No, I took it sublingually (held the powder in my mouth for at least several minutes before swallowing). I didn't like the taste, but didn't consider it horrible. It stopped giving me remission from ME after taking it daily for a while; I don't know if the daily dose was a factor or whether it was going to stop x days after my first dose. When I rediscovered it as a PEM blocker, taking it daily didn't cause problems, but the effect lasted three days, so that's how often I took it. I prefer minimizing drugs, supplements, and other variations from normal diet. After a year or so of taking it every three days, the PEM-blocking effect became permanent.
If we don’t know how to get 100% better, do we at least know how not to get worse?
- Thread starter hunter1899
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No, I took it sublingually (held the powder in my mouth for at least several minutes before swallowing). I didn't like the taste, but didn't consider it horrible. It stopped giving me remission from ME after taking it daily for a while; I don't know if the daily dose was a factor or whether it was going to stop x days after my first dose. When I rediscovered it as a PEM blocker, taking it daily didn't cause problems, but the effect lasted three days, so that's how often I took it. I prefer minimizing drugs, supplements, and other variations from normal diet. After a year or so of taking it every three days, the PEM-blocking effect became permanent.
Davsey27
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This is just my own opinion but there definitely seems to be some indefinable point of no return.
The reason why I have this opinion is after being in the moderate category for decades, I sadly then found myself in a situation where I was forced into overexertion in order to make enough money to survive and pushing my body that way took me from being moderate to severe.
It then took me 5 long years in order to get my body back to moderate again. And that was five years where I no longer had to deal with the stress of work for a living or worry about my basic survival needs met.
While this is anecdotal, what I have gathered from that experience is that it is more than possible to reach a point in this illness if you became severe enough that it would take you more than the rest of your lifetime to recover from it.
If others are in this situation what would you tell them?
Would you have done things differently knowing what you now know?
Appreciate it Abrin
Abrin
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I feel a little embarrassed admitting this but I am not sure exactly what you are asking me. I would love to answer your question but I need a little more clarification.
Davsey27
Senior Member
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I feel a little embarrassed admitting this but I am not sure exactly what you are asking me. I would love to answer your question but I need a little more clarification.
You mentioned you were moderate but needed to work make money to survive and this put you in severe.Knowing what you now know would you have done it differently?
What advice what you give to others who are in a similar situation?
Abrin
Senior Member
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Ah, that is what had me confused for a second! No, I wouldn't of done anything differently. In all honesty, if I had to choose between going back to being severe ME/CFS again with a safe place to live with food and being completely homeless and on the streets and starving with moderate ME/CFS then I would have go with pushing myself into severe if it meant I'd have a place to live.
I really, really wish I had any good advice at all to give to others that are in a similar situation but sadly the truth of the matter is that I just got lucky. :/
I'd like to point out that advice about ME doesn't apply to all PWME; we all differ too much. A treatment or technique that is good for one person might be bad for someone else, and what one person needs to avoid at all costs might not be a problem for someone else. You need to judge the probability of someone else's advice applying to you based on how well you match their situation, and even that's unreliable. For example, if someone's description of gut problems matches yours quite closely, their advice to avoid raw shellfish might be worth following...but maybe it's just their personal sensitivity that doesn't apply to you.