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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. neweimear

    Special Message for you from Ron Davis (video)

    @Ben H a realist as in a treatment in our lifetime? As in next few years...is that realistic or am I Alice in Wonderland? I know we don't know a timeline but what does being a realist mean to you. I'm obviously not a realist, just going off the rails a bit. I'm not being sarcastic, I'm not sure...
  2. neweimear

    Special Message for you from Ron Davis (video)

    Don't worry I've tweeted NIH, written to Collins twice, my daughter has written also. I'm angry in general and it's awful to be turning bitter. It's not who I am. But being bedridden and going down hill with kids is really hard. I know it's hard on everyone. Ive literally broken my ass trying to...
  3. neweimear

    Special Message for you from Ron Davis (video)

    I'm being honest and hugely disappointed. The highlight and big star of the Symposium was the trap and now we are told it's unreliable. I'm not blaming the Researchers, I know they are trying but I myself feel like stopping following the whole thing. @Ben H you forever put a shine on things when...
  4. neweimear

    (Video) OMF Scientific Advisory Board Member Mark Davis, PhD, Presents An Update on ME/CFS Research

    I thought the same, they are still obviously searching but no answers just yet. We just have to hope that it's sooner rather than later.
  5. neweimear

    (Video) OMF Scientific Advisory Board Member Mark Davis, PhD, Presents An Update on ME/CFS Research

    Oh God, me too. I can't take 'chronic fatigue'. So grateful for all the work but please use ME/CFS.
  6. neweimear

    The NIH Pilot Program: Wait and See - Tour de force blog by Jenny Spotila

    @Janet Dafoe (Rose49) any suggestions on how to push for action??
  7. neweimear

    Machine Learning-assisted Research on CFS

    @mariovitali thank you. But my question remains unanswered...how is a patient in scotland/U.K or anywhere else, a patient that is almost completely bedridden who crashes very easily going to find out what their unique regimen is? Who is going to test them? I know that in many countries gps run...
  8. neweimear

    Machine Learning-assisted Research on CFS

    @mariovitali I don't understand or have the ability to try to comprehend all you have posted. But if a metabolic trap is found to be cause of our disease....will everyone need a different treatment, combination of supplements etc....what about those of us not living in the U.S who don't have...
  9. neweimear

    Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

    Any perspectives on how long it will take to figure out.....I just continue to get sicker, there is so much wrong with us, it seems next to impossible to decipher what's causing what..
  10. neweimear

    Jen Brae '20 years' qoute

    Oh God....I am freaking a little. Its not going to be 17 years is it??? I had envisioned 5....10 at most for some new treatments to help us. We have had this conversation before....but 17 freaking years...anyone?
  11. neweimear

    Jen Brae '20 years' qoute

    Its so tough. But look, what if OMF come up with something in the next few years or less....I can't accept 17 years, I will be dead by then. Ron Davis does not envisage 17 years wait I'm sure. I know the feeling of not being able to relate...you are not alone. X
  12. neweimear

    Overview of the 4 Collaborative Research Centers, by Simon McGrath

    That was me!!! I was feeling so down, then Simon's post came through and later that day Jen Brea spoke about the crowd-rise for M.E Action, so both gave me a boost.
  13. neweimear

    Reddit event with Francis Collins

    Did he give any hopeful response or just the same ol dribble...sorry can't read through it all. Just wondering if anything hopeful said?
  14. neweimear

    Reddit event with Francis Collins

    If anyone is on the reddit event tmrw, please ask Collins if he is aware of all the lives lost to M.E, people dead and buried because NIH have refused to act appropriately. M.E can be life threatening/fatal....does he get that?? I cannot attend, I feel it's an important question. Also...
  15. neweimear

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    Is that just dca though, I am enquiring about the actual supplement Frank is trialling?
  16. neweimear

    Treating patients suffering from ME/CFS with sodium dichloroacetate (pilot trial)

    I haven't read through thread...does anyone know how long it will take to get Frank's supplement to market?
  17. neweimear

    Cortene Peptide for MECFS? "Curative"?!

    I would say somewhere between a two and five year time frame
  18. neweimear

    Cortene Peptide for MECFS? "Curative"?!

    We will know by the end of this year whether it works or not in the first trial on ME patients. If it does, great!! It could take a few years to get it to market but I imagine it could be speeded up as we have no fda approved drug for ME. Hold tight is all we can do.
  19. neweimear

    Lipkin at the NIH: NIH Telebriefing Transcript Available

    Is there something off about Ian Lipkin...I just can't fully trust him....can't put my finger on it. I hope I'm wrong, I hope he is doing his genuine best to help us.
  20. neweimear

    Microbiome, "Leaky Gut," and Autoimmunity: Connected & Treatable

    The email addresses are; Ian Lipkin wil2001@columbia.edu Maureen Hanson mrh5@cornell.edu
  21. neweimear

    Microbiome, "Leaky Gut," and Autoimmunity: Connected & Treatable

    Could someone email link onto Lipkin and Hanson...I emailed both recently about filgotinib (sp?) so don't want to email again...Lipkin responded that we needed mouse model of ME.... I received no response from Maureen.
  22. neweimear

    To treat some diseases, researchers are putting immune cells on a diet

    http://www.sciencemag.org/news/2018/03/treat-some-diseases-researchers-are-putting-immune-cells-diet @Janet Dafoe (Rose49) @Ben H
  23. neweimear

    Ben H on the guitar

    Thank you Sushi, isn't it fab!
  24. neweimear

    Ben H on the guitar

    Mary, I have no idea, I am sorry. I must have half signed up for twitter at some point and now I get an email each day from twitter so I can read tweets of people i follow. I am so not tech savvy!!
  25. neweimear

    Ben H on the guitar

    @Ben H I can view tweets but can't respond or tweet myself on my phone. BUT I just saw your tweet and listened to you play. That was amazing Ben, I loved it. You are very talented! I love music myself and played piano alot before illness but can only do a little now. It was such a treat to...
  26. neweimear

    2018 is on track for a Record number of MECFS papers published.

    Yes would love to know numbers minus bps crap...
  27. neweimear

    Any time of a day better for anyone?

    I wonder is feeling better after 8 p.m. more common among severe patients or is it something that occurs at all levels of ME
  28. neweimear

    Any time of a day better for anyone?

    After 8.30p.m. I feel my best. This has been consistent from day 1 of my illness
  29. neweimear

    Switch to turn off inflammation.

    https://www.irishtimes.com/news/health/scientists-discover-promising-off-switch-for-inflammatory-diseases-1.3443334?mode=amp. @Ben H @Janet Dafoe (Rose49)
  30. neweimear

    What is your personal theory or understanding of ME/CFS?

    Thanks Jim, can I ask what exactly you are doing to treat leaky gut? Is it dietary changes alone?