30 & 31 May | Invest in ME Research international colloquium

[Trish]

Friday's!

Thanks @Sasha, I don't even know which day it is. In my head it is Thursday today... I'll go back and correct it.

 

[BurnA]

I wasn't invited to this so I don't know much about it

Are you still involved with Iime ?

 

[Sasha]

The focus on the food continues, though, looking at it, I can't blame anybody (I particularly like the jaunty sole banana on top of the pile of fruit!).

 

[Jaybee00]

So we won’t get any update on the cyclo study in the public portion?

Thanks

 

[Sasha]

So we won’t get any update on the cyclo study in the public portion?

Thanks

I don't see anything about it on the conference schedule (here) - Fluge and Mella don't appear to be presenting at the conference.

 

[Jaybee00]

Yes only today.....

Clinical Trials
Clinical trial Results: Rituximab
Dr Øystein Fluge, Bergen, Norway

Neuronal antibodies in Norwegian ME cohort
Angela Vincent, Oxford University, UK

Clinical trial Results: CycloME
Dr Ingrid G. Rekeland, Bergen, Norway

 

[andypants]

I think they have learned from the rituximab studies to be very careful with what they say before they publish. Cyclo is associated with some pretty heavy side effects and I’m sure they are worried that patients or doctors will go rogue again. With cyclo that is a much bigger risk.

(I have heard, from unconfirmed sources, that results are looking promising)

 

[Jaybee00]

Yes, agreed....

But according to @Jonathan Edwards it will be difficult to do any blinded studies due to the nausea effect, etc. of cyclo so there may only be more open trials....

 

[Jonathan Edwards]

Are you still involved with Iime ?

It seems not.

 

[deleder2k]

To my knowledge they are discussing a blinded cyclo trial, but I don't understand how they can manage to do it while keeping the study blinded. How is it possible? Could they make patients who get placebo nauseous in some way? Perhaps there is some drug you can give. Not sure if that will work, and whether it is ethically acceptable.

 

[Gingergrrl]

Neuronal antibodies? I didn't even know they were a thing.

They are another name for the paraneoplastic autoantibodies (like the anti calcium channel one that I have).

I would love to hear what Dr. Angela Vincent has to say about them, too. Is she presenting at the public conference or only at the private researcher part?

 

[Sasha]

 

[Sasha]

 

[ukxmrv]

They are another name for the paraneoplastic autoantibodies (like the anti calcium channel one that I have).

I would love to hear what Dr. Angela Vincent has to say about them, too. Is she presenting at the public conference or only at the private researcher part?

Has a look on the IiME conference (public) and Colloquium (private) and can only see her involved in the private one.

 

[Sly Saint]

 

[Awol]

Here's a search using the #BRMEC8 tag:

https://twitter.com/search?q=#BRMEC8&src=typd

A few messages up from the colloquium already (although they're from a stuffed bear!)...

ETA: The Invest in ME Research Bear is also on Instagram with the pictures from the colloquium: https://www.instagram.com/iimerbear/

Pizza-loving Invest in ME Research Bear debuted at last year's conference. IIMER Bear, Science Bear and Professor Bear are members of the family bearing the Let's Do It for ME logo created by Jan Laverick for the awareness and fundraising campaign launched back in 2011 in support of the Invest in ME Research Centre of Excellence for ME biomedical research programme (http://www.investinme.org/ce-projoverview.shtml).
(Bears may be adopted here btw from the campaign's online shop with all profit going direct to Invest in ME Research:
https://shop.spreadshirt.co.uk/ldifme/)

 

[Awol]

The focus on the food continues, though, looking at it, I can't blame anybody (I particularly like the jaunty sole banana on top of the pile of fruit!).

Maybe it's a gut-brain connection ...