I haven't begun to explore the Vit D role yet that is critical for some, or zinc or any number of other things. The descriptions are not complete by a long shot
Fredd. Vit D is certainly playing some role in all this. Ive had very low 25-hydroxy vit D at 31 (normal range 60-160) ...while my 1-25 dihydroxy D has always been in middle of the normal range. This day issue has been there my whole illness and my deficiency has gone even lower when I took standard daily 2000IU supplementation amounts of D3.
Last year after 2 previous abnormal EEGs (showing up a common ME abnormality) which were done in other years.. towards the end of last year.. I FINALLY had a normal EEG .. the ME abnormality is now gone. Then a couple of weeks back my sleep suddenly almost fixed itself over night (thou im still on melatonin but I suddenly dont no longer need to take my two other sleep pills).. Then this week.. I just found out my latest 25-hydroxy vit D test has suddenly come good, thou I havent been taking my D supplements (I was really put off of taking them in the past when my levels went lower when I was consistantly taking them.
So it seems Im heading towards a mend seeing my test results including that D (im doing nothing different.. still mostly housebound and only leaving house for appointments and shopping) are starting to correct themselves.
Whatever was making my D be down.. just isnt doing so now.
Two things which have made a difference to me this year are molybdenum (it helped my brain a lot.. I went from not being able to do maths in my head to be able to do it after only 5 days of taking it) and Selenium has had good effects on my body too. When I stop those.. I start going downhill in some ways again. There seems to be a ton of missing pieces to this illness.
A deficiency can be fixed. I quite purposefully and consciously refused to identify myself as being/having "an incurable disease". When I didn't WANT to do something, I said so. I didn't spread the disorder into all parts of my life by saying "I feel too sick to do xxx" when I really meant "I didn't want to do xxx". I have watched many people make their "home" in the chronic illness and spread it's influence in their life becasue they were not being honest with themselves or others about "want" versus "can't"
I dont know what to say to that.. yeah deficiencies can be fixed if deficiencies are all ones issue.. there are so many different things thou one could be deficient in.. (I personally doubt my brain would of recovered with something else the way it did with the molybdeum.. that had the same kind of dramatic..but in a completely different way .. to what B12 injections did for me. B12 injections increased my memory, while molybdenum gave me a "working memory" eg able to work out things in head for the first time in years and years. (I still have a lot of other things to experiement with but many things others have tried havent made any difference in me)
Maybe you made excuses for not doing certain things in your head (refering to what you posted) ..but not all of us are doing that. Some of us when we say we cant.. we actually cant.. to do so, we actually at times end up in hospital completely unable to care for ourselves (unable to walk/stand etc). I dont think that can be called making excuses when people are ringing ambulances cause one has gone and done something one shouldnt have done but wasnt listening to ones body enough at the time, due to to postive thinking etc (that's got me into trouble many a time when I overstep the boundries my body imposes on me..whatever this illness is.. its far more then something just in the mind).
There seems to be two different types of illness.. those who have an illness they can push throu without getting much worst.. and those who cant without severe consequences. I have a ME/CFS friend who spends a lot of time in bed (where as I spend very little time nowdays in bed).. but if she has to go and do something when she is unwell she is still able to do so.
She due to how she herself is, didnt understand how I cant push myself till she saw me on the floor unable to get up at all. The reason why that occurred was just cause she'd talked to me about 1 min more then my limit thou I was sitting at the time!!!.. complete jelly legs which wouldnt no matter how hard I tried, they wouldnt hold my body up when I went to stand even supported. We arent all the same. You are sounding like my friend and probably wont understand how some of us get unless you saw it for yourself. Have you ever seen a ME case where the body just wont work?
Something very neurolgical happens. (I wish I had a third person here a couple of months ago when I having a bad ME episode to film two others attempting to help me to walk to the toilet while my body was spasming out all over the place.. to show you quite neurological ME.. I was almost being dragged by two people as i couldnt walk and couldnt coordinate legs... ) ..its offensive when someone thinks a person thinks we werent trying when things like that happen.
(that incident was what suddenly had a goverment disability services officer who previously didnt think this illness was real.. believing ME exists.. he was completely shocked what kind of state I was in that day. He was lucky to witness that on his 7-8th home visit as no way can I ever leave my house when like that ,so that was only the second incident that health professionals have ever seen me that bad.. health professions hardly ever get chances to witness bad incidences of this ilness).
Those comorbid conditions which come in with ME too.. just cause one may be able to get rid of some of the ME symptoms and are left with those.. it dont mean the ME is gone if all those comorbids one got due to it are still there eg POTS, orthostatic hypertension, abnormal low cortisol, low testosterone etc etc(I have a mass of comorbids with the ME.. this illness isnt about tiredness) seem to be part of it all. That D deficiency was part of it.. but now that is suddenly gone for no explainable reason.
To have a complete theory of this whole illness.. there must be a place in which everything fits. I personally believe no one has the complete answer to ME yet.
Just cause someone may not have tried your theory, it dont mean they havent tried or dont want to get well.. it probably means they are currently trialing other things right now.