NIH: Accelerating Research on ME/CFS meeting, 4th and 5th April 2019

[Alvin]

Vicky has replied already, and said that she will take a look at the forum - everybody behave yourselves now!

Certainly not the entire forum
So which threads was she referred to?
I'd submit my chicken/egg NIH thread for review if possible.

 

[Robert 1973]

I haven’t managed to listen to any of the presentations yet but I saw this quote on Twitter.


I have great respect for Maureen Hanson but I’m not sure I agree with her that we know enough about ME to call it “a disease”. Although I despise the term “chronic fatigue syndrome” I’m not convinced that syndrome isn’t a more useful and accurate term than disease at this stage (depending on how it is interpreted). I’m also not aware of any evidence which suggests that ME does not encompass more than one disease or other causes of the symptoms. I’m sure there are sub-sets and it may well be that those subsets have different pathologies.

For interest, this is how Wikipedia defines syndrome:

A syndrome is a set of medical signs and symptoms that are correlated with each other and, often, with a particular disease or disorder.[1] The word derives from the Greek σύνδρομον, meaning "concurrence".[2] In some instances, a syndrome is so closely linked with a pathogenesis or cause that the words syndrome, disease, and disorder end up being used interchangeably for them. This is especially true of inherited syndromes. For example, Down syndrome, Wolf–Hirschhorn syndrome, and Andersen syndrome are disorders with known pathogeneses, so each is more than just a set of signs and symptoms, despite the syndrome nomenclature. In other instances, a syndrome is not specific to only one disease. For example, toxic shock syndromecan be caused by various toxins; premotor syndrome can be caused by various brain lesions; and premenstrual syndrome is not a disease but simply a set of symptoms.

——-

I’m also very interested in the Ron Davis’s nanoneedle paper. P=1x10^-9 seems very impressive. I just hope it’s not too good to be true. Again I’ve not listened to the presentation. Did the study included unhealthy controls – ie controls who are similarly incapacitated but do not have ME?

——-

It wasn't until I watched this video in the embedded tweet that I realised that exosomes are a very new field.

Good video for non-scientists like me – although I see it was posted in 2013. I wonder if exosomology will become a medical specialty.

 

[Hoopoe]

So many questions about exosomes.

If exosomes are transmitting the disease state to other cells, which cells are producing these exosomes?

Why would exosomes carry a signal that impairs energy metabolism? Has anything like this been seen in other illnesses?

Peripheral exosomes are capable of passing the blood brain barrier and activating gial cells. Is it possible that the brain problems are secondary to some peripheral problem?

How difficult is it to make a blood test to detect these particular exosomes?

 

[Hoopoe]

To make a blood test, it seems one would only need some healthy cells, a method to extract exosomes from the blood of patients, and a method to detect whether the healthy cells have their metabolism disrupted when exposed to these exosomes.

We might see a race to develop the first blood test after Ron Davis publishes his exosomes paper.

 

[Ron]

How difficult is it to make a blood test to detect these particular exosomes?

@wigglethemouse
Wiggle, posted an awesome post on the old mother ship. I'm not sure what is allowed here so I will post a link and part of the post and see what fur flies.

Link: https://forums.phoenixrising.me/thr...nce-april-4-5-2019-livestreaming.62919/page-5

Part of post:
Exosome-Total-Isolation-Chip (ExoTIC) Device for Identification of Exosome-based Biomarkers
Researchers at Stanford have developed an inexpensive, rapid and efficient method to isolate a high yield of pure exosomes from a wide range of clinical biofluids. Exosomes are small (30-180nm) cell-derived vesicles that are shed into bodily fluids such as blood, urine and saliva.
http://techfinder.stanford.edu/technologies/S16-048_exosome-total-isolation-chip-exotic

 

[Andy]

She should look at this discussion on OI. It's been brilliant. How about referring her to our top10 threads?!

To my knowledge, we don't have the forum tools to establish which might be the top 10 threads (@Adrian ?). Also, what criteria would we use? Most posts? Most likes?

Certainly not the entire forum

Really? You don't think she'll read every single thread?

So which threads was she referred to?

None, I merely suggested that the forum could be used as a way for researchers and patients to communicate, she said that she would have a look.

I'd submit my chicken/egg NIH thread for review if possible.

I have no idea what thread that is.

