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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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  1. F

    #OMFScienceWednesdays-Robert Phair, PhD + ‘Metabolic Trap’

    @Janet Dafoe not sure why I'm bothering to post this (since Ron & co will already have considered it) but if you want to measure intracellular tryptophan, then possibly aptamer based proteomics is an option*. Since Robert/Ron have trapped yeast cells then you could use those to investigate...
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    IDO Metabolic Trap Hypothesis Published Today

    Thanks for this. There's a literature review here which is interesting: https://www.spandidos-publications.com/10.3892/mmr.2018.8537 Coupled with Bupesh Prusty's work on mitochondrial fragmentation i.e. as an immune response; this (accumulation of intracellular tryptophan) seems to support...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Interesting that "With the corona pandemic funds will not be available in the near future for ME/CFS research from NIH". That was my reaction i.e. regarding the European Union Commission but then I was in contact with someone who said that this may not be the case --- the coronavirus work needs...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Thanks Janet please pass on our regards and thanks to Ron, and all of those involved. Yes, public funding (NIH etc.) which reflects the disease burden, i.e. number of people affected and severity, has never been delivered for ME.
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Can't think of anyone in the world more motivated than Ron Davis to understand and find treatments for ME. OK I'd like more updates, I've stopped checking the website for updates --- pick up the email notifications. However, media stuff takes people away from science (Robert Phair - misquoted)...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    There's another way to generate hypothesis when you don't understand a disease--- One of the things which is bugging me about the search for answers in ME is that there hasn't been a demand for a Genome-wide association studies (GWAS). There's an application by Chris Ponting in the UK...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Spent 10 seconds looking at the headlines when I Googled "Judy Mikovits WPI". I recall people saying that ME was a controversial research area---
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Yes I'd like to know how Chris Armstrong & Robert Phair are progressing with their work on collagen breakdown/synthesis. Fluge and Mella (part of the OMF group) have just published a paper "Human Leukocyte Antigen alleles associated with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Word on the street is that the NIH funding for ME research centres was meagre; the first meeting of the 3(?) research centres had a lot of discussions regarding the difficulties they faced due to limited funding --- article by Cort Johnson. NIH has been better than European Union (EU), still...
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    Nanoneedle update: finding what's in the blood

    Yea the guy who was leading on the nano-needle got a (permanent?) job in another university (Irvine?) Nano-needle gets a mention in this talk [$30,000? to upgrade it to a multi-channel device]. https://www.omf.ngo/2019/12/09/dr-ron-davis-hosts-a-bedside-chat-with-omf-correspondent-ben-h/ An...
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    Nanoneedle update: finding what's in the blood

    Considering the difficulty in diagnosing diseases like Lyme, I wonder if the nano-needle could be a rapid screening device. Even if it does not diagnose Lyme, ME or whatever specifically having a device which could narrow down the possible diseases producing a set of symptoms seems like a...
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    IDO Metabolic Trap Hypothesis Published Today

    There are some reports on the key points from Ron's talk here https://www.s4me.info/threads/livestream-ron-davis-to-speak-at-columbia-university.12407/page-2#post-219522 including this link https://paolomaccallini.com/2019/11/21/ronald-davis-at-columbia-university/ I have to say I found it...
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    In this post I show you how CFS/ME could be an acquired immunodeficiency. Please share this informat

    Hi @Manuel EU funding for research - understanding researchers perspective/needs I posted here looking for help - https://www.s4me.info/threads/eu-petition-opportunity-to-lobby-for-funding-for-me-research.10363/page-6#post-217951 Here's my post: @Jonathan Edwards you're probably aware of the...
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    IDO Metabolic Trap Hypothesis Published Today

    Perhaps - hopefully we will find out soon either way.
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    IDO Metabolic Trap Hypothesis Published Today

    @bctjr1993 I corresponded with someone recently, who is much more knowledgeable regarding science i.e. than I am, and they felt that it's not clear that the metabolic trap is the correct hypothesis - from memory they pointed out that the incidence of the mutation(s) (in IDO2) is now considered...
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    In this post I show you how CFS/ME could be an acquired immunodeficiency. Please share this informat

