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

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Search results

  1. T

    #MEAction funds 2 research assistants with VanElzakker

    there is also a fundraising effort for that study: https://because.massgeneral.org/campaign/support-myalgic-encephalomyelitis-chronic-fatigue-syndrome-exercise-challenge-study/c168141
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    A Metabolic Trap for ME/CFS?

    Maybe a stupid question but What is the next step to understand all this better?
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    HUGE NEWS! OMF grants $1.2M to Ramp Up Collaborative Research Center at Stanford University

    Stanford also got $457,536 from OMF from that Tuesday Giving campaign. Is this $1.2 million grant separate or $457,536 is part of it?
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    ME CONFERENCE SEPTEMBER 28, 2017, REYKJAVIK.

    Do we have any infornations from the conference? Were there any news which we dont know about?
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    ME/CFS Collaborative Research Centers & Data Management Center Announcements

    Well i dont know too much about science so i will not judge if the nih choice was good. What is the point that many patietns believe in Ron's research. So we should focus on this. There is a big potential to get private donations. I think the nano needle project is perfect one for crowdfunding...
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    NIH Telebriefing re ME/CFS - July 10 (open to international participation)

    I think stomach biopsy is not that difficult. I had it several times and it´s not necessary to take sedation. The examination is not agreable but nothing horrible. I think many patients make this examination because of GI difficulties - maybe it would be possible if a patient is doing a stomach...
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    Northern Ireland--Message to all GPs re: physiological nature of ME

    And can you describe more the actions you took?
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    Northern Ireland--Message to all GPs re: physiological nature of ME

    can you tell us more how were you able to achieve this? Maybe it can be a good concept also for other countries
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    12th Invest in ME International ME Conference 2017 registration is open

    @Jo Best do you know if there are any doctors or researchers from eastern Europe (I am especially interested in countries like Czech republic, Slovak republic, Poland, Hungary) who will attend the conference? Thanks
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    In Memory of Frantisek Rajtoral

    I dont want to make doubts about his diagnosis but I think it´s not sure that he had CFS. I think you cannot be a professional sportman with this diagnosis. I know it from my own experiences. I was a professional football player but I had to stop it after few weeks after I got CFS and I have to...
  11. T

    Open Medicine Foundation: $1M more towards a CURE!

    If I remember correctly prof. Davis said that they could spend $10 MILLION a year effectively but with $5 MILLION a year they can make a significant progress.
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    Dr Nath's intra-mural study at NIH is currently recruiting

    Do they plan to share preliminary results from different parts of the studies? I mean for example they said that the first phase can take 3-5 years. I know that the science works slowly but this is really frustraiting for the patients. Look for example at CDC CFS studies. They take already 5...
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    Dr Nath's intra-mural study at NIH is currently recruiting

    Long way to go. :-( Do you think they will release partial data earlier? It´s always interesting to have at least some partial informations during the waiting periode. Look for example at CDC CFS studies. I think they are doing their studies already for 5 years and we dont know anything about...
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    Dr Nath's intra-mural study at NIH is currently recruiting

    Do we know when we should expect results from these studies? Is there a timeframe?
  15. T

    Fecal metagenomic profiles in subgroups of patients with ME/CFS

    But if an agent disturbed the microbiome is it still there and does that agent still make problems? Or that agent already diappeared and the problem is the microbiome? Still so many questions.
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    Carol Head, SMCI President, On ME/CFS Research Funding

    I agree with dolphin. Private funding is important source for ME research and especially in our situation when there is almost no public funding. Even if we will get for example 100 mil. USD from NIH why not to get another 20 mil. from patients donations? Research is very expensive. We need all...
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    Ways & ideas to raise money for ME/CFS research, charities, etc.

    I think we can do a list of things how to collect more money for ME research. I will distribute it each month on ME facebook pages. So here are some of my ideas what the patients can do, I will think about more ideas - if you dont struggle financialy donate regulary to ME research - you can...
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    Carol Head, SMCI President, On ME/CFS Research Funding

    I dont agree here and for exmple the amount of money raised in UK which mentioned dolphin is very bad. If everyone from us would do a small effort we would do much better. I am a member of a small ME community (200 members) and I raised there a topic that if we dont struggle financialy we should...
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    Lactate may be key for cancer development

    An interesting study about lactate and his role in cancer development. i find it interesting because many ME patients have big lactate accumulation after exercise. Who knows - maybe there is a similar mechanisme. http://www.medicalnewstoday.com/articles/316438.php
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    Fasting-like diet reduces multiple sclerosis symptoms: applications for ME?

    I was also thinking about this (I have also gastro problems) but I am a bit affraid about hypoglycemic states. I tried ketogenic diet and I got 20 % more energy what was very good but after 6 months on ketogenic diet I started to feel hypoglycemic so I had to ad more sugar into my diet. Many ME...
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    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Prof Davis said that we should be careful with taking ATB if there is not the evidence of bacterial infection. But what do you think if you are diagnosed with SIBO - should we try to take ATB or not in this case? I know that probably there is not a simply answer for this but maybe it´s important...
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    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    Aren´t these mTOR discussions premature? If I understand correctly prof. Davis tested few patients (how many?) and he found a problem with mTOR enzyme in 2 patients. Is thins a significant number to be sure about?
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    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    from the transcription: "And it’s possible that if they’ve tried to “push through” that illness, too early, that’s what’s caused them to continue to have the disease. In other words – the “crashing” reinitiates the disease, over and over again. And that’s what keeps them in it, year after year"...
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    Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

    I think it´s definitely worth to try to get in touch with some philanthropists. YOur family has such a strong story, there are so many patients, many suffering and research project and great research team with a huge potential but waiting for money. I think it´s worth to try to write a letter...
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    'NIH RFA’s! Money talks – what will this mean for Columbia CII’s ME/CFS research!?'

    I also support both groups. I think it´s really pity that Lipkin group doesnt get more money - this group has huge potential. Hopefully they will attract NIH. We should think have to get more money for this group. There is already a big demand from many good research groups and the patients are...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    Do I understand good that Ron is proposing that the specialists in "biochemical genetics" should be the best to occupate with ME/CFS patients? Or is it still too early to say it and we still dont know enough about ME/CFS to say which specialist is the best? i am really intersted in this because...
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    An Update on ME/CFS Research with Ronald W. Davis, PhD

    When I was younger I didnt want to confess that many things are about money but they are. :-( Now I would marry an old billionaire to move ME research faster. Thanks for all your great job. We are following you also from middle of Europe with our small ME/CFS group - hoping that maybe some help...
  28. T

    OMF News February 2017

    I dont know if I remember correctly but I think prof. Davis did a statement about the long-term use of ATB - I think he had some concerns. Did someone remember if he did this statement and where I could find it? Thanks
  29. T

    OMF News February 2017

    So are they already sure about some genetic factors or do they want just to investigate it?
  30. T

    New Open Medicine Foundation Video: Ron Davis Reports on "Fast-Tracking" ME/CFS Research

    If prof. Davis is trying to invent some new cheap technologies which could serve to move ME research and also health science in generally we can try to create a project on Kickstarter. I think Kickstarter audience like new technologies projects.