• 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. W

    ME as a permenant damage to the central nervous system

    But what does Dr. Jekyll say? ;)
  2. W

    ME as a permenant damage to the central nervous system

    I agree with BrightCandle: I've had my ME abruptly switch from full ME to full non-ME over the space of minutes, which is strong evidence that there isn't permanent damage involved. I've also had abrupt switches from long periods of just dragging myself around, to feeling energetic enough to go...
  3. W

    Brain functional connectivity in people with ME/CFS

    This is the kind of study I'd been waiting for, to find out why our brains aren't working properly, and hopefully to divert funding from studies of what are most likely downstream effects to more upstream dysfunction. Only a small study, and unfortunately without any non-healthy controls, but a...
  4. W

    Biomarker study MedUni Vienna

    The paper didn't say that there weren't any viruses in the brain. It was that the Covid symptoms weren't due to active viruses in the brain. I assume that still needs replication, and doesn't rule out symptoms due to dormant viruses or viral fragments or other such possibilities. I like that...
  5. W

    Not being able to get sick anymore

    I think this is something that varies with time, and maybe the virus. I think I went for years without catching a viral infection, but have had a flu three times in the last few years.
  6. W

    Dr David Tuller interviews Adam Lowe about NICE's Response to Uninformed "Eight Anomalies" Critique of ME/CFS Guidelines

    Thank you for posting a video link rather than the actual video that we can't stop our browsers from automatically downloading and processing. Some of us don't have fast connections or unlimited data, so I never watch videos, and unwatch threads that have videos.
  7. W

    Severe LDN side effects continuing even after stopping the medication?

    LDN is a bit tricky, since instead of a straight dose-dependent action, it has a peak optimum dosage. I started with the standard prescribed 4.5 mg and that worked great--for me--with no problems. I experimented with dosage, and found that it had full effects at (IIRC) 2.25 mg, but practically...
  8. W

    40Hz sensory gamma rhythm treatment

    https://www.sciencedaily.com/releases/2024/02/240228114328.htm I thought this was interesting. I don't know whether it would have real use as a treatment, but if you believe that glymphatic dysfunction plays a role in ME (@Rufous McKinney), it seems easy enough to experiment with. A 40 Hz...
  9. W

    Epigenetic Editing to Treat Diseases

    https://newatlas.com/science/epigenetic-editing-cholesterol-gene-silenced/ Progress in using epigenetic editing to treat a disease). Not something we'll see immediately, but if ME proves to involve specific genes, this is a tool that might help eventually.
  10. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I don't know how strong the vibrations are, but could they be strong enough to cause microtears in tissue, resulting in activation of the immune system? Thus not exertion, but immune activation.
  11. W

    Severe LDN side effects continuing even after stopping the medication?

    As hapl808 pointed out, ME is about individual responses. LDN works really well for some people, and I think negative effects are relatively rare, so I think it's a good gamble. It worked really well for me, with no negative effects. Pretty much everything, even normal foods, have some risk...
  12. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    The latest rebirth of the old "melt your belly fat away!" fad popular in the 50's or 60's? I think it used a belt pulled back and forth across your belly.
  13. W

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Good point. Have psychologists produced any useful studies on neurologic diseases that have a clearly-identified physical cause? Have they produced any useful treatments for such diseases? Conversely, have they proposed treatments for such diseases that resulted in harm to the patients? (We...
  14. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I noticed this news item today: https://newatlas.com/medical/zinc-lung-macrophages-anti-bacterial-cystic-fibrosis/ Zinc can be an effective treatment for some people. However: " the researchers found that, in CF, lung macrophages can’t properly use zinc as an anti-bacterial agent." So, this...
  15. W

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    If you sealed the edges well, you wouldn't get significant signal power getting in. Bouncing around won't increase the power; it'll just get quickly absorbed by materials in the room. If you put up a few strips of foil, covering 20% of the room's surface area, you'd decrease EMF power levels...
  16. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    I was thinking further about it, and the abrupt change in symptom severity is more likely the neurological response to immune activity. "Flu symptoms" are mainly from the brain's responses to cytokines, so blocking those signals or altering the neural response could cause the rapid change in...
  17. W

    Is electro-magnetic field (EMF) hypersensitivity a real thing?

