3. ME3 is not really a subgroup, but a causal component. It may ‘gang up’ with other MEs so that they feed off each other through regulatory pathways. ME3 is a resetting of brain sensitivity to all sorts of ‘noxious’ stimuli. It may well operate through feedback involving the autonomic nervous system. In some cases it may be reduced by the sort of voluntary strategies encouraged by ‘talking therapies’ but very often I suspect it is completely impervious. My own analogy is my tinnitus. Sometimes it seems unbearable and stops me sleeping or enjoying the quiet countryside and at other times I forget I ever had it. When it is there I cannot tell myself to not have it.
. ME5 is a speculation rather than something I have evidence for, but the specific autoimmune types I have given so far will not cover the majority. There is at least one more type needed and this is my guess. ME5 involves a sensitisation of the immune signalling mechanisms triggered by viruses. As part of an immune response to a virus the system produces antibodies that sensitise the ‘virus alarm system’ to the extent that even when there is no virus around it may trigger, just with exercise or stress. Two molecules might be particularly important here: gamma interferon and the immunoglobulin receptor FcRI (CD64) which is used to ‘pre-arm’ phagocytes with antibody even before any foreign pathogens have arrived.
I suspect I have a combination of both of these. I seem to be fine at times: almost normal but then I seem to flare up from viruses, stress (to which I am now very sensitive) or just doing a little too much physically or mentally. Strangely sometimes I can do all of these things and not flare but at other times I seem to be very sensitive to a flare up as I am right now: with symptoms appearing to be triggered even by a 1% hydrocortisone cream I'm using for a mild rash (funnily enough, at times this month the rash has been a more pressing medical concern to me than this ME/CFS business which shows just how much I seem to be fluctuating now...).
I do seem to be getting these periods more and more infrequently and can do more and more when they're not present so I'm optimistic of improvement but the symptoms are still incredibly unpleasant when they're with me. The most disconcerting has to be the internal tremors I feel when trying to sleep at times: almost like a strong adrenaline rush. Whenever I'm in this flaring stage my lymph nodes always seem to be swollen in my neck and behind my ears so make of that what you will. That said my lymph nodes seem to have gone down and I haven't suffered with the acid reflux that was so common for me last year in quite a while now. Hopefully this oversensitiveness is abating slowly.
Strangely I seem to feel at my worst while lying in bed in the morning: all my muscles seem to ache and at times I feel like I haven't the energy to even move a finger yet once I'm up and about I feel much better and can partake in most activity. I certainly seem to suffer from the strangest sensations and symptoms... It just sucks that I seem to be so sensitive to things now; that coupled with my migraines of which I've always suffered makes me feel like I'm having to avoid that many things it's getting silly.
My triggering event still stands in my memory as strange as it was both acute and somewhat drawn out... Immediately following the vaccination I experienced graying of vision and almost fainted on the way back home: having to sit down for 10 minutes before being able to continue (having a migraine later that day) but then over the next couple of days all my lymph nodes came up and I slowly deteriorated from there onward; not helped by the antibiotics I received which really hit me hard and no doubt the stress of the illness. I still wonder whether I may have autonomic problems, POTS or something to that effect but the trouble is that ME, CFS, dysautonomia and even POTS are still all in their infancy and diagnosis is just so difficult.
