Murph
:)
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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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So, that oddly familiar feeling I experienced when Dr Davis said 'by the end of summer', I think, is hope.
So, that oddly familiar feeling I experienced when Dr Davis said 'by the end of summer', I think, is hope.
"we think there's something going on that locks the patients into this and they can't get out of it.
If we can figure out what that control circuit is we may have a strategy to unlock it, that's our major effort at the moment.
Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease.
We have one primary circuit that we are looking at, at the moment, we should figure out whether that's right by the end of the summer".
I agree, I'm pushing 30 years with this illness. Back in the beginning, I was clipping magazine articles since the internet was just coming around. We have the biggest chance now at treatment than ever before. It is a chance though, and that's what I'm hoping for.After 20 years I also have no realistic hope anymore. At the same time, it's important to keep in mind that technology advances in a non-linear fashion and that medical research even in the 1990s was basically in the stone age compared to today. It sounds like they have obtained a lot of funding recently. Combined with silicon valley spirit of can-do ingenuity I hold a tiny sliver of hope that something will be found.
"Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease."
how would the central circuit be manipulated?
We have one primary circuit that we are looking at, at the moment, we should figure out whether that's right by the end of the summer".
Somewhere I seem to recall Dr Davis saying that treatment to reboot this circuit could pose risks, unless in the hands of physicians.
https://www.healthrising.org/blog/2018/04/03/a-metabolic-trap-for-chronic-fatigue-syndrome-me-cfs/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.
And as an aside: so many patients here have tried trillions of supplements, and then there are those who cannot tolerate any.
"Because that would possibly mean that we don't have to develop a drug. There may be ways to manipulate that central circuit to get people out of the disease."
how would the central circuit be manipulated?
What I’m curious of is if the assay works so well at separating CFS from non CFS patients why can’t it be used as a diagnostic test yet?