• 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.

    To become a member, simply click the Register button at the top right.

Search results

  1. H

    Itaconate Shunt (now called INFa-Itaconate shunt) Part 2!

    I have this experience too, with progesterone
  2. H

    Has there been any news from Dr. Davis or others?

    For goodness sake. Still no movement on the nano needle. What about all the donation money the omf get? Surely, the nanoneedle is more important than most? It's all so bizarre and makes no sence. Years and years of the same words. I've had enough of it all.
  3. H

    Is there any positive upcoming news???

    I lost hope too. I had such belief in Davis and Phair, but too many years have passed now. They should have found something significant by now. Nothing changes from year to year. The same requests for money; yet no further forward literally whatsoever. It is so sad.
  4. H

    What is happening in the body re pain ?

    Look up the pain revolution and the website 'tame the beast' - both by lorimar Moseley. Its fascinating stuff and based on the latest knowledge of neuroscience. The uk is utterly rubbish when it comes to m.e and help for us - I stumbled on Lorimar and pain while trying to help myself. It has...
  5. H

    What is happening in the body re pain ?

    Recommend looking at Lorimar Moseley from Austalia. He is amazing. He co wrote explain pain and many other books. There are lots of YouTube videos to watch of him, Tedex and uni talks. It really opened my eyes and his ideas now form a lot of NHS work into pain conditions.
  6. H

    New update from Prof. Ron Davis on the 'Metabolic Trap' hypothesis

    It's just tough. Being in the uk doesn't help. I am praying every day that I will get just a few years of health, one day
  7. H

    New update from Prof. Ron Davis on the 'Metabolic Trap' hypothesis

    I just wish upon wish it would all move with speed. I remember Robert Phair when he initially brought this idea to the open. That was a fair few years ago now. What's happened with the nano needle now? Has that one been abandoned? It seemed so hopeful and in my naivity I believed an answer would...
  8. H

    OMF funds new treatment-focused project - Neuroinflammation

    Of course they are spending money on something that doesn't lead to anything. Its what they always do. I gave up on OMF a very long time ago.
  9. H

    Symptoms better when walking/moving

    I have thought this for many years. I can and do improve significantly, albeit short lived, after a short amount of activity. Yes it's a balancing act. If there's something in the blood causing our symptoms, perhaps moving the blood around changes/alters/modifies that something, hence why we...
  10. H

    webinar on Long Covid and Herpesviruses on 20th September at 14:30 ET. - Bhupesh Prusty

    Has he got bored of M.E now???
  11. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    And I've opened my mouth, I've spoken of my genuine confusion, that has not be answered, so do not presume nor patronize. And neither have I once questioned the genius that is Ron Davis, who I am truly thankful for. It was the lack of funding for his important work that I questioned. I am...
  12. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    Fella? I'm actually female
  13. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I fear we will be waiting more than another 20 years sadly. I do not care for 'attacking'. I have just been getting more and more confused as to why such important research as the nano needle has not been funded. It defies any logic to me. And it makes me sad.
  14. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    And I go with Ron, except he doesn't appear to get the funding he needs for the nano needle and other research. And so we go round in circles again. I'm tired now.
  15. H

    Hormones as possible 'something in the blood'?

    And again, the week leading up to period and I'm so strong again. Something is linked. Wish someone would look into this
  16. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I for one have more faith in us patients. And Ron, who tells us with all his honesty, what he wants to happen; yet is totally lacking in funding. I say again, none of it makes sense. Patient directed research works for me!
  17. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    So you call 'over 30 million dollars' in 9 years (that's around 3 million a year!), plus 30,000 in one month this May a 'pittance'. Hmmm yeh right. I'm so fed up of not speaking the truth. Ron wants to study the nano needle! He knows how much it could help us. Why wont the OMF give one of their...
  18. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I did. Nothing. I just honestly and truly dont get it. And what is my little lone voice honestly worth? Nothing at all. I saw that the omf are funding a research tool (PASS) to help drs summarise patients symptoms. I mean!! Surely the nano needle is more important than this!! My voice is too...
  19. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    Choose wisely? Surely this is a wise choice?!? It could diagnose m.e. It shows, objectively, that something very physical is amiss. It has the capacity to discover drugs to help us. I for one think it is a very wise piece of research to use our money for!
  20. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I just don't get it. I hear you saying maybe the money is needed/was allocated elsewhere, that publishing is essential, that 5 million isnt that much. But. Ron keeps bringing the nano needle up as soooooo important, not only as a diagnostic, but also as a method of studying drugs to see if...
  21. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    Who cares about peer reviewing blah blah. If the money is donated to this specific research, can't the research just be done? I just want us to have an answer. Once that answer is found, then stand up and reap the applause that will come! Surely??!
  22. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I've started thinking this, sadly. I'm really really confused by it all I see omf getting load of big donations, like millions, but still no movement on the nano needle. There is no logic to this whatsoever.
  23. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    I'd actually really like to know why. I first heard about the nano needle years ago (2015?), but there has been no development. I've heard Ron say in his videos it is a very laboured process, and with development, it could process many more samples, yet it is never developed. I'm honestly...
  24. H

    [Twitter] Nanoneedle update Janet Dafoe - 15th June 2021

    Hi. How come none of the money raised by the omf goes on this very very important research? I honestly don't understand. They raise a lot; yet it seems their nano needle study gets nothing, when to me, it seems one of the most important on finding us a possible treatment for this horrid disease.
  25. H

    Bhupesh Prusty - latest research study

    I doubt it was as bad as mine. But then there are some who say it's all about perspective. Walking a mile in another's shoes ect. I really did not need his vent that day...
  26. H

    Bhupesh Prusty - latest research study

    I was not rude to him, and apologised for upsetting him and wished him care, although I only asked a very simple question in the first place. He did not respond to me.
  27. H

    Bhupesh Prusty - latest research study

    Remember this?...
  28. H

    Bhupesh Prusty - latest research study

    He showed us pictures of the 'something' he had isolated in our blood that were affecting our mitochondria. That is huge dont you think?! A very clear thing that he also said he knew what it was,but was very coy about telling us. I've been waiting and waiting for an update, so I asked him, and...
  29. H

    Bhupesh Prusty - latest research study

    Sorry?
  30. H

    Bhupesh Prusty - latest research study

    I felt exactly as you did when you heard. I had the same conversation with my parents. Its devastating. I am sending my best love to you today.