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.
 
ME/CFS Q&A with Dr. Oliver Fiehn – Part 1

The Center for Solutions for ME/CFS at Columbia University presents the "Ask Our Researchers – Video Q&A Series", in which the center's scientists and clinicians answer questions from the ME/CFS community.
Click to expand...
Code: 
https://youtu.be/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?
....we pursued metabolomics analysis of cerebrospinal fluid (CSF) in 32 ME/CFS cases, 40 subjects with multiple sclerosis (MS), another fatiguing illness, and 19 healthy subjects with no neurological disease (ND). MS/ND subjects were frequency matched for age and sex to ME/CFS subjects.

Three untargeted metabolomic assays for primary metabolites, biogenic amines and complex lipids were performed with gas chromatography time-of-flight (GC-TOF) and liquid chromatography–tandem mass spectrometry (LC-MS/MS) yielding profiles for 525 known metabolites.
Click to expand...

Mannose was a cardinal biomarker in ME/CFS subjects with reduced levels in ME/CFS compared to both MS and ND subjects.

Levels of acetylcarnitine were reduced in ME/CFS vs. MS subjects.

The predictive power of metabolomic analysis for diagnosis of ME/CFS vs. ND was higher (cross-validated AUC 0.875; 95% CI: 0.726~0.949) than with cytokine analysis alone (cross-validated AUC 0.865; 95% CI: 0.673~0.952) and improved with integration of both metabolomics and cytokine analyses (cross-validated AUC 0.916; 95% CI: 0.791~0.969). Our findings confirm the biological basis of ME/CFS, and may enable new methods for diagnosis and insight into cognitive and autonomic disturbances in this syndrome.
Click to expand...

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

Platonic Solids.jpg
 
Last edited:
I saw someone posted that one of the main US medical websites (can’t remember which) that still refers to CBT/GET as a treatment him as the reviewer of the ME/CFS content. And it has been drawn to his attention. Would have thought that leaders in the field (as ME pedia describes him) should be taking a lead on weeding that BS out now PACE has been debunked and removed from CDC.
 
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.
 
strategist said:
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
Click to expand...
Yay for a positive reply!! I thought he came across well, I really think we have to appreciate any pluses that come along.
 
Trish said:
I agree, it struck me immediately as a stage set that said 'I'm a scientist'. No one works with that stuff cluttering up their desk space. Odd that there was no computer.
Click to expand...

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.
 
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.
 
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." :)

hqdefault.jpg
 
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)!
 
You must log in or register to reply here.
Back
Top