 

[tuha]

I didnt follow the conference. Were there any interesting findings from research groups which woul bring us further to understand ME. Is it already sure that mitocondrias are altered by something in the serum?

 

[roller*]

It's also similar to what Ronald Davis reported in his plasma swap experiment - if you put healthy cells in ME/CFS patients' serum, you get a signal on the nanoneedle device. But if you put a ME/CFS cel in healthy serum, there's no signal.

This also suggests there is something in the serum. Davis said they don't think it's a metabolite or cytokine, but probably an exosome.
He also said that it could very well be that the nanoneedle signal reflects changes in the mitochondrial structure.

1) an exosome has some content (transporter, does contain RNA?). what was found ?

2) is it possible to see who the mother ship was ?
perhaps like: exosome identified from liver cells, from the heart, from lymph neck, from parasiteXY ... it should have mother RNA or something like that ?

where did this thing originate ?

bottom line was: "the thing" (assumed exosome) found in mecfs blood only, is disrupting the mitochondria, even healthy ones (???)

 

[roller*]

would be cool to have fact sheets or something like that.

for each conference, with text highlights and vid/research links.
and
for each finding (e.g. nano needle)

i forget things after 5 seconds.., may be not alone

 

[lansbergen]

Is it possible that the brain problems are secondary to some peripheral problem?

I think it is.

 

[Hutan]

Posts on orthostatic intolerance have been split off into a separate thread: Orthostatic intolerance

Please continue the discussion on orthostatic intolerance there.

 

[wigglethemouse]

I know some of us are excited about the possible identification of "something in the blood" but lets remember that in Ron Davis's presentation he said it MAY be exosomes based on an experiment

 

[mariovitali]

I will start by saying that we need technologies to help put the pieces of the puzzle together. ME/CFS shows us its several faces and we need urgently to see where all of this is coming from.


Based on my current understanding, exosomes are a category of extracellular vesicles (EVs). The following figure shows three categories of EVs :


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783904/figure/ijms-17-00170-f001/


So we have ectosomes, exosomes and apoptotic bodies. I ran a text analysis on publications about exosomes :





Many of you know by now that i am very fond of anything related to liver hence the identification of "hepatocytes" among the results. What was also of interest however was autophagy -identified also by machine learning as important research topic- within these results. I find it quite interesting that on the following paper we have mentions of apoptotic bodies as part of the extracellular vesicles (a research topic that is being investigated by Maureen Hanson). I wonder if -apart from the exosomes- mentioned by Ron Davis, apoptotic bodies and/or ectosomes would fit his hypothesis about what is being generated.

Finally, there is a very interesting connection between exosomes and viral replication : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5957004/




As discussed in the beginning of my post, we need to use technology that will help us put these pieces together and this technology is already available for quite some time.

 

[Alvin]

Really? You don't think she'll read every single thread?

Indeed she should, there are only 154,995 posts at the moment, won't take long

None, I merely suggested that the forum could be used as a way for researchers and patients to communicate, she said that she would have a look.

Cool

I have no idea what thread that is.

This thread. They won't like my posts but i explain how to get past the problems if they want to know
https://www.s4me.info/threads/plunging-grant-application-rates-test-nih’s-commitment-to-chronic-fatigue-syndrome-me-cfs.8696/
We could also make a list of recommended threads tailored to what they need to know and convincing arguments and ideas.

 

[Andy]

 

[Andy]

The entire first day is available to stream on demand, https://videocast.nih.gov/launch.asp?27422

No individual talks or timestamps for individual talks available yet.

 

[Sly Saint]

The entire first day is available to stream on demand, https://videocast.nih.gov/launch.asp?27422

No individual talks or timestamps for individual talks available yet.

the transcript (ie captions file) is here:
https://videocast.nih.gov/vodCaptions/niaid040419.txt

 

[Andy]

 

[Hoopoe]

Systrom and Keller's talks are interesting worth watching @Jonathan Edwards

Systrom begins at 4:54

Keller begins at 5:22

https://videocast.nih.gov/summary.asp?Live=31636&bhcp=1

Not the most important thing, but Keller is collecting accelerometer data and lookinat activity data before and after exertion.

 

[Jonathan Edwards]

Thanks, that doesn't load for me - something about the flash plug in. I may need to use another machine.

Maybe if Keller is working with accelerometers she will look at the longer term pattern issue.