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I'm trying this, too. So far (four days) I'm really appreciating the ease (just a quick morning and evening check-in) and the fact I could pick which symptoms I want to monitor most (so it doesn't get too cumbersome). I didn't see anything for orthostatic intolerance - but I'm using "weakness"...

I do think the finding of low glutathione is interesting - I definitely had that. But I tried NAC and also glutathione IV treatments and none of it helped. What is CAUSING the low glutathione? Otherwise it seems like trying to pour into a bucket full of leaks.

I had the same problem with stomach pain after being on LDN - but my integrative health doc prescribed a topical cream of LDN that I applied each night. Really seemed to nudge things the right direction (and no side effects) for several months, then stopped being effective. (That seems to happen...

I loved this!!! My hubby and I had begun hiking sections of a long trail before I got ill. Our goal had been to eventually complete all sections. But I no longer can hike more than a mile (and that's only on a very good day) (and many sections require hiking many miles to reach access). This...

Ron Davis up next! :-)

Fascinating talk right now about mitochondria fusion/fission activity.

ME/CFS patients differences in butyrate (not sure I'm posting this slide correctly, so I'm hoping interested folks can see it.)

Thanks, @andypants!

Are they currently on break? Instead of a black screen, I have the blue title screen. No audio or video.

Cut out for me, too. I've been trying to absorb what I can, but my brain has given up following it. :-)

The current speaker is emphasizing the need for standardized data points and data sharing. A lot is over my head, but what I understand is good and important. I liked when he told NIH they need to evaluate grant applications in different ways than how they've "always done it."

My main take-away from Naviaux this time was that using the means of studying and/or healing acute illness does NOT work on chronic illness. That might be a philosophical angle, but I do think it's important.

Seems like a gizmo is search of having therapeutic value to something (looks like they are proposing it to have value for migraines, and other conditions). I'd be glad to be proved wrong. I'll start wiggling my nose right now and see if I feel better. ;-)

Done. Lenny Jason is a treasure. The very wording of his questions made me feel HEARD. Over the years he has really paid attention to patient's descriptions of their experience. How refreshing!

Since I'd never heard of EV's, I did a quick google and see that they are being studied as markers in cancer, aging and other things. So perhaps it's more of a general "something wrong in the body" marker than an ME/CFS biomarker, but it still adds to the picture of the physical debility we have...

I would totally volunteer but I've been ill over ten years, so don't qualify. Since it often takes folks so long to even be diagnosed, it may be tricky finding those who have been sick the right length of time and know what they have. When I first was ill, the docs kept saying, "sometimes it...

Me too. I kept trying LDN in pill form, and after several days, would consistently get sharp stomach pain and GI probs. My doc prescribed a cream (comes in a syringe for dosing) that I use at night. It has helped with sleep and pain...and who knows what else. :-) No more side effects.

Done. I so appreciate Solve ME/CFS making it easy to do. Nothing to look up. Just added a quick personal note and hit send.

But at least she derided the term "yuppie flu" by using the word "snidely."

One of the difficulties with managing an energy envelope is that it's ever-shifting. Some days I have a bit more strength or last a few minutes longer doing basic self-care or a few household chores. Other times, even after lovely rest and NO discernible reason, I'll have a day of no function...