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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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In my own non medical opinion i believe CFS is initiated by gut hyperpermeability, in my case this is true. For others I cant say. I have many many reasons for that, angioedema, aggressive food responses, leaky gut test etc. This causes a immune reaction to shut down krebs to protect mito, or something to that effect. I also think in some way high stress changes microbiome to allow this to exist. Quite often I read CFS started with gut flu, infection, etc.
Yes I found this even when I was mild, i'd have to take snacks to work with me and eat them at around 10:30am between breakfast and lunch otherwise i'd start to feel spaced out. It would also happen on long walks > 5 miles. The funny thing was, I didn't think I had ME then, I just thought that was normal!
I haven't taken anything to support adrenals, what would you suggest?
Thanks, I appreciate the reply. I spend most of my day on the sofa with my laptop, so I can still get a lot done that way. There are some things that I like to do from the desktop in my office though, where I can reach my files, use the printer and copier etc, and being in the living room means I get disturbed a lot by people wanting to watch the TV or just sitting down for a chat when I'm BUSY. So longterm I'd like to be able to do a day's work on my desktop in the office, it's more convenient to work in there and it's a good test of whether I'm ready to do any of the stuff higher up on my list.@TiredSam I feel ya on the problems sitting in front of a computer. What has really worked for me is buying a laptop tray, like this I can just lie in bed and deal with whatever I need to, of course this is assuming you have a laptop. Having a wireless mouse and keyboard have helped as well
Agreed on the gut issues. Before my decline into full blown ME, I had two pretty significant spells of illness related to the gut, the first was a bad case of dysentery and the second was severe abdominal pains followed by what felt like PEM for the next few days/weeks. I believe it was these episodes which started my downward spiral, I was never the same after them.
I see comments like this VERY often here at PR. It sounds to me like whatever caused the dysentery, probably altered your microbiome enough to either cause, or worsen, intestinal hyper-permeability.
Then, lipopolysaccharies(LPS) from bacteria in the gut, get into the bloodstream, cause immune system dysfunction, mito. dysfunction and other symptoms.
Like gregh286 said, I think it's the LPS that are causing the dauer effect in the mito that Robert Naviaux talks about. Causing them to hunker down and go into a state of hypo-metabolism. This is what I believe anyway.
Treating the gut is very difficult for most, me included. If it pays off in the end, like I think it will, it would have been more than worth the effort!!
Colostrum meant to be pretty good for leaky gut.
@AdamS how are you doing?
Not great at the minute! I've come down with a throat/upper respiratory tract infection.