What is your personal theory or understanding of ME/CFS?

morgan_25

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yeah, but what i mean is that environmentally caused inflammation probably involves more than mast cells. that it probably involves a pretty broad innate immune response involving macrophages, glial cells, etc... and also mast cells. so if it is not just focused around mast cells, would it make sense to conceptualize it as "mast cell activation syndrome"?

also most mainstream mcas doctors seem focused on it as this idiopathic thing where mast cells just overreact to things that are harmless, whereas i think its likely that what we react to, some of it is harmful to even "healthy " people
Oh I see what you mean. I don’t know it is all just so complicated and allergies are a whole other huge issue on its own, so to compile it with viruses, ME, MCAS, etc it gets BEYOND complicated. I guess if there is a particular test for MCAS, that is the best way to get the diagnosis instead of guessing, because there are so many things that it impacts and has many symptoms that other illnesses do like POTS, ME, IBS-D, Fibromyalgia, etc.
 
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I am curious to know if any of you guys have extreme allergies and if it seems to play a significant role in your ME and/or viruses.

I had severe allergies starting at age One. Allergies plagued me through childhood then seemed to subside.

But I suspect I have MCAS issues....
 

Wishful

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The issue is more complicated than so far described. We don't have "a" immune system, we have multiple ones. There are B-cells, t-cells, glial cells, and probably others. Normal allergies involve one system, viral infections another, cell damage might involve several. My ME seems to involve t-cells and glial cells, and isn't affected by type I allergies. For others, it may be different. The different immune systems do interact somewhat, so t-cell activation will also activate glial cells (warning them that an intruder might be trying to cross the BBB). I'm not sure of the interactions between t-cells and type I allergies.

For the question of whether I had immune system problems before ME, I seemed to have a strong t-cell system (didn't get viral infections often, and they ended quickly) and no type I allergies. I did, in retrospect, have what seemed to be a very slight but consistent type IV reaction to oranges. Then one day that slight reaction triggered what seemed like full-blown flu symptoms and type IV reaction to most foods. I managed to stop the type IV reaction after 2.5 years, but the symptoms remained, triggering only 20 minutes after eating (probably involving cerebral tryptophan metabolism). Eventually I figured out that it was ME. I can say that my ME symptoms were mostly identical to those from type IV sensitivity, which seem to involve kynurenines.
 
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Oh I see what you mean. I don’t know it is all just so complicated and allergies are a whole other huge issue on its own, so to compile it with viruses, ME, MCAS, etc it gets BEYOND complicated. I guess if there is a particular test for MCAS, that is the best way to get the diagnosis instead of guessing, because there are so many things that it impacts and has many symptoms that other illnesses do like POTS, ME, IBS-D, Fibromyalgia, etc.
but there isnt a single test for mcas. and i dont deny that mast cells are involved in an inflammatory pathology that many people have i just dont think that should be the end of investigation --like oh, i have mcas, take mast cell stabilizers, thats it. we need to find the root cause
 
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The issue is more complicated than so far described
When you say this, what in particular are you referring to? the thread is fifteen pages long encompassing a very wide variety of theories. which ones are you referring to that are oversimplified
. We don't have "a" immune system, we have multiple ones. There are B-cells, t-cells, glial cells, and probably others. Normal allergies involve one system, viral infections another, cell damage might involve several. My ME seems to involve t-cells and glial cells, and isn't affected by type I allergies. For others, it may be different. The different immune systems do interact somewhat, so t-cell activation will also activate glial cells (warning them that an intruder might be trying to cross the BBB). I'm not sure of the interactions between t-cells and type I allergies.
The bolded part I agree with. In me/cfs circles people often seem to talk about the immune system like its an on off switch, not recognizing that certain types of immune deficiencies are not incompatible with inflammatory responses /heightened immune response in some areas. For example, I have consistently low immunoglobulin G and A , both total and in several subclasses. But I have high IgE, high eosinophil count, and markers of inflammation such as tryptase, high mmp-9, histamine, etc...
 
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I suspect that its possible to have components of more than one type of hypersensitivity. I'm fairly sure Type II is involved in some mold responses due to c4a being often high, but type I is obviously also implicated, due to the presence of mast cell activation and IgE responses