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Indeed, and well done & gratitude to everyone who has promoted the study in whatever small way. BTW when i said yesterday that i'm trying harder now, i just meant that it jumped higher on the priority list. I've been sacrificing self care in order to do other absolutely critical things so...

Tilly i dont really understand the point you're making... As i said it was very well done to the protesters because i am very aware of how much it will have cost them health wise to turn up. And they did a great job. We all know full well they are not the people responsible for it being...

oh but if the people protesting happen to see this... very well done! :thumbup:

i know i mean how can this and this go together?! Its sickening keeping reading people being conditioned to think i have 'extreme tiredness'. No wonder we've got people dying because the hospital doesnt want to go out of its way to help PwME, i mean if i was a Dr who'd been on shift for 36hrs...

yes i clearly missed that :rolleyes: am not on twitter & honestly i come on here when i am way too ill to be doing so, i just come on cos i lonely & end up reading things i have no recollection ive seen 20 seconds later :rolleyes: Anyway have done all i can now, so fingers crossed

ah good glad i not missed it..... I must say it has lit a fire under me somewhat! :D I been dealing with so much with other health stuff on top of ME this year and no carer, that i only told people i know well, it's been on my to-do list for months. But i have gone mad telling everybody on my...

Thanks @Andy I had no idea we were getting close to the closing date until this most recent newsletter. Was it publicised for a while (the closing date in november) & i just missed it?

I put a post in an MEA fb group i a member of today, to nudge people and there were a couple of comments & there was some confusion about how many more participants are required... I thought that since we had 18k & the target originally was 25k that we are currently 7k short of target, but...

Has someone alerted them to PACE? it'd be a great example for them to use i'd have thought. @dave30th you very likely well aware of this but tagging you JIC

I am so, sooo, hearing you. In fact its existence is largely denied.

thats actually really good. I'd like to print it out could you link to the source please @rvallee ? I worry about my loved ones they are so blase about covid now, i'd like to show them this, as it actually explains ME pretty well too

you've hit the nail on the head there i'd say :rofl: My cat started having something similar to non epileptic seizures (myoclonic jerks) she had all kinds of tests and they said they couldnt figure out what was causing it. I said to the vet & nurse, oh do you think its psychosomatic/behavioural...

thanks for that

Would love to get your take on this @Jonathan Edwards if you have time/energy

yes several people sniggered at me in the doctors surgery the other day, i assume the N95 was the reason. I take it off in the doctors room because she already thinks i a health anxiety/hypochondria person because thats what she thinks ME is i think. But i'm blowed if i'm sitting in the waiting...

TBH my response when i read that my response was "oh ______ right off you sanctimonious _____" exactly couldnt agree more.

bless you @bobbler thanks

you dont happen to have a link to that slide/ presentation do you Bobbler?

I agree with all you say @Simbindi I am def going to try to respond.

thats good news, do you happen to remember the deadline off the top of your head?.. its online is it ?... like filling in a questionnaire online? or do you have to formulate a response entirely from scratch. pls feel free to ignore these questions if they taxing you Simbindi yes we did this...