UK: Invest in ME Conference 2023

"The 15th Invest in ME Research International ME Conference 2023 - IIMEC15 - will take place on 2nd June 2023.

15 international conferences, interrupted only by the covid pandemic, welcoming researchers, clinicians, patients and carers from around the world.

This year we will revert back to an in-person meeting.

It has been four years since we held our last public conference and researchers, clinicians and patients and carers have not had much opportunity to listen to the latest research and clinical developments.

With developments around research into Long Covid and with the similarities of some symptoms to those experienced by people with ME then this topic will be also included as a central component of the agenda.

Updates on research into ME from around the world will also be given - as well as input from the previous two days of the BRMEC12 closed researchers Colloquium."

https://www.investinme.org/IIMEC15.shtml


*****
Discussion about specific presentations also here:
David Systrom, researcher, Brigham and Women's Hospital, USA
IIMEC 2023: Maureen Hanson
2023 IIMEC15 - Alain Moreau

 

EMRGecr (European ME Research Group early career researchers) Workshop/conference 2nd June 2023

"To (re)initiate the network we have arranged a new young/ecr workshop to take place on 2nd June 2023 at the Wellcome Genome Campus near Cambridge, UK, in parallel with the 15th International ME Conference."

https://www.investinme.org/emergecr-workshop202306uk.shtml

and

12th International Biomedical Research into ME Colloquium, 31 May - 1 June 2023

"The colloquium bring togethers international scientists and clinicians working on, or interested in, myalgic encephalomyelitis (ME or sometimes referred to as ME/CFS) and will again advance research into the disease by facilitating the sharing of knowledge and collaboration between researchers from around the world. The Colloquium will revert to an in-person meeting this year."

https://www.investinme.org/BRMEC12.shtml

 

Anyone going to this meeting?

 

Some live tweeting but not informative

https://twitter.com/user/status/1663907252288249857

 

FYI This person is live-tweeting the conference.

 

Tweets (by Tess Falor) have been posted on a private FB page.

Lots of info already up. Several talks already tweeted.

From the series of tweets under the tweet above, it seems as if Tess flew in yesterday with Isabel Ramirez with a plan to post the tweets. She thanks the community for making it possible for them to attend.

?ME patients from ?US representing ME community

They aren't allowed to record but Invest in ME will and post it on their website.

 

Ron Davis believes that 25% of ME patients have multiple sclerosis.

https://twitter.com/user/status/1664675861486813184

 

Thanks to this place I actually understand about 30% she's talking about. She does very well at setting it out too.

 

Check out Jonathan's comments re use of rituximab in MS. If rituximab works in MS then how come the Norwegian ME (rituximab) phase 3 trial didn't have cases which responded +ve?

Not suggesting there may not be something interesting, but my initial reaction is --- are MS diagnostic tests that poor i.e. they miss cases? -- did Nath find a lot of misdiagnosed ME/MS?

I'm hoping that the outcome of UK GWAS (DecodeME), and other GWAS studies, will provide reliable clues to focus research on.

EDIT - for anyone who has MS, but is currently undiagnosed (due to ME misdiagnosis), then it could be good news (of sorts) e.g. there are treatments like rituximab for MS.

 

"Speakers at IIMEC15

Vicky Whittemore
NIH

---

Avindra Nath
NIH"

*"I'm assuming that Vicky Whittemore's plans will be set out in the forthcoming NIH talks - separate thread - similarly we should get an idea what Nath's found etc. via submitted publications."

 

Strategist - Ron's been funded (NIH) to do genetic sequencing in ME/CFS - KIR and HLA genes*; grant finished this month. "Combinations of KIR and HLA genes have been associated with various autoimmune diseases, and with viral infections."*
So Ron may/should be able to cross check any statement re multiple sclerosis/autoimmunity with that study ---?
Which brings me back to --- when will the results of that (NIH funded) study be published ---?

https://www.s4me.info/threads/ron-d...-single-cell-immunology-in-me-cfs.4758/page-2

 

Do patients have MS or #MECFS? Myelin Basic Protein (MBP) digest by catalytic antibiotics from ME and HC It appears that about 25% of patients have both


This is unintelligible to me. it is a pity that we are not getting more useful information about the conference.

 

"catalytic antibiotics" is a typo. It was antibodies.

Very good. If I remember right he also said during the conference that they found variants in non-coding regions of the DNA that increased the risk of ME/CFS.

Most genetics research into ME/CFS has presumably focused on the coding regions due to cost being so high for whole genome sequencing until relatively recently. Maybe the non-coding regions have some answers.

 

That is still unintelligible I am afraid.

 

I realise that an annual conference/colloquium is part of what IIME is set up to do but I do wonder whether it's a model that's past its usefulness. Bringing seven American, one Canadian and four European based researchers to the UK just so they can talk to each other in front of a small audience seems a poor use of resources when the opportunities for remote communications are now so varied and offer better options for broader involvement. And the presence of just a single UK researcher on the panel seems odd to say the least. I guess IIME members get something from it but for a Health Charity it does seem a bit of a 'clubby' way of organising things.

 

Fair point and interesting observation.