Invest in ME Conference June 2nd 2017

[Gingergrrl]

Mending his roof apparently.

Am sorry to hear this and hope he feels better soon!

The conference was a really great experience.

It sounds amazing! Did any of the presenters talk about autoantibodies, or the study done by the Charite, or the lab tests from Cell Trend? (Sorry if I missed it).

 

[BurnA]

It sounds amazing! Did any of the presenters talk about autoantibodies, or the study done by the Charite, or the lab tests from Cell Trend? (Sorry if I missed it)

No mention of charite or cell trend, Carmen Scheibenbogen was not presenting this year.
Autoantibodies in general were mentioned but I don't think in any great detail other than being likely if rtx is beneficial.

 

[BurnA]

A few more memories from today while I remember them.

Warren Tate gave a good talk where he mentioned his daughter has had ME for about 25 years. Her best year in terms of remission was when she got pregnant

This prompted me to ask if pregnancy is an area worth exploring, only I had to ask about 10 times before he understood me. He was polite enough to suggest it was the microphone but I have a feeling it was my accent. #embarrassing
I hope they edit that out of the video.

Then Ron wanted to know how to make his son pregnant

Lily Chu approached me after the conference to tell me this topic was part of a study she was involved with, she couldn't tell me too much but she will be presenting her paper later this year.

 

[Gingergrrl]

No mention of charite or cell trend, Carmen Scheibenbogen was not presenting this year. Autoantibodies in general were mentioned but I don't think in any great detail other than being likely if rtx is beneficial.

@BurnA Do you know why Dr. Scheibenbogen did not present this year? No worries if you do not know! Also, did you get the sense that autoantibodies are not really a hot topic (outside of the Rituximab research)? Am curious if autoantibodies are viewed by the researchers as a separate autoimmune disease vs. still possibly a sub-set of ME/CFS?

 

[Kati]

Hi @BurnA I asked the question on twitter, when PR twitter poster mentioned canadian research- do you know what this was about? Do you know if there were canadian delegates in the room?

 

[Jesse2233]

@BurnA Do you know why Dr. Scheibenbogen did not present this year? No worries if you do not know! Also, did you get the sense that autoantibodies are not really a hot topic (outside of the Rituximab research)? Am curious if autoantibodies are viewed by the researchers as a separate autoimmune disease vs. still possibly a sub-set of ME/CFS?

Given what Mella said about the CycloME response rate, it sounds like they're still very much in play

 

[BurnA]

@BurnA Do you know why Dr. Scheibenbogen did not present this year? No worries if you do not know! Also, did you get the sense that autoantibodies are not really a hot topic (outside of the Rituximab research)? Am curious if autoantibodies are viewed by the researchers as a separate autoimmune disease vs. still possibly a sub-set of ME/CFS?

No I don't know why Dr Scheibenbogen did not present, I guess they have to mix it up a bit too.

I think the researchers are careful not to speculate too much so while they acknowledge autoantibodies are a likely or possible candidate they don't want to or can't get into too much detail because they just don't know.

I wouldn't say they view ' autoantibodies ' as a seperate disease, they definitely acknowledge ME could be autoantibody driven. It varies from researcher to researcher though. Put it this way, I didn't get any sense that they definitely don't think it's autoantibody driven.

 

[BurnA]

Hi @BurnA I asked the question on twitter, when PR twitter poster mentioned canadian research- do you know what this was about? Do you know if there were canadian delegates in the room?

I tweeted that with you and all our Canadian members in mind.

Sorry I couldn't keep up with twitter replies etc.

I didnt get the sense there were any Canadian researchers in the room, there could have been but no mention if there were.

It was relating to Vickey Whittemores speech, she said they (NIH) were trying to foster international discussion and mentioned Canadian institute of Health research. But that was it really, a fairly brief mention but still it got a mention on her slides so must be relatively important

Sorry I don't have more but I am sure she might provide more details if you asked her.

 

[Murph]

If the cells became normal, does that mean this is a potential cure? This new technology and its capabilities are new to me. Fascinating!

This is Ron's electrical impedance device, right? It's a proxy for normal cell functioning but we're not yet sure how the electrical impedance measurements at the cellular level correlate with the disease, its symptoms or severity, nor are we yet sure whether the drugs that normalise electrical impedance at the cellular level will be effective or tolerated at a human level.

As I understand it the electrical impedance device is good as a cellular model that shows something is wrong, and illustrates potential disease mechanisms, but far from a surefire way to find cures.

 

[Gingergrrl]

No I don't know why Dr Scheibenbogen did not present, I guess they have to mix it up a bit too.

Thanks and I had thought she might present her study that used plasmapheresis/immunoadsorption and IVIG (unless she did last year and I have lost all track of time LOL)?

Put it this way, I didn't get any sense that they definitely don't think it's autoantibody driven.

Thanks and that makes sense.

 

[Kati]

I tweeted that with you and all our Canadian members in mind.

Sorry I couldn't keep up with twitter replies etc.

I didnt get the sense there were any Canadian researchers in the room, there could have been but no mention if there were.

It was relating to Vickey Whittemores speech, she said they (NIH) were trying to foster international discussion and mentioned Canadian institute of Health research. But that was it really, a fairly brief mention but still it got a mention on her slides so must be relatively important

Sorry I don't have more but I am sure she might provide more details if you asked her.

Thank you, much appreciated. Canadian Health minister mentioned international collaboration in letters to patients but at this point, we do not know what kind of collaboration and whether they are doing so with the wrong crowd or the right crowd. They also only sent a sociologist at IACFSME and likely no one at the London conference. Talk about committment! (Not)

 

[Jo Best]

Thank you, much appreciated. CAnadian Health minister mentioned international collaboration in letters to patients but at this point, we do not know what kind of collaboration and whether they are doing so with the wrong crowd ormtye right crowd. They also only sent a sociologist at IACFSME and likely no one at the London conference. Talk about committment! (Not)

Invest in ME Research invited the Canadian Minister for Health and the Canadian National Research Council (and the Dutch Health Council) and although they didn't send representatives to the London conference events the contacts have been made and as US NIH and CDC and Norwegian Health Directorate were involved this year maybe that's linked to the international collaboration mentioned by the Canadian Health Minister (just speculating).
ETA, as my brain missed this reply...

It was relating to Vickey Whittemores speech, she said they (NIH) were trying to foster international discussion and mentioned Canadian institute of Health research. But that was it really, a fairly brief mention but still it got a mention on her slides so must be relatively important

Sorry I don't have more but I am sure she might provide more details if you asked her.

 

[Ysabelle-S]

Live tweeted today from the conference. Read from the bottom of each of these screenshots.

 

[Ysabelle-S]

 

[Ysabelle-S]

 

[Ysabelle-S]

 

[Ysabelle-S]

 

[Ysabelle-S]

 

[Ysabelle-S]

The last set of tweets. Well done to her for live tweeting all that. It's not easy.

 

[ryan31337]

Ugghh, PEM payback today

Just wanted to drop by and say for those with understandable FOMO, you shouldn't worry. It was a great conference but unless I missed something there weren't any major discoveries discussed that we haven't already covered here in recent months - which is a testament to how good these forums are I think!!