• 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 (FM), 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. Tally

    Dr David Tuller: HRA Report Does Not Vindicate PACE

    I think you misread that part. 1. HRA told Bristol University to launch an independent investigation of research done by Professor Esther Crawley. 2. HRA also released the report on PACE trial. Esther Crawley has nothing to do with 2.
  2. Tally

    how to keep the inmune system strong?

    Wouldn't for people who have auto-immune diseases, MCAS or over-reactive immune systems strengthening immune system be a bad thing? Sickness doesn't give us symptoms of colds. Sickness doesn't give us fever. Our immune system does.
  3. Tally

    Am I of autoinmune subset?

    We don't even know if there is an autoimmune subset of ME, let alone how to find out if one belongs to this group in clinical settings. All your questions can be answered with simple: no one knows yet. But it's not all gloomy, there is research about it going on right now and I believe...
  4. Tally

    PBS doc on James Watson (OMF board member)

    The advisory board of OMF was chosen so that the title page of OMF can read "Three Nobel Laureates, Six National Academy of Sciences Members". It sounds impressive and it helps with being taken seriously and with fundraising. Is it now Dr. Davis' fault too that our whole society is racist and...
  5. Tally

    A Metabolic Trap for ME/CFS?

    http://tylervigen.com/spurious-correlations :angel:
  6. Tally

    A Metabolic Trap for ME/CFS?

    Please keep in mind that despite what the article or the authors say this study has absolutely nothing to do with CFS. It was a study on hep C patients who developed prolonged fatigue due to interferon-alpha treatment. It was also a study conducted by King's College London shudder David Tuller...
  7. Tally

    Latest Research out of OMF

    @Janet Dafoe (Rose49) already told you 3 days ago that it was supposed to be in the paper and that Dr. Davis is looking into it https://forums.phoenixrising.me/index.php?threads/omf-funded-rbc-deformability-paper-published.62374/page-5#post-1021388
  8. Tally

    OMF-funded RBC Deformability Paper Published!

    To be fair the whole ME field suffers horribly from lack of ANY reproduced research, and that's totally on people deciding what to fund, not on researchers. This research was made possible by OMF's fundraising capability and was entirely funded by donors (many of whom are impoverished...
  9. Tally

    Special Message for you from Ron Davis (video)

    This is not a discussion about semantics. You can call it a rainbow dragon lollipop for all I care. This is about the fact that their hypothesis are different. To say otherwise is misleading. Yes, some aspects of their hypothesis are finally converging after decades, and that's exciting, but...
  10. Tally

    Special Message for you from Ron Davis (video)

    Not really. Reseting HPA axis, turning off cell danger response and lowering the amount of tryptophan in cells are not different pieces of the same concept. Never say never, so maybe some day far down the line they find something in common, and it's not necessary for all the others to be...
  11. Tally

    Special Message for you from Ron Davis (video)

    It's not the same idea. It has one similar part - that there is no pathogen but that our bodies themselves have a fault that keeps us sick (as do countless other diseases). Other than that those are three very different hypothesis, with different triggers, different causes, different...
  12. Tally

    Special Message for you from Ron Davis (video)

    It's not the same idea. I don't know where you got that from.
  13. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    UPDATE: It's been 17 days since I've gotten the flu shot. Quadrivalent vaccine into my upper arm. So now the immunity to flu has already developed and I didn't have any worsening. I'm just as horribly ill as usual :p
  14. Tally

    OMF-funded RBC Deformability Paper Published!

    I don't know enough to know if what this paper found is the same cell deformability as found in schizophrenia. M.E. is definitely a purely physical illness, but I happen to know a person with schizophrenia. No one is telling them their illness is not real, no one is telling them to get over...
  15. Tally

    how relevant is EMF to ME/CFS?

    For every BPS peer-reviewed article like PACE that said M.E. is psychological illness we had a hundred that said it's physical. That's why when OMF looked at all the thousands of peer-reviewed articles ever published on M.E. they concluded without a doubt that M.E. is purely physical. The truth...
  16. Tally

    OMF-funded RBC Deformability Paper Published!

    I will never understand how it has not always been clear that all psychological disorders are purely physical. Do scientists really believe that mind is some magical entity beyond the realm of the physical world? The mind is a combination of brain as a physical organ with chemical influence on...
  17. Tally

    Losing fragrance free options. Help bring it back!

    I've looked into this and scientific consensus is that aluminium in antiperspirants is perfectly safe
  18. Tally

    how relevant is EMF to ME/CFS?

    Just because trash gets through peer review doesn't mean what's not peer-reviewed is good. Just because planes crash sometimes doesn't mean you should jump off a cliff flapping your arms instead of boarding a plane. The solution is to push for improvement of peer-review process (and a lot of...
  19. Tally

    Community symposium on molecular basis of ME/CFS at Stanford Discussion Thread

    They didn't give patients tryptophan
  20. Tally

    NAC smelling funny

    What a nice way to say it stinks like a dead fish :p Yeah, my L-carnitine stinks too. I think they probably extract N acetyl cystein from fish too.
  21. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    Thank you so much for your answer! Can you please tell me, do you have any immunological symptoms? How often do you get swollen lymph nodes? How about neurological? Do you have POTS or tremor?
  22. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    I have the flu vaccine in my fridge and a nurse can come to my home to administer it. Doctors certainly tried to forget about me and abandon me since I can never get to the doctor's, but we don't let them so my mother goes in my stead. Washing hands often and desinfecting objects and surfaces...
  23. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    I am not worried about mercury since I eat fish and probably have a ton of methylmercury in my body already, which is the worst kind, and the amount of mercury that used to be in the flu vaccine is miniscule. I live in a region where people eat a lot of fish and have higher levels of mercury...
  24. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    My family is definitely getting the flu shot, and theoretically being bedridden does lower my chances of catching the flu, but how can I know if it lowers it enough to risk my life? My chances of being exposed to common cold are equally low, and yet I caught that. Despite the vigorous...
  25. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    I know but I was hoping to hear from at least one person who is as severe as me or worse.
  26. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    I think not getting the flu and not getting the vaccine would be the best :) Yet... I am completely isolated. Only my parents enter my room. We wash our hands all the time, don't breathe into each other, they are extremely careful when preparing my food, they wipe everything with alcohol before...
  27. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    Thanks for replying. I totally get where you're coming from, but flu kills about half a million people each year so it doesn't seem like there's any worse crap to get into your body that the real live flu virus, i.e. getting the flu. I don't think that's for me, I don't like natural stuff. ME...
  28. Tally

    Has anyone with severe ME who is completely bedridden gotten a flu shot (influenza vaccine)

    I read a lot of threads about flu shots, including MEA info leaflet and Griffith research, but I couldn't find anything about severely ill patients. Is there anyone who was bedridden 24/7 and completely dependent on other's help who got the flu shot while in this state? How did you react? I...
  29. Tally

    Keto debunked.

    Any 10 year-old needs adult guidance and can't be left to their own devices when it comes to food choices. I am not aware of any research showing that vegetarians, at any age, require laboratory testing that meat-eaters don't.