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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Because the treatment strategy would involve tweaking one of the major systems in the body, though, it has the potential to do either good or harm. Worried that in the wrong hands, it could backfire – making ME/CFS patients worse – Davis and the Open Medicine Foundation are keeping the details of the possible metabolic trap under wraps until they know more about it.
Without the details of the biochemistry any explanation will be vague. I started thinking about metabolic traps 25 years ago. I presented a paper to an ME/CFS conference in '99 on one type of trap, which was later shown to be wrong.Is there someone out there who can describe a metabolic trap?
Maybe Lassie could be our mascot instead of the others I suggested. Except Lassie is probably covered under copyright.now where is Lassie?!
A qualified yes. It does not presume any ongoing immune trigger, and does not rule it out either. A point of concern is that ME and such infections or toxins or trauma might reinforce each other, each preventing recovery ... which means this would really be a subset of ME under this hypothesis, or perhaps a complication or comorbid problem.This theory seems to assume there isn't any ongoing immune activation or trigger. Am I right about this?
No. This metabolic trap hypothesis would predict major changes in metabolism. It may be those metabolic changes are activating the immune system.This theory seems to assume there isn't any ongoing immune activation or trigger. Am I right about this?
No. This metabolic trap hypothesis would predict major changes in metabolism. It may be those metabolic changes are activating the immune system.
I don't know what's up with me in a psychological sense but when someone says they've discovered a possible treatment but it's so dangerous they want to keep it under wraps i suddenly want to devote my life to figuring out what it is!
So a trap would be a metabolic state where things are so bad that the capacity to reverse that state to normal is gone. In chaos theory this would be a pathological strange attractor.
For a more everyday analogy, its like falling into a deep well. You know freedom is just a few feet away, but you cannot climb the walls of the well, or at least not easily. Some might succeed, hence the rare recoveries or temporary remissions. In a temporary remission its like you almost climbed out of the well but then fell back in, perhaps injuring yourself further in the fall.
Now a healthy person might have a ladder, or stepping stones, or the well is very shallow, and so they easily get out of it when an infection or other physical insult resolves.
I assure it's not. He is quite worried that someone would hurt themselves. Phair looked over the draft but then Ron wanted some of it removed because of his concern.From the article:
I wonder if this is directed at practitioners, patients, or both. On one hand, it's really tempting as a patient to want to know more about the detail. On the other hand, it does get a bit worrisome to see people experimenting on themselves. I want someone to find something that works, but how many people here have tried and failed, possibly to some detriment to their own health. Maybe with a more rigorous and objective approach to finding proven results, some of that can be avoided. So hats off to the team for that choice, I'm sure it's not a choice that was made without hesitation. The community is very supportive to Ron and OMF, so to withhold information is not something that would happen lightly I'm sure.
A qualified yes. It does not presume any ongoing immune trigger, and does not rule it out either. A point of concern is that ME and such infections or toxins or trauma might reinforce each other, each preventing recovery ... which means this would really be a subset of ME under this hypothesis, or perhaps a complication or comorbid problem.