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@Kalliope @Snowdrop @Jan Thankyou for the resources! I will get the book and check out the other links.

My 33 yr old daughter is 95% bed bound. Ill for 2-3 years, and progressively getting worse though we are trying treatments with a ME specialist in NY. The caretaking support at my local hospital seems to have no knowledge or experience with ME. I'm looking for resources for caretaking info...

Is there a way to get a recording of this call? I missed this and would love to get more info

I'm going to throw in my humble two cents... Possible magnesium deficiency? Muscle cramps & panic attacks are both symptoms Blood work does not consistently pick up magnesium levels. Don't have a link at hand, but have read this online and I am currently dealing myself with low magnesium...

I never had OI issues - but my youngest daughter does. The PEM, for me, was the very first symptom - the moment I realized that if I hiked a mountain ridge a second time in a day, I would be flat on my back for days... which is the moment I count as my ME/CFS start. My fitness was very high...

I felt like this too and had the same experience with exercise. However, in remission, I find I'm able to do everything - whatever was happening to me had no permanent damage.... which leaves me very hopeful !!

Started off mild - steady, gradual worsening over the years. Each worsening was the result of over exertion as I was still struggling to exercise and keep my fitness and didn't know better. The only 'scientific' info I could find online were to keep exercising - and I did seriously consider...

I just had a two day binge on cashew nuts and chocolate. Stopped my nightly foot cramps - away from home and off my regular diet - deduced it was magnesium deficiency. Back home, upped my magnesium intake and all is good again. I didn't understand why I was craving the cashews - I ate them...