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

Sing said:
Without remembering the exact details and words in that part of the presentation, I think the idea was that if it is a virus, it is a « genius » virus vs a « dunce » virus. They were making a joke as well as a good point, while talking about the different history of our illness vs others like HIV, for which it was easy to discover the cause. With the current technology, she said that a virus like HIV would take almost no time at all to identify—She might have said, « a minute! »
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under 24 hours is what I think she said.
 
Grigor said:
Yes, I'm going to try some of that stuff! Hope I can tolerate it!
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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.
 
Marky said:
possible persisting epigenetic shifts
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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.
 
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 :(

uppsala.png

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.
 
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Rain said:
@NelliePledge

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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?
 
Sunshine3 said:
I was impressed with Alain Moreau's presentation. I missed most of the others but he left me with a feeling of optimism.
I agree @strategist something in the blood needs big focus.
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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.
 
Wilhelmina Jenkins said:
I thought that Dr. Hanson’s talk was absolutely brilliant - one of the best that I have ever heard. Just wanted to point out that, as she said, the low percentage of NIH proposals that are funded is across the board - not just for ME/CFS grants. In fact, ME/CFS proposals are funded at a slightly higher rate than most right now. As she said, the only way around that is set-aside funding like the RFAs that we currently have for the Centers.

If Congress grants that funding, it is likely to be a large amount, but that is going to take time and lots of push from the community. Internally, NIH really hates set-aside funding for a particular disease - any disease. It really prefers proposals coming into a particular NIH Institute, being evaluated, and the best being funded.

Just because they hate it doesn’t mean that set-asides can’t happen. The likeliest area would be funds for new ME/CFS investigators. I would love to see that happen quickly, then push for Congress to allocate serious funding as the research community grows. They are not wrong when they emphasize building the research community.

I was also thrilled about the new Stanford Clinic. One of my concerns has been that research is being done largely on people who have spent years trying medications, which could alter what the researchers are looking at. The new clinic could both provide excellent care and be a source of new PWME who have not been extensively treated.

About the research at the conference, I had my usual opinion. 1) It is so great to see good scientists working together on this difficult problem; and 2) we sure have a long way to go.
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Is there a way to rewatch Dr Hanson's keynote speech, Wilhelmina? Thanks!
 
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 ;)
 
Sunshine3 said:
That wasn't the impression he gave at Symposium.. He had identified 5 ME subsets. It seemed that he had alot of work done.
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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.
 
Sunshine3 said:
That wasn't the impression he gave at Symposium.. He had identified 5 ME subsets. It seemed that he had alot of work done.
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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.
 
Perrier said:
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.
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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.
 
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