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

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.

To my knowledge, this is the first study on metabolites in the csf. I believe it's yet unpublished work. It's not clear how differentiated mannose was from controls, but it would be great to finally have something really out of whack. I have no idea what low mannose could mean.
 
Today we are hosting the second annual ME/CFS Consortium Meeting in #NYC. Looking forward to hearing from our Collaborating Research Centers presenting new findings in #MECFS research.

We are grateful to be joined by members from the following organizations for this event: National Institutes of Health (NIH)The #MEAction Network USA Solve MECFS Initiative and The Microbe Discovery Project. Stay tuned for updates #CenterforSolutions
Code:
https://www.facebook.com/CfSforMECFS/posts/671748796683881

 
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.
I can't stomach looking at that subreddit. They have pretty awful attitudes toward pwME
 
We have a holiday treat for our friends in the #MECFS community: To start off 2020 on a high note, we are excited to announce that Dr. Lipkin will be recording his #AskOurResearchers video. Comment on this post with questions that you would like to have Dr. Lipkin address and stay tuned for a special opportunity to be announced before the holidays.

View Dr. Lipkin's holiday message here:
Code:
https://www.facebook.com/CfSforMECFS/videos/427861854759469/



 


eta: new link


CDC

"Columbia University’s Ian Lipkin, MD, visited the CDC in September 2019 to present a special seminar hosted by the Division of High Consequence Pathogens and Pathology’s Chronic Viral Diseases Branch. The presentation covers his work on discovery of unknown pathogens and parallels between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and infectious disease and his current, and future ME/CFS research. Comments on this video are allowed in accordance with our comment policy: http://www.cdc.gov/SocialMedia/Tools/... "
 
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Recently the Lipkin team completed a proteomics pilot study. Small study, but well matched patients from multiple sites.

They found increase or decrease of particular proteins was associated with ME/CFS.

They think ME/CFS may be a final state reachable through multiple different paths (as for example cancer).

They found immunoglobulins associated wit ME/CFS with good odd ratios (all >3).

Immunoglobulin kapp and heavy and light chains which are present at increased concentrations. Findings are consistent with clonal expansion of B cells to specific immunogens.

They're also doing plasma metabolomics (not going to list all the findings).

One of the findings were plasmalogens, which are found in particular in the brain. Known to be altered in alzheimer's disease, so this may be some marker of CNS dysfunction.

Epigenetics pilot study. He says findings are interesting and one of the most promising data. I didn't quite understand it but there appears to be a particular pattern of methylation. Many methylation and expression changes are related to oxidative metabolism as well as stress.

One of areas of interest that emerges from the findings is iron uptake and homeostasis. Various genes, taken individually are not very different, but if taken together they could have a profound effect.

He speculates that there might be a process occurring that is similar to anemia of chronic disease.

Says 2-5% of patients coming into their clinics have evidence of persistent herpesvirus infections.

Talks about a new proteomics study using a chip that can measure the whole human proteome, and stuff associated with herpesviruses and tick borne diseases.

They haven't found the cause but will continue looking at immune history. High throughput sequencing hasn't found any one infectious agent.

He finishes the talk highlighting that this is "a bona fide illness" and a serious problem for society.

There were questions from the audience.
 
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He also said on the topic of herpesviruses, that some clinics have a lot more of these cases than others.

My thoughts follow:

Presumably due to regional differences and what I think is called referral patterns. Anyway according to the data presented herpes viruses appear to be a problem for some patients, but not for most. He seems interested in the topic and wants to explore it further.
 
In the Q&A Lipkin made a point to state that the NIH funded research centers only received 15-20% of the funding they were promised. This means they can only do small discovery studies.

Talks about a new proteomics study using a chip that can measure the whole human proteome, and stuff associated with herpesviruses and tick borne diseases.
This chip looks very interesting. It's based on a previous chip that costs $3,500 but they reconfigured it for ME/CFS and reduced the size to lower the cost, but still very expensive. Currently have 40 patient and control samples collected, want to get to 50 before starting the work.

Lipkin doubts that the pathogen answer will be found with sequencing as they have already looked quite deep that way. That's why looking at the patient samples in response to pathogens and using methods like the chip are the way to go.

Nice to see good collaboration too. Unumatz at Jackson Laboratories, another NIH funded ME research center, has found a subgroup of patients with a specific immune type. Lipkin will analyse this soubgroup of samples to see what else they have in common.
 
A couple of quotes I found particularly interesting... [bolding mine]

Speaking about the microbiome:
And if we look at the Venn diagram showing what comes up as being common, we find that there are 15 different bacterial types that are highly represented. You can see Ruminococcus, Clostridius species, and why is this important?

Well, the Clostridius species are associated with inflammatory bowel disease, and mucous degradation and so forth, and then you also have these butyrate producers that are reduced.

If you have inflammation of the enteric mucosa, you have the opportunity for trafficking of molecules produced by bacteria into the systemic circulation where they can then have an impact. So that is one thing that we're now pursuing and we do that by using metabolomics.



And...
All the things that we've done thus far provide biological evidence that this is a bonified illness; with cytokine, metabolomic, proteomic, epigenetic, transcriptomic differences, all consistent with some sort of an abnormal immune response, oxidative stress, and a dysregulated microbiome.

So we've come a long way.
 
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I didn't completely follow this, but he mentioned herpes viruses a couple of times.
Now in our experience, 2-5% of the patients who come through our research clinics wind up having some evidence of persistent herpes virus infections. Some clinics have more than others. Jose Montoya at Stanford had large numbers of those. (Dr.) Peterson has them as well.


Later when talking about an expensive sequencing test he mentions:
...we have the reference proteomes of all known herpes viruses, because we're concerned that they may be associated with persistent infection.


Later still, when talking about developing animal models to test, he says:
What I'd like to do first is look at the impact of herpes virus infections on different cells in vitro, and ask whether or not they're associated with differential methylation in specific genes, for example. And this is something which I think we can do, you know, we can do any time, and then we can begin looking at specific animal models.

I could have this wrong, but it sounds like the persistence of herpes viruses may be related to their triggering the methylation (suppression) of certain host genes which might otherwise work to eliminate these viruses. They may be looking to see if this method of persistence might be related in some way to the persistence of ME/CFS. [Just my guess based on what he said.]
 
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Lipkin doubts that the pathogen answer will be found with sequencing as they have already looked quite deep that way.

When I asked Prof Lipkin whether his sequencing technique on blood samples would be able to detect enterovirus infections in the tissues, he said no it would not. So for any enteroviruses (and possibly other viruses) infecting the tissues of ME/CFS patients, sequencing is blind to such infections.

EDIT: unless you perform the sequencing on the tissues themselves.
 
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