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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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@Sasha
Yeah I have seen that, but I am desperate and it seemed to work for this guy. I don't know what else to do.
I don't blame you for considering it! I don't know what to do either.
Sometimes I just want to curl up into a ball and cry, but I don't have any of that left in me. The pain of disease is more just an ever-present background drone now. Almost like a constant suffocating feeling. I need out
My fingers are crossed that this is the year that we finally get some treatment - not necessarily a cure, but at least a treatment that might take the edge off.
Does anyone know whether we can get reliable amino acid testing in the UK? I don't suppose we'll get it on the NHS, but it might be worth paying for.
Does anyone know whether we can get reliable amino acid testing in the UK? I don't suppose we'll get it on the NHS, but it might be worth paying for.
@Ben Howell - do you know if this is one of the things that would be tested for in the samples that Ron Davis would be collecting from us?
Can you expand @Sasha ?
If you mean by metabolomics, then yes, amino acid levels would inherently be part of the testing.
B
Has anyone else tried ISO 100? I'll get mine tomorrow after a 3 week delay (yah!). To test this properly could one try to only "eat" this for 3-4 days to eliminate all other sources of food that may contribute to our symptoms? Or is that a crazy idea?
Has anyone else tried ISO 100? I'll get mine tomorrow after a 3 week delay (yah!). To test this properly could one try to only "eat" this for 3-4 days to eliminate all other sources of food that may contribute to our symptoms? Or is that a crazy idea?