3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

under 24 hours is what I think she said.

 

That's interesting!
I haven't been able to watch or read much about the symposium yet, but this caught my eye.

I started taking black seed oil a few years ago, having read it being anti-inflammatory and used for asthma and allergies. It's one of the things I really notice a difference when being without.

It's best to get a high quality oil with specified thymoquinone content, it should taste really strong and "peppery" when you swallow. I've tried some oils that weren't as effective and they tasted much milder.

Now I really must watch Moreau's presentation!

 

Thanks for that great summary @Michiel Tack

I`m excited for the cyclo publication, nanoneedle-development, and the metabolites Davis has found might be very relevant coming from severe patients. The possible treatments Davis has found is also interesting, but I have no idea whats going on there with the impedance stuff.

Personally I`m pretty convinced there is no active virus, but Jonathans remarks on another thread about possible persisting epigenetic shifts (https://www.s4me.info/threads/an-is...-patients-missailidis-et-al-2019.11121/page-2) got me thinking that we might have to take a second look at how e.g EBV might affect ME-patients.

 

This fits a lot of the data, and is one of the things I think many researchers are considering. The miRNA and metabolomic data are both consistent with this, especially considering matches with African Sleeping Sickness and Sepsis. However its looking increasingly likely that some essential changes must be linked to tryptophan metabolism somehow.

 

My guess is that the gut has a significant role to play - we are only beginning to assess its complexity

 

My updated take on the Stanford symposium, With thanks to you @Michiel Tack For a great detailed summary and tweets and @Ben H (and Cort) for tweets

 

Did anyone catch what Jonas Bergquist said about Bragée ME-Center in relation to the ME/CFS Collaborative Research Center in Uppsala, Sweden?

I'm asking because I was very sad to see the names of several BPS proponents in this screenshot of a slide, shared on Twitter



For example Britt Bragée, who is known for her "neurosomatic" approach.

And Gunnar Olsson, who according to the ethical review documents is running or intended to run his ACT study (very similar to PACE style CBT/GET: gradually increased activity regardless of symptoms, changing unhelpful beliefs and fear-avoidance behaviours etc) at Bragée ME-Center. Threads on the ACT study here, here and here.

Olsson has collaborated with several other BPS proponents over the years on several ME projects and studies, for example Rickard Wicksell (who also has published research on functional disorders, which according to them includes ME, together with Per Fink et al), as well as Daniel Maroti and Indre Bileviciute Ljungar of The Mind-Body Syndrome Study, and Martin Jonsjö (thesis: Sickness & behavior in ME/CFS).

Edited to add link to the image source.

 

Isn't this a bit bizarre? Certainly reduced REM sleep will cause issues, but generating PEM from say brushing your teeth?? Has he done sleep tests? This is a bit strange is it not?? My daughter went to a sleep lab. She had shortened REM and lots of micro second wakings. But at that time she did not have PEM non stop. Now, she has PEM non stop now. I am not sure what to make of this hypothesis?

 

I am not terribly optimistic; I heard Dr Moreau in Montreal on a radio programme; he believes this is spectrum condition, with many conditions/or several all co-existing. This is hardly encouraging.

 

Is there a way to rewatch Dr Hanson's keynote speech, Wilhelmina? Thanks!

 

Thank, Simon, to both yourself and @Michiel Tack - will read properly tomorrow.

 

That wasn't the impression he gave at Symposium.. He had identified 5 ME subsets. It seemed that he had alot of work done.

 

I was surprised to find that according to my PEM profile, by his subsets I am in 2 subsets, subset 1 and subset 5.

I had previously noticed this from posts on here but assumed I was misunderstanding.

This would suggest, to my limited understanding, that either I am defective or his work needs work

 

yes, 5 subsets with more than one condition each; spectrum illnesses--whatever that means; he says these subsets will help identify which repurposed drugs will be best; and please note--no one knows what the heck is going on with this illness. This is utterly unacceptable, though I am told normal with complex diseases.

 

He also thinks there will be treatments perhaps in 3 or more years; no talk of a cure at all; the radio programme on CBC can be found; it was utterly discouraging; he talked of fatigue as the core of this illness; I actually called the station and told them to tell the host to stop talking of fatigue.

 

I'd be glad of treatments in 3 years.. Very glad. I don't really expect a cure.. I'm sorry you are disheartened @Perrier. I think we have to just put our trust and hope in the researchers. Try to keep heart.

 

Maureen Hanson's keynote talk is still on Facebook, starting at 57mins

 

I am happy to wait for treatments.

Any time in the next 10 minutes is fine by me - whenever it's convenient.

 

It should be posted on YouTube soon, Nasim. I’ll keep my eyes open.

 

@Perrier i understood it as PEM is causing poor sleep. Not the other way round.