Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 8, 2013.
Thanks, that's v. helpful!
SOC, I'm not sure what you mean. I don't have answers, I'm just aware that there has been a general campaign to drink 8 large glasses of water a day (at least there has been in th uk) that it's the bottled water industry hype and it's just not true.
I don't know of any recommendations for ME about drinking tons (quarts ) of water. If you don't do something to make the water stay in your body, ostensibly to bulk up blood volume, (I don't know if this happens though) all that will happen is you will pee it out again. If you don't, you will start putting all your electrolytes out of kilter.
My own experimentation with using rehydration salts did not work... not when I used proprietary uk ones.
I did find some Spanish ones my OH had brought back from a cycling holiday, and I used them.
For some strange reason, they really did seem to help with my energy. But I ran out of them and they seemed horribly expensive to buy from inside the uk.
Later on, I found otherPWME had had considerable improvements using the same ones, (all anecdotal, gleaned from forums I found comments on while googling the stuff. Not forums I'm signed up to.)
However, I haven't pursued this or tried to get my mitts on more of the stuff since.
Have you looked at the ingredients in the Spanish product to see if you could make something similar yourself?
I thought I'd replied (my pc cut out in the middle though).
I did work out the ingredients I must have had my brain on that day - but I didn't have the relative proportions of each, which I assumend was what was important.
The big problem with proprietary ones in the uk is they're all full of aspartame. I'm sure the Spanish one had glucose.
It was all a very long time ago and I didn't persevere with trying to get hold of more because of the cost.
So they're going to focus on symptom treatment and management and encourage life style management. Looks like a lot of veteran ME Docs and researchers are refocusing, moving on or retiring.
This is hardly a celebration of hope and progress. From what has been posted it seems to be very poor quality and nothing to do with ME.
You can also try a Google Site Search
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