Happy to see someone connecting the dots between PEM and sleep. Regarding medications/trials - I’m impatient. - Copaxone seems far away. A drug...
@Jonathan Edwards thank you! Very helpful. (I was not the one discussing with him on Twitter, should have made that clear.)
@Jonathan Edwards Do you have a thoughts on VanElzakkers Twitter-comments on immunosuppression and ME? The theories behind both Rituximab and...
For anyone needing to save energy: little info on the content so far, practically just a list of attendants and headlines. The real stuff starts...
How long does it normally take before the videos are posted on OMF YouTube channel? And do they always post all the talks? (I can’t watch much...
Almost seems like they have realized that their theories can’t affect PEM? ;)
How I read VanElzakker’s concern: Cortene is simply recreating the LP/Cognitive therapy theories in pharmaceutical form... [MEDIA] [MEDIA] [MEDIA]
Concerns about the procedure itself aside. I know for a fact that my local health service would never touch my neck after an experimental...
This. + that it will scare others from thinking out of the box.
They used the brand Sensewear - used on the upper arm. Edit: Sensewear, also track a lot more than a Fitbit. Position...
@rainy @lunarainbows I am so sorry that both of you had to go trough this! I recognize so much from how I myself spent too much energy on research...
Long time antibiotics are one of the few things that have been able to quiet down some of my symptoms. Still, with the knowledge we have on...
@Kalliope so in conclusion... simply incompetence on all levels from that Center :banghead:
Agree, @Dolphin. I believe that the symtoms mentioned will fall into place as soon as the cause is targeted. In my experience, many of us is not...
I could not tolerate beta blockers. Never tried Midodrine, but I am wondering if tightening blood vessels would be any point to try as long as I...
@Jessie 107 have you considered Desmopressin instead? I find that to be more generally helpful for blood volume, even if I am horizontal. Less...
I am severe. As long as I am bedbound/horizontal: not worth it. During better periods where the ME itself is stable enough for me to sit up for a...
As long as low dose Lyrica works for you, you are tolerating it well and your doctor supports it, I would have ignored the warnings. (Coming from...
Is sodium cromoglicate still available in UK? It is suddenly gone (only eye drops left) in several European Countries... No doc or pharmacy are...
I have to watch this another day, but am really enjoying your reports! The Younger scans pictured with mostly green/yellow brains - is it MRI,...
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