS sufferers, but another...
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    Which theoretical cause of CFS/ME do you believe to be true?

    My theory: The first mover is some kind of trauma (Emotional, physical, infectious, toxic, nutrient deprivation) --> Causing epigenetic changes --> Causing immune cells to go wonky --> Causing the production of autoantibodies --> Causing disruptions in energy metabolism and the engagement of...
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    Act now - thank US Senator Ed Markey who has offered to be ME's advocate

    I called and expressed my gratitude for senator Markey to the woman who answered. I had a short hold wait time and then when she answered she was polite but somewhat hurried. I figured that might be because of all of you who were also calling :)
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    Hypokalemia (Low Potassium), Anyone?

    All of my symptoms listed are more or less present upon waking up. And no night sweats.
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    Hypokalemia (Low Potassium), Anyone?

    I have found that low potassium plays a part in me awaking prematurally, suddenly, with an accelerated heart rate, a feeling of inflammation in my head, a need to urinate a large volume, and a propensity for anger. Now when I take 300mg Potassium Gluconate before bed the incidents of this kind...