Live tweeting from IiME conference, Friday 3 June 2016

[Sasha]

Thanks also to two other audience members who are tweeting, plus RME (the Swedish ME Association, who are tweeting in Swedish). To see it all, just click here:

https://twitter.com/hashtag/IIMEC11?src=hash

Includes some photos!

Big thanks to the people tweeting - means so much to those of us too sick to attend.

 

[Undisclosed]

Excellent tweeting on Twitter by Phoenix Rising (not sure if that's you, @Kina!):

https://twitter.com/aboutmecfs

It is me.

 

[Sasha]

I hope Ian Gibson's opening speech will be in the IiME conference journal (available any day) - don't know if it usually is.

https://twitter.com/i/web/status/738646522796072960

https://twitter.com/i/web/status/738646829177393152

 

[Undisclosed]

Polo is talking about diagnosing ME but seems to be talking about clinical symptoms of EDS instead. Very confusing. It is very hard to keep up. Talking about hypermobile limbs, eczema, rosacea, cheloids -- all issues of connective tissue issues. Now trying explain how connective tissue issues are related to fatigue -- hypothetical

 

[Sasha]

Oddly enough, not all the Phoenix Rising tweets are showing up when I click that hashtag link, even though they're clearly using it. Not sure why.

@Bob, is something wrong with my hashtag link?

 

[Undisclosed]

Up next Professor Carmen Scheibenbogen -- Autoantibodies to adrenergic and acetylcholine receptors in ME/CFS

 

[Cheshire]

Oddly enough, not all the Phoenix Rising tweets are showing up when I click that hashtag link, even though they're clearly using it. Not sure why.

@Bob, is something wrong with my hashtag link?

Maybe you're on "top" (which selects tweets) instead of "direct ", shows them all

I hope it's the same words in english

 

[Bob]

@Bob, is something wrong with my hashtag link?

It looks fine to me. If using a browser on a PC you need to select "all tweets" (or similar wording) rather than "top tweets" (or similar wording). You should find the selection at the top of the list of tweets. (I'm going from memory, so might have the details slightly wrong.)

Edit: or follow @Cheshire's instructions (crossed posts).

 

[Sasha]

Maybe you're on "top" (which selects tweets) instead of "direct ", shows them all
View attachment 15926
I hope it's the same words in english

That looks very unlike my screen - I can see "Top" at the top left on the menu bar but if I click on it, it doesn't offer me an alternative. However, on "Options" at the other end of the menu bar, there's a dropdown menu and "All", "From everyone" and "From everywhere" were preselected.

So there seems to be a bit of a contradiction there!

 

[Bob]

Just to reiterate...

https://twitter.com/i/web/status/738650319912116226

 

[Cheshire]

Sorry @Sasha , someone with an English interface may be more helpful...

 

[Bob]

That looks very unlike my screen...

It looks very different to mine as well - it might be different on different browsers or in different countries. As long as you've found something to select then that's fine.

 

[Undisclosed]

Subset with altered autoantibodies can be treated with Rituximab, high dose IgG, immune absorption.

 

[Gijs]

Subset with altered autoantibodies can be treated with Rituximab, high dose IgG, immune absorption.

Thank you Kina! Do you know which Japanese study Scheibenbogen refers to?

 

[Undisclosed]

Thank you Kina! Do you know which Japanese study Scheibenbogen refers to?

Sorry no. She went through things rapid fire and was taking the slides down before my brain could read all the information. Could be this one -- http://www.ncbi.nlm.nih.gov/pubmed/12851722

It's break time now and I am totally exhausted. Thankfully, others are tweeting at the same time so a lot of the information should get out there.

 

[Sasha]

Thanks for all your efforts, @Kina - much appreciated.

Enjoy the break!

 

[Undisclosed]

Up next Dr Jo Cambridge -- B cells, Rituximab and ME/CFS

 

[Bob]

https://twitter.com/i/web/status/738676225225445376

 

[Sasha]

Did we know this? Jo Cambridge just said it.

https://twitter.com/i/web/status/738676407459557380

 

[Sasha]

Oddly enough, not all the Phoenix Rising tweets are showing up when I click that hashtag link, even though they're clearly using it. Not sure why.

@Bob, is something wrong with my hashtag link?

Aha! Clicking "Live" deactivates "Top" and shows me all the tweets.