USA: Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

Interesting. I don't follow them on Twitter but am used to seeing their tweets as plenty of people I do follow end up retweeting or responding to tweets so they end up in my feed. Just seemed a bit odd that a meeting with those people would take place with virtually no discussion--nobody even responded to their tweet. Surprised there wasn't any sort of feedback whatsoever, considering the size and rep of the crew involved.

 

Code:

https://www.facebook.com/CfSforMECFS/posts/592732404585521

 

Code:

https://youtu.be/JAViJJIbSjk

https://www.youtube.com/watch?v=JAViJJIbSjk

 

Interesting. I didn't understand when Neil McGregor said at the Australian conference that US metabolomic data was relative which made comparison with his data difficult.

I'm going to have to watch the video again but if I understand right, in the US a NIST sample standard is used so results are relative to that. Oliver Fiehn stated that they are developing and using other tools that allow absolute measurements to be compared across studies.

 

Oliver Fiehn states that there is a central website for storing metabolomic data from studies (blood, tissue, all species). At present there are 994 studies posted.
https://www.metabolomicsworkbench.org/

You can search for Human=> Blood => Chronic Fatigue Syndrome here
https://www.metabolomicsworkbench.org/data/metsearch_MS_form2.php

This brings up studies from Robert Naviaux (2 datasets) and Oliver Fiehn/Ian Lipkin (4 datasets) for those interested in raw data number crunching.

ETA: If you leave the sample source blank and search Human => <Blank> => Chronic Fatigue Syndrome there are also three datasets for CSF fluid from Fiehn/Lipkin. Does anyone know if this study of CSF has been published?

ETA2: FYI - Raw data for CSF fluid is 6G + 4.5G + 0.5G.

 

ME/CFS Q&A – What do you think are the most promising lines of ME/CFS research right now?

Copy and paste

Code:

https://youtu.be/5RljQXX1FCY

https://www.youtube.com/watch?v=5RljQXX1FCY

 

It's interesting that Dr. Komaroff now seems to be allied with Columbia's Center for Solutions. I wonder if this is a recent development.


P.S.

I have to admire a man with the 5 Platonic solids on his desk (though this may not be his desk). I used to have an icosahedron on mine.

 

Strangely, I suppose, most things associated with Columbia U leave me a bit frightened.

 

That desk definitely looked staged. I'm sure nobody actually works at it like that. Microscope and glass flasks?!

 

Using the medicine subreddit to observe attitudes towards ME/CFS, I think there has been a shift. The JAMA article by Komaroff in particular seemed to make a particularly big impact. This video is good too: easy to understand without going into technical details or controversy, with a positive message. We need this kind of PR to undo some of the negative attitudes towards ME/CFS.

There should alsways be room to discuss controversies and technicalities but the average person really just needs to hear that views towards ME/CFS are changing, that it's real and that we're beginning to discover its associated biology and that it's a problem that should be taken seriously.

 

Yay for a positive reply!! I thought he came across well, I really think we have to appreciate any pluses that come along.

 

There is a Mac behind him on another desk but yes, definitely staged.

I’m also unsure about some of his claims, but I agree it’s a plus that he seems to reach some people who have been very reticent to believe that there’s anything real to ME/CFS.

 

It did? I usually avoid this sub, it's so damn depressing how hateful it can be towards us.

Baby steps...

 

This guy Professor -- has been praised by Cort Johnson for his superb communication skills.

My impression was there wasn't much substance (e.g. new science) but it was interesting. Re gene activation --- I recall Wenzhong Xiao presenting data which showed that gene activation in ME most closely resembled SEPSIS; also, some of the post viral/bacterial theories rely on gene activation -I recall a significant publication a few (2?) years ago which showed one virus, associated with ME (Epstein Barr virus?), had the ability to activate a significant number of gene's.

So interesting but too superficial --- different target audience to you folks though.

 

Yeah, it's clearly something they set up for the video. It's almost identical to what was used in the last video that they posted.

 

I'd guess it's just part of a Columbia U.|Mailman School of Public Health media facility. It does seem kind of... "claustrophobic."

...and a bit "Rocky Horror."

 

I wonder if there is a condition, in the NIH award, that they need to engage the public--- in the best traditions of a box ticking exercise -- here's the evidence (box ticked)!

 

Almost 2 years on since the 3 year grants were awarded.