This is horrendous. I hope Esther Crawley and TV/Radio Dr Phillip Hammond (I think he works there) are both asked for public comment and are made...
Just heard they received a $1 million donation, thanks to everyone who posted. https://pineapplefund.org/
Great to see them engaging with patients. They’re also taking suggestions on their Facebook page. Good shout on the Biobank.
I just saw this in a FB group, hope it may be of some use. http://www.hfme.org/Word/Hospital_notes_for_ME_patients_Extra.doc
Perfect, I didn’t know you could do that.
Personally, I think a web page looks more formal especially to an external party or organisation. I appreciate its only a cosmetic point, it might...
Sorry if I wasn’t clear, I meant a web page rather than a forum thread, just wondering what the plans are for the future but im probably getting...
I know what you mean, they do host open letters on there but it may be better to put it somewhere on this site, like in a blog/pages section for...
Great letter, might be worth putting it on www.change.org as a petition to help share it, allow people to show their support and comment.
I left a comment on the Tedx Facebook page
Don’t you dare disrupt M.E.
Comments are now disabled and all previous comments are no longer visible
Looks like my comments show when I’m logged in but don’t when I’m logged out. Weird.
I left mine last night and it’s still there, so’s the sci4me comment. Wonder if there’s a reason some are removed and not others.
Agree, looks like change.org is the best platform for open letters/petitions. I’m not sure what the best course of action would be. Im Itching to...
I couldn’t stomach it, left a comment though.
I agree Alem should definitely win something, he’s my personal hero. I like Rons approach its refreshing and worthy of some recognition. But I...
It would be great to make this into an online letter we could all sign like a petition, but I don’t think there’s anything out there. I commented...
This is superb!
Whoop whoop, was worried for a bit there, thanks to @Sasha and @Cheesus and everyone involved.
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