Search results

@TigerLilea I'm wondering how you're doing now? no pressure to reply, just thinking of you

hoping for the very best result for you @TigerLilea

i agree!!

excellent response Trish

'I'm sorry you are/you felt, upset/angry/hurt' etc is not an apology. Ever. It means im not in any way sorry for what i did, but i wish you werent upset/angry/whatever about it. Its a phrase thats been heard a lot in the UK rcently (not saying more as it would break the no politics rule), and...

its this bit that troubles me most because who's version of what happened are they going to use... I know there is a factual timeline, but the narrative can be spun in all kinds of ways & judging from previous BACME 'form' & membership, it makes me very uncomfortable imagining what kind of BS...

hmmm finding that a bit unnerving

'Medicines' are things i associate with childhood.... 'here we are little one, some medicine to make you feel better' "a spoonful of sugar helps the medicine go down........" etc Medication is the adult version. Infantilising sufferers. as. per. usual.

I started with heartburn & refux when i was 11. Nobody believed me at home - they just thought i was saying i had it because i heard my parents complaining of it. "You're too young for heartburn". But i remember the intrusive pain while at school, standing in the dinner queue & all my friends...

So full vaccination reduces risk of long covid according to this study?

wow, i didnt read that far. Thats grotesquely inaccurate! Is anyone in contact with him that can set him straight? I mean the extent of brain fog in LC i wouldnt know but for many of us its such a huge part, and lots of the time i'd be thrilled to have an attention span of 20seconds, never mind...

"we've seen in ME that there is actually seem to be a hyper adrenergic status for the people who are having their crashes." where's he got that from? in my experience its the opposite

Just felt i wanted to say that now, 4 wks after booster, i can say i am definitely back to my pre vaccination 'normal'. I feel so very sad & sorry to those who have had terrible experiences. My body certainly doesnt enjoy vaccines, but I am so grateful not to have lasting effects

but you were still reliant on yr dr actually testing for it. Cases get 'missed' because at least in the uk, many Drs arent (or at least weren't) interested in which virus you have, even when symptoms are severe/indicative of EBV. They just brush it off as 'a virus'

This post has been copied and following discussion moved from this thread If that happens please make sure there is an option for 'never tested/dont know'..... rather than just 'ever had EBV'? yes or no. Otherwise you'll get a lot of 'No' responses confounding the results. I mention that...

errrr.... how about doing the surgery really well, giving patients excellent care, and y'know doing your job, properly, respectfully, professionally & to a very high standard... that tends to predict the best patient outcomes IME. Precisely. People cant possibly be unhappy because of us, it must...

Thanks Kitty, thats very interesting. The thought of being in control when i'm out is making me cry it would be so wonderful.

One thing i would love to know, is whether any of these chairs/scooters are drivable by someone standing/walking with you... like a bicycle would be. I ask because ive never investigated getting one despite hating the fact that i have to be pushed everywhere in the manual chair & i'd love the...

great @Trish perhaps this study has already been thoroughly critiqued & the crit is the subject of this complaint Members only - Reddit post: "Nothing about us without us" advocacy group making research more difficult. How to handle? | Science for ME (s4me.info) It just research such as this...

I hope you will write to them @Trish you have written very eloquently there. I wish Jonathan were overseeing these projects, if we could clone you thatd be marvellous :D