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Happy to see someone connecting the dots between PEM and sleep. Regarding medications/trials - I’m impatient. - Copaxone seems far away. A drug like that needs many years/trials before becoming avalable. - What about SS31? Is that more like a amino acid/supplement that could be on the market...

@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 Cyclophosphamide was “switch off, switch on”, not permanent suppression, was it not? Edit: I am not the one discussing with him on Twitter.

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 in an hour.

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 in one sitting, live streams are difficult for many of us.)

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...

Concerns about the procedure itself aside. I know for a fact that my local health service would never touch my neck after an experimental procedure abroad, no matter how minor or big the complication afterwords would become. I know of patients that have been declined help in their home Country...

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 (standing/sitting/horizontal), temperature, galvanic skin response and more.

@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 when the first LP-wave hit a decade ago. I knew all along that it was not for me, that it could not help me. Still, I spent almost a year doing...

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 microbiota today, I am 100% sure I would have given it a pass. @Dechi

@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 even able to tolerate drugs towards symptom relief of sleep and pain.

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 find dilating blood vessels to be very helpful against PEM/lactic acid.

@Jessie 107 have you considered Desmopressin instead? I find that to be more generally helpful for blood volume, even if I am horizontal. Less side effects, easier to stay on long time.

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 while but still being punished with OI/hypotension/fainting: quite helpful, but no miracle. There are side effects, I have never been able to stay...

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 someone who hated being in Lyrica myself - we are all different.) Have you tried different types of b12 injections? High dose Methylcobalamine is...

Is sodium cromoglicate still available in UK? It is suddenly gone (only eye drops left) in several European Countries... No doc or pharmacy are able to tell me why. @Ryan31337 @Robert 1973

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, PET scan, or a combination?