    Hi I'm involved in an EU petition re funding for biomedical research. There's a thread on Science 4 ME. I use the same ID on Science 4 ME so you can contact me via that website if you wish to. ME Action are sponsoring the petition. So you can contact me via that webpage as well. I think the EU...
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    In this post I show you how CFS/ME could be an acquired immunodeficiency. Please share this informat

    Hi Manuel, are you Manuel Ruiz Pablos - picture here https://solvecfs.org/bruno-paiva/? Interesting project, well done.
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    Intracranial pressure, anyone?

    Interesting i.e. you can examine the eye's to establish whether there is a problem with intercranial pressure.
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    Intracranial pressure, anyone?

    Very interesting area; I think Jen Brea may have had this/has this. I think you're correct about the difficulty in diagnosing intracranial pressure. Also, not clear on treatments, possibly a device (shunt) plus pressure regulation valve.
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    IDO Metabolic Trap Hypothesis Published Today

    Yea I meant increase the production of Kynurinine via IDO1. I didn't mean increase production of IDO1; I meant get the IDO1 enzyme to be effective at higher tryptophan concentrations - hadn't realised that up-regulated is only used to describe an increasing in IDO1 concentration. As you poit out...
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    IDO Metabolic Trap Hypothesis Published Today

    Just noticed this publication "Potent Activation of Indoleamine 2,3-Dioxygenase by Polysulfides" https://www.ncbi.nlm.nih.gov/pubmed/31436417 Looked at it for a few seconds - possibly a way to up-regulate IDO1 i.e. the enzyme which is not broken but is substrate inhibited @Janet Dafoe (Rose49)...
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Thanks @raghav I've re-posted here https://www.s4me.info/threads/sweden-me-conferences-oct-16th-17th.11660/#post-207022
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    IDO Metabolic Trap Hypothesis Published Today

    Thanks @Snow Leopard don't suppose anyone's identified a drug which increases the activity of IDO1 i.e. so that it is not substrate inhibited (or fixed IDO2)!
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    IDO Metabolic Trap Hypothesis Published Today

    I occasionally check out this site https://followmeindenmark.blogspot.com/2019/06/me-hypotese-metabolic-trap-den.html There's a post on the metabolic trap here's an extract: "The question is whether the serotonin system in the brain / brain stem also may be affected in CFS patients? The...
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    Jarred is due to present at a Conference on 16th and 17th so possibly these may be the presentation he was due to give at the Community Symposium: https://www.s4me.info/threads/sweden-me-conferences-oct-16th-17th.11660/#post-207022 Don't know if they will be available later or just live.
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    Anyone experiences inversion of circadian rythm?

    Yes i.e. Ron Davis tested suramin in the nano-needle and it returned the signal to normal. Problem is Bayer, company which manufacturers suramin for WHO, doesn't want to put it through the (expensive) approval process i.e. for autism - possibly the trial you are referring to is an autism trial...
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    IDO Metabolic Trap Hypothesis Published Today

    @HTester; assuming that the metabolic trap theory is correct then people with ME will have a mutation either on: IDO2 gene - tryptophan metabolic trap (lets say 75% of the population have this mutation); or tyrosine Hydroxylase (?) gene - tyrosine metabolic trap (% population with this mutation...
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    Anyone experiences inversion of circadian rythm?

    Ron Davis, in his talks (available on-line) has highlighted that sleeping sickness is so named because sufferers are awake at night and asleep during the day. Also, suramin (sleeping sickness drug) reverses the ME signal on the nano-needle - potential treatment?
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    IDO Metabolic Trap Hypothesis Published Today

    Check out Dr Phairs talks; he mentions a cancer drug which suppressed IDO1/2 (can't remember which) i.e. in order to promote immune activation - kynurenine suppresses autoimmunity. Phair was struck by the fact that these patients, who were terminally ill, refused the drug owing to the severe...