• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Invest in ME Conference June 2nd 2017

OverTheHills

OverTheHills

Senior Member
Messages
465
Location
New Zealand
ryan31337 said:
Ugghh, PEM payback today :sleep::sleep::sleep:

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!!
Click to expand...

Ditto thoughts from me about no new discoveries announced. Perhaps with the Colloqium so well established now pre publication stuff gets discussed there instead. Still a great day.

Top marks to Ryan for being so clear and articulate today, I am still Dazed and Confused and have had to write this three times to get it to make sense.
 
ryan31337

ryan31337

Senior Member
Messages
664
Location
South East, England
OverTheHills said:
Top marks to Ryan for being so clear and articulate today, I am still Dazed and Confused and have had to write this three times to get it to make sense.
Click to expand...

Haha, sadly I am in the same boat. I am just quite swift with the edit button!

Its amazing how limited and repetitive my vocabulary becomes with PEM, not to mention the obvious mistakes and zero proof reading ability....
 
Jo Best

Jo Best

Senior Member
Messages
1,032
BurnA said:
Spoke to the lovely Oystein Fluge stand-in, Ingrid Rekeland, who told me a few things about the cyclome trial. She said that breast cancer patients who take cyclo never want to go back to the clinic, but even though ME patients seem to get worse reactions to cyclo they come back looking for more! She confirmed that some rtx non responders do respond to cyclo, but the overall numbers in the trial of rtx non responders are small, so hard to know what this might mean.
Click to expand...
Just for info, if anyone missed it or would like a reminder that Ingrid Rekeland presented along with Oystein Fluge and Kari Sorland, and Simon Carding, at the meeting in Norwich UK in January 2017 and you can jump to the individual talks via links on this page: https://quadram.ac.uk/mecfs-talks-held-in-norwich/
 
Jo Best

Jo Best

Senior Member
Messages
1,032
Gingergrrl said:
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).
Click to expand...
BurnA said:
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.
Click to expand...
Gingergrrl said:
@BurnA Do you know why Dr. Scheibenbogen did not present this year? No worries if you do not know!
Click to expand...
I can't recall if she's published a paper since last year and if not, that may be why she didn't present at the public conference this year, but she did present to fellow researchers the day before (Day 2 of #BRMEC7):
http://investinme.eu/BRMEC Colloquiums.shtml#brmec7
br7.JPG
 
Y

Yogi

Senior Member
Messages
1,132
Thank you to everyone at InvestinME for organising the 12th conference.

:star:This year really appears to be a star studded cast. :star:

Ron Davis, David Tuller, Jennifer Brea @JenB , Ian Gibson, Zaher Nahle @znahle to name just a few!!

WOW!!!!

Thanks everyone!!

For a ME patient it felt like Hollywood Golden Globes! I really wish this year I could be there.

Thanks also to @Jo Best for relaying all the information on IIME conferences for the past years and this year.
 
Y

Ysabelle-S

Highly Vexatious
Messages
524
Yogi said:
In a parallel universe or 2 miles across the city of London at the same time and day this was happening:

https://twitter.com/i/web/status/870759487216418816
Click to expand...

Yes, some of the laughable tweets have been passing on my feed. A right rogues' gallery when I saw Rona Moss Morris tweeting. They are wedded together now, the whole damn lot of them. Locked out of the real science and left to try and shore up each other's careers to clueless audiences who have no idea what has been going on.
 
Last edited:
Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
Jo Best said:
I can't recall if she's published a paper since last year and if not, that may be why she didn't present at the public conference this year, but she did present to fellow researchers the day before (Day 2 of #BRMEC7):
http://investinme.eu/BRMEC Colloquiums.shtml#brmec7
Click to expand...

@JoBest Thank you so much for this link and is there any way that the public (me :D) can find out what was said in her presentation re: the immunoadsorption trial (or was this only for the researchers and not recorded)? Thanks in advance in case anyone knows.
 
hixxy

hixxy

Senior Member
Messages
1,229
Location
Australia
Are there any upcoming blog posts on the conference? Kind of hard to follow things from a bunch of tweets.
 
OverTheHills

OverTheHills

Senior Member
Messages
465
Location
New Zealand
hixxy said:
Are there any upcoming blog posts on the conference? Kind of hard to follow things from a bunch of tweets.
Click to expand...

Yes MeMum and I are. Started on my notes yesterday but of course I was still pretty foggy from the exertion of a whole day of concentration, excitement and socializing. Luckily I am a May/June magic person (see that thread) otherwise I wouldn't have lasted to lunchtime.
 
You must log in or register to reply here.