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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 help it have more impact. One of the other open letters is spread over multiple posts for example. A forum thread can also easily go off topic...

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 ahead of myself :)

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 open letters. Does anyone know if there are plans to add this functionality in the future? Apologies if I’m creating work for people, I know it’s not...

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 sign something.

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 agree that Jen is the strategic choice, she has the public profile and is more likely to get support. I do wish she would repurpose some of the Unrest...

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 on The latest TedxB fb post and posted on their wall. I’ve shared it on a FB group too.

This is superb!

Whoop whoop, was worried for a bit there, thanks to @Sasha and @Cheesus and everyone involved.

Good idea have update

Other charities can apply too

Help OMF receive Upto $1 million as a single donation from a super generous bitcoin donor. OMF have already made an application but we can help make their case by upvoting and commenting on this Reddit post (you will need to be registered on Reddit) View Reddit post