lansbergen
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My best guess is its less stuck on than the off button is broken. We need to find that button.
I agree
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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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My best guess is its less stuck on than the off button is broken. We need to find that button.
I wasn't surprised to see PTSD mentioned. I'm going from memory here, but I believe Ron Davis has been studying PTSD and the effect of it on cellular level. He described a similar 'shut-down', specifically of the mitochondria, in the bodies of PTSD-patients, which would explain their symptoms. It would be interesting to find out if their metabolic pattern is similar to what they have found in PWME.PTSD is less clear. That does baffle me a bit. It is however an acute brain response to overwhelming stimuli, with long term changes to the brain. It is not clear there are long term metabolic changes, but its an intriguing question.
I wasn't surprised to see PTSD mentioned. I'm going from memory here, but I believe Ron Davis has been studying PTSD and the effect of it on cellular level. He described a similar 'shut-down', specifically of the mitochondria, in the bodies of PTSD-patients, which would explain their symptoms. It would be interesting to find out if their metabolic pattern is similar to what they have found in PWME.
Ron Davis has studied physical trauma, not PTSD.
OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us. But I'm still pretty sure he talked about mitochondria shutting down - I guess it was after physical trauma then? (burn victims?)Ron Davis has studied physical trauma, not PTSD.
OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us.
OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us. But I'm still pretty sure he talked about mitochondria shutting down - I guess it was after physical trauma then? (burn victims?)
Under Conclusions:
The study of larger cohorts from diverse geographical areas, and comparison with related medical disorders like depression and posttraumatic stress disorder, will be needed to validate the universality and specificity of these findings.
Why compare specifically with these disorders. Why not compare with MS or other?
There must be a reason these were chosen for comparison. I can speculate but would like to know their reasoning.
I predict that any condition that involves chronic pain or a chronic stress state with no current identifiable cause (PTSD, fibro, Gulf War Syndrome, chronic infection, POTS, chronic migraines, chronic depression, GAD) is going to show similar metabolic results.OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us.
My best guess is its less stuck on than the off button is broken. We need to find that button.
Some of this fits the theory/treatment model being used by Dr. Ty Vincent--the on button being stuck after some kind of a pathogenic assault. He is using low dose immune therapy. It does seem to "un-stick" the button, after finding the most appropriate antigens (to the original assaults), and giving them at low doses.I think Davis is right about the use of antimicrobials. I had antibiotic treatment for supposed Lyme disease a few years back and all I got for my trouble was more sick....But most people with ME don't get better on these treatments. It's not just me, these treatments have been dished out to lots of people and if they worked we wouldn't be where we are now.
BTW, all this stuff about hypometabolism in relation to hibernation, extreme cold, and famine is not relevant to us. By far, the number one most common reason for human beings being stuck in a hypo state (metabolism, adrenals, thyroid) is as a reaction to a hyper state. The hyper state (fight, flight, freeze response) being continuously signaled for is the real culprit.
Thank you so much for being the messenger and fielding our questions!!I am just the messenger here!
Thank you so much for being the messenger and fielding our questions!!
What about this phenomenon? We take something, it helps, then it stops working. An active hypometabolic state that is self-correcting would respond this way.I have some doubts about that because there is figuratively speaking, an army of patients constantly experimenting with supplements. Most seem to have had some limited success, but everyone is still ill.
What about this phenomenon? We take something, it helps, then it stops working. An active hypometabolic state that is self-correcting would respond this way.
Deep down i've never been a big proponent of the chronic infection hypothesis for CFS/ME. (Although it would be really interesting to see if the 100% verified lyme patients then chronic with it had same results, I doubt it). I think this study is quite conclusive in that regard. We are displaying the OPPOSITE metabolic activity of infection.
I absolutely think that infection can cause ME but it isn't required to explain the results here. That doesn't mean it is ruled out either, but in the absence of evidence, I don't think it's logical to assume a piece of the puzzle exists when it may not.