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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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Search results

  1. A

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

    This is from Maureen Hanson talk at IIMEC
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    OMF has collected already almost $ 20 mill .By far more than any other ME Research group to make fair comparisons.
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    It is worrying that a new Researcher like Prusty feels that Labs that right now concentrate ME Research may not facilitate them entering the field.
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    Third Annual Community Symposium on the Molecular Basis of ME/CFS Sponsored by OMF - DISCUSSION

    I honestly had the opposite perception :wide-eyed:
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    Big Data App to Explore Genomes for Clinical Relevance, Rare Variants, Drug Response, etc (Free)

    Thank you for sharing your app @kday Is there any web you can get the HLA variants with your VCF file ?
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    Spanish Petition : Remove ME guidelines

    REMOVE GUIDELINES - CHANGE.org Recently our Social Security has published a Medical Guideline which encompasses: Fibromyalgia, Myalgic Encephalomyelitis, Chemical Multiple Sensitivity, Electromagnetic Sensitivity and Somatomorphic disorders...
    • Aroa
    • Thread
    • cbt get spanish guidelines
    • Replies: 1
    • Forum: Petitions
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    A Metabolic Trap for ME/CFS?

    This paper is interesting because it may be linked to the second Metabolic Trap hypothesis studied by Dr. Phair : “Tyrosine” since phenylanine can be converted into it, and because of the use of a new technology. These are Karl Morten´s words provided by MEA in a Research summary : “It is...
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    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    How would the fact that there are more women with ME correlate with this metabolic trap hypothesis ? Any ideas ?
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    Brain on Fire: Widespread Neuroinflammation Found in ME/CFS by Jarred Younger

    In his latest research update video, Mark Davis said (5:15) there is a possibility T cells are targetting a self antigen , may be a neurological one
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    A Metabolic Trap for ME/CFS?

    It would be great to have Robert Phair at the next Stanford Symposium
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    OMF-Dr Davis research update (video!)

    Although Naviaux´s panel may be expensive , it is much more expensive to pay lot of money to private doctors for medical reports, lawyers and finally being fired because you have no way to prove you are really sick
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    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    Last Year I was very excited when I heard Dr. Davis during the Q&A update in March saying : "" It’s possible that we can find something that will work, at high concentration – but not be the target that the drug was originally developed for. Now, at these high concentrations there will be side...
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    Seeing Dr John Chia on Friday, What Questions Should I Ask?

    Thanks for sharing @used_to_race Did he tell you anything about his collaboration with Maureen Hanson ?
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    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    I think if they were really confident Suramine may work, they would have already conducted a clinical trial. The supply issue seems to me an excuse, for just a pilot study as the one made for Autism by Dr. Naviaux.
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    Ponderings and speculations about purinergic signaling, in pursuit of a unified ME/CFS theory

    Also tagging @dreamydays , I think he was trying it as well
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    Rituximab Phase III - Negative result

    I believe Dr. Chia will play an important role in Maureen Hanson`s CCR. This will probably mean they will look into it. You can find it at the end of this link : http://news.cornell.edu/stories/2017/09/94m-nih-grant-funds-chronic-fatigue-syndrome-center
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    I feel like a failure

    Eric, You are not a failure !!! You are a Hero. Our health authorities are a failure, they are responsible for this horrible situation. They should promote good science and fund it accordingly with the disease burden. They should provide the right education to the medical class I know...
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    Potential Suramin Alternatives - Sytrinol and Kudzu (Anti Purinergic Therapy)

    @nandixon thank you so much for this fantastic information !!!! what dosage are you taking ?
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    How can we help accelerate Dr Naviaux's ME/CFS Suramin trial?

    In this article they say Naviaux found Suramin half life was just two weeks in his human trial : https://epiphanyasd.blogspot.com.es/2017/05/suramin-purinome-and-autism.html
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    Low-dose naltrexone (LDN) - how's it working for you?

    Thanks so much for sharing your experiences !!!! Dr. Jarred Younger suggested that higher erythrocyte sedimentation rate (ESR) was related with higher response to LDN. Could anyone comment on this ?
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    Cellular bioenergetics is impaired in patients with chronic fatigue syndrome

    Maureen Hanson talked about her Project "cellular metabolism of immune cells in ME/CFS" at the Discovery Fórum : Data from T cells (immune regulatory cells) isolated from 20 ME/CFS patients and 20 controls indicate that T cells in the former group are using significantly less of their...
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    Calcium Lets T Cells Use Sugar to Multiply & Fight Infection

    Dr Derya Unutmaz is also tweeting this . Would this mean that T-cell clonal expansion is not due to an autoimmune process ?
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    Interview with Walter Koroshetz (NIH/NINDS Director) & Zaher Nahle (Solve ME/CFS Initiative)

    Thank you Dr. Nahle and Solve Me for your positive and “Smart” advocacy work and for promoting other researchers to come into the Me field. Thank you Dr. Koroschetz. I know you are responsible for many diseases, but please we are desperate for treatments. We need your help.
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    My success story. Tons of biotin.

    It would be nice if we could have soon a metabolomics Test either from Stanford or any other company like Metabolon ( I think they are working with Stanford ). I do not understand why there isn´t any comercial Test available so far if there is a potential market out there. It may help some of...
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    Has anyone tried Dr Ty Vincent's Coxsackie B4 LDI antigen for CFS/ME?

    Hi @Jesse2233 , Besides Sergio, there is one more Lyme patient I am aware of, Candela, who was quite successful with this therapy. They both came back from this congress : http://www.progressivemedicaleducation.com/events/EventDetails.aspx?id=961954 We have a subforum for LDI, where people...
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    Simon McGrath blogs: Mark Davis finds the strongest evidence yet for ME/CFS immune activation..

    So would there be more than one antigen or is it possible that different TCR may share the same antigen in our case ?
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    Could this be a possibility? (Auto immunity and cortisol)

    How difficult is it to find the target with the current technology ? Given Mark Davis´ findings , is it still relevant the CDR approach to find a treatment ?
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    Join us for a Community Symposium on the Molecular Basis of ME/CFS! Incredible opportunity!

    I didn't :(
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    Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

    You can see the Agenda for Saturday here : https://www.omf.ngo/2017/07/02/agenda/ The title of the talks for this day are not always the same. Also I wonder if some of the things being discussed now are not yet published, how much will they be able to share tomorrow ?
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    Just had first appt with Dr. Kaufman

    Thank you all for sharing your experiences. Could any of you who went through the Cell Trend Test tell us which specific antibodies were you tested for ? There are so many on their web