    Aluminum foil is cheap and available in stores. Visit a dollar store, pick up some tape or glue while you're at it, and you can line a room with it, or cover some standing screens with it. Near 100% shielding for just a few dollars. Even a small piece of foil can block signals from a router...
  18. W

    All hope is lost

    Psychologists seem to be adept at changing definitions to fit their theories. I imagine them declaring success in healing broken legs by changing the definition of "broken". That was my thought too. "I'm done with this stupid torture. I'll say that I fully recovered, just let me out now."...
  19. W

    Is your worst fatigue in the morning too?

    I also feel better in the morning and then at some point in the late afternoon, I feel worse and can't even read for long, and then back to better in the evening. I haven't tried to time it accurately enough to see whether it changes with Daylight Savings or other circadian rhythm changes.
  20. W

    All hope is lost

    That's interesting. Are any individuals or groups tracking "value for money" for government departments, research organizations, etc? I could see journalists jumping on stories about "NIH scorecard: $x00 million spent over y years: 0 successes". That's the sort of embarrassment that can get...
  21. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    Do t-cells respond that quickly though (switching over a period of minutes)? If t-cells were fighting viruses in the body, would a signal in the bloodstream for "temporary lull" suddenly turn off all the neurological signals associated with immune activation? I think hormones and some toxins...
  22. W

    All hope is lost

    All hope is not lost. Did you really believe that an NIH study was the one true path to solving ME? The NIH hasn't shown any real resolve to solve ME, so the studies they do fund are mainly for NIH political purposes. Sadly, there's a lot of ME research meant for personal or political...
  23. W

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    No, you were able to physically exert yourself despite the "fatigue-like" symptoms, but you weren't able to make the "fatigue-like" symptoms diminish. The psychologists would like to believe that the fatigue-like state is psychological, so you can reduce that symptom by simply thinking positive...
  24. W

    Avindra Nath finds T-cell exhaustion in ME/CFS, which weakens immunity, and is possibly caused by the persistent remnants of a viral infection

    The theory runs counter to my experiences. My viral infections tend to last just a couple of days, and seem to clear fully. I've always felt that my immune system was more effective than average, and that didn't change with ME. Would symptoms due to "exhausted t-cells" be able to switch 100%...
  25. W

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    Yes, their chosen term is quite awful. I read it as meaning that the part of our brain that creates our willingness to exert ourselves is malfunctioning due to a biological mechanism. I expect psychologists will interpret it differently. We can't "push through" our fatigue-like state because...
  26. W

    Why does my bedbound partner have PEM every day, despite doing nothing?

    I recently read a news story about a technique for turning sewage into "high-value activated carbon". Do they think people will accept burnt sewage for facemasks or water filters? Would you?
  27. W

    Substantial improvement with (strange) dietary adjustments

    I think it is difficult to completely eliminate a strain. I had my type IV food sensitivity for 2.5 years, which included many dramatic diet changes and several bouts of antibiotics that had no effect on the sensitivity. Then some spoiled coconut milk gave my gut a good flushing out, and the...
  28. W

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

    I can't judge the quality of the study, but it definitely fits my beliefs about ME: that the "fatigue-like symptom" is effort preference based, rather than metabolic, and the autonomic system isn't working properly. Also that there are relatively small shifts in a number of factors (immune...
  29. W

    Why does my bedbound partner have PEM every day, despite doing nothing?

    It might not be PEM. I have baseline symptoms without PEM, and my PEM was a worsening of those symptoms. PEM is "post-exertional", so if the symptoms are there without exertion, can it really be described as PEM? If you don't fixate on "PEM treatments", you can explore other possibilities...
  30. W

    Substantial improvement with (strange) dietary adjustments

    I had a similar response to peroxynitrite scavengers: the more effective a spice or herb is at scavenging, the worse my ME symptoms. I didn't have a problem with anthrocyanins, so it's a different mechanism. ME is just plain confusing.