13th Invest in ME Research International ME Conference - 1st June 2018

As in the parasite linked to African sleeping sickness? What was the link? *curious*

 

Any politicians attending? What happened with Jeremy Corbyn?

ETA: Any journalists?

 

He had to pull out a while back.

 

The idea of a metabolic trap is intriguing, is there any illnesses were this is happening?

 

OK, so now people are tweeting!

Quite a few new messages with info about the presentations - might be interesting. Too many for me to post.

https://twitter.com/hashtag/iimec13?f=tweets&vertical=default&src=hash

 

This is interesting - click it to see the whole thread:

https://twitter.com/user/status/1002619879277629441

 

Emma Joy doing a great job tweeting good stuff now (clearly listening too carefully at the time to tweet, which makes perfect sense!):

https://twitter.com/user/status/1002640136805535744

 

https://twitter.com/user/status/1002642724854657030

 

Can someone clever post Emma's whole thread on that FMT thing? I'm no good with Twitter.

 

https://twitter.com/user/status/1002648250074193920

https://twitter.com/user/status/1002649205314375682


She's still going but I have to stop! I recommend looking at her Twitter feed: https://twitter.com/emmajoy6

 

I was sitting beside Emma, she didn't stop writing notes all day, I don't know how she kept up.

 

Yes.
I can't remember all the details, so this could be technically nonsense.
But they compared / profiled ME to something like 83,000 different "illnesses" and the most comparable was trypanosome infection or African sleeping sickness. I think it was some form of genetic profile but I could be mistaken.

Interesting for a number of reasons :
The symptoms are very similar.
Suramin is used for African sleeping sickness.
The west African variety is easily detectable but the east African version is very difficult to detect. Ron even speculated that we could all have an undetectable trypanosome infection.

It was interesting but like a lot of things I am not sure where it might lead if anywhere. I think they were trying to find similar illness to see if they could learn something. Sorry my brain is fried now.

 

I'd agree with the "interesting but not much new" assessment.

Think they used gene expression?

Yup, me too, the coffee wore of quite some time ago.

 

Should I be expecting the NIH study to finish after 2021?

 

Very interesting, I’m sure we’ll get more details from OMF/Ron later if it continues to be so

From what I can skim through trypanosomiasis have similarities to ME in several of its forms. I think I have even talked to a PwME who turned out to have Chagas, or read about it... hm. There are of course some notable differences as well, but the idea that we might share some genetic predisposition is intriguing. After all, if we have one (or several) they can’t be very rare or we wouldn’t have epidemics. I find it harder to believe we all have a trypanosoma infection, but who knows!

 

But don't you have to go to Africa to get it?

 

Just to expand on the good summary from @BurnA, Ron suggested 2x theories on the similarities:

1 - We might have undetected trypanosome type infection causing our symptoms

2 - Existing recognised trypanosome infection is actually just causing ME/CFS too

But this was all just conjecture and not to be taken too seriously I think...

 

His lecture left me feeling like I'd been on a rollercoaster, it was rushed but an otherwise well rehearsed summary & evolution of 20+ years work.

I had little awareness of his research, having focused a lot more on the clinical allergy side of MCAS from Afrin and others previously.

It was interesting to see that he had formed some clearer ideas on wider mast cell impact and involvement in disease, quite separate to the allergy type issues.

He did say at the start that the lecture would be available online after a week or so - presumably he got special dispensation to do so?

Edit: just to add I think it was the somewhat bold claim from this lecture that ME/CFS is largely due to activation of hypothalamic mast cells, which cause local neuroinflammation & stimulate the HPA axis.

 

A new interesting snippet:

https://twitter.com/user/status/1002658306702364673