Search results

That scene is heartbreaking

Im sure there is! Curious myself

This magnificent documentary on ME is now available on Youtube with english subtitles. Watch it, and send it to whoever needs to see what ME is. Edit: Please share this documentary! I think its one of the few that can actually help people understand us!

Ok how stupid is this idea.. The nervous system is getting signals when upright that the cells are not having enough energy or oxygen(?) so we get different kinds of OI-mechanisms activated as a response?

Denise, Very reasonable assumption! I think the same as u.. And do have orthostatic hypertension. Why is the question..

Currently crashing so this will be a bit short. Was 2 hrs out to meet doctors and by the end i struggled to walk and almost had a nervous breakdown (luckily i had so many panic attacks last year after worsening that i can feel incredibly terrible without freaking out about it) It got me...

Thanks for sharing BlueSky Is spikes dangerous though when were lying most of the time anyway? I thought it was high blood pressure over time thats something to worry about, but im no expert. Interesting about the medication, im kinda surprised u had no side effects. Maybe ill look into it

Exactly the same here

Sounds good! Its a simple test (just measurement at time intervals), so shud be possible to just ask for it!

Don`t mind at all! It seemed to be standard procedure when checking for ME, or maybe they will use it for some research I dont know. Looking at the wiki apparantly doxazosin,[15] carvedilol,[16] captopril, and propranolol hydrochloride has some effect. Im suspecting this phenomena to be...

So today i went to a hospital and tested blood pressure when lying, sitting and standing It went from 120/80, to 130/90 and to 150/100 Pulse went from 60 to 150 Orthostatic hypertension I have known i have this since the start, as i just tested it myself but forgot about it since no one...

To be honest i cant imagine this drug ever will have any effect on objective markers. ME-patients, as other severely ill patients, are likely to report improvement for a number of reasons (placebo, relationship with investigator, self-denial, hope, mood etc). If ur gonna do a case report at...

We were many that pointed out the irony of Vogt criticising alternative treatment in borrelia in a "sceptic" FB-group, now after criticism, the whole thread got closed for comments by moderators; and i assume he asked for it

Yea I think thats it too.. Together with the fact that the more u read about something the harder it is to stay objective (if ur minds already somehow made up)

Every time i discuss with lyme-patients they are 100 perc sure that eliblot isnt a scam (even though https://www.rivm.nl/en/news/new-test-has-no-added-value-in-lyme-disease-of-central-nervous-system?fbclid=IwAR0EYBElRr1f3-fiuXLUG609OlJeFHAcfSl0dNDmBZjurI1a3iUHRmr_GeQ), cant get my head around...

Sorry to hear that, that's rough.. Certainly seems to run in families so i guess there are some responsible genes

Lol i expect this to be a mess

You aunt has ME too? :/ Interesting! Yea im 99 % certain its not a heart issue but a nervous system issue ive been tested many times over and also taken ultrasound so..

I agree, seems like exactly the kind of systematic reviews that are needed. I agree with Mithriel however that its pointless to investigate intervention efficacy (when its not criticism)

Heyya I thought I wud give an update with regards to the post It was near impossible to figure out what comes first here, the chicken or the egg? Ive had 10-20 more episodes since the post, mostly occurring when I try to make dinner. After i overexerted with training i really struggle with...