Columbia Researchers Report They Can Predict 84% Confidence Level Testing

[Dakota15]

I know I just posted this note in another thread, but thought this could deserve it's own thread for thoughts or commentary as well.

Below is an article published yesterday (7/09/18) regarding a research update with researchers at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health. This note in the first paragraph was particularly interesting to me:

"A study led by researchers at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health has identified a constellation of metabolites related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Combining this data with data from an earlier microbiome study, the researchers now report they can predict whether or not someone has the disorder with a confidence of 84 percent."

https://www.sciencedaily.com/releases/2018/07/180709120146.htm

I know it's still very preliminary but thought it was worth passing along - feel free to share any thoughts or such.

Cheers

 

[Wally]

@Dakota15 - Since this is a newsworthy ME/CFS topic, it might get more eyes to view the post, if it shows up in the Forum under the News Section - Latest ME/CFS Research. (See, https://forums.phoenixrising.me/index.php?forums/news-and-research.103/). Perhaps one of the moderators (@Sushi) might have a suggestion on where a topic (or even the wording of a title for a post) would get the most exposure for viewing?

 

[ljimbo423]

Thanks for posting Dakota15!

From the article-

On the Horizon

Going forward, the researchers say their data could be used to engineer an animal model for ME/CFS to manifest the same altered metabolome and microbiome.

If the animal's behavior is similar to symptoms seen in ME/CFS patients, they would know the metabolic and microbiome are likely playing a causal role in the manifestation of disease.

An animal model would also allow researchers to test treatments. Currently, there are no approved therapies for ME/CFS.

"We're closing in on understanding how this disease works," says W. Ian Lipkin, MD, director of CII and the NIH Center for Solutions for ME/CFS

Good stuff!

Jim

 

[Gijs]

For me animal models in ME/CFS is a red flag! How do you know what an animal feels or think?

 

[Neunistiva]

I am very disappointed they want to develop an animal model.

Yet another thing that will drain all the research money, produce no results and slow down research for decades.

What are they thinking!?

Why is Dr. Lipkin not doing what other researchers are doing, trying to repurpose already existing FDA-approved drugs?

Animal trials for drugs slow things down by decades, increase the costs by hundreds of millions of dollars, don't translate well to humans, and don't actually improve safety at all.

For example, in an article that lists all the issues of using animal models, among other things it says:

the reason fialuridine is toxic to humans is because we have a unique transporter molecule deep in our cells that allows the drug to penetrate and disrupt our mitochondria, causing cell death. This transporter is not present in any of the five test animal species, so the drug did not affect their mitochondria.​

For an illness as complex as ME/CFS chances that it will translate from other animals to humans seem close to zero. We don't even get the same results in humans for women and men!

In a recent article talking about new ME/CFS Research Center at Harvard Cort reported that

Despite billions of dollars and over 100 clinical trials, not a single drug has been produced that can successfully treat sepsis. ​

And the reason?

the mouse model investigators had relied on for decades to understand sepsis was shown to be almost completely faulty. A central conclusion of the Glue Grant project was that to understand sepsis in humans you’re going to have to study humans – which is just what this project did.​

We are plenty desperate and willing to risk it, and we are all of sound mind. Why not let us take part in human trials?

 

[Wally]

Set forth below are the links to the two studies that are mentioned in this press release, where the data was combined and found by the researchers to allow them “to predict whether or not someone has the disorder [ME/CFS] with a confidence of 84 percent.” The first author of this study is quoted as stating “this is a strong predictive model that suggests we’re getting close to the point where we’ll have lab tests that will allow us to say with a high level of certainty who has this disorder”. See, Columbia University Press Release and quote from Dr. Ian Lipkin at https://www.mailman.columbia.edu/pu...s-get-us-closer-test-chronic-fatigue-syndrome

1) 2018 Metabolome Study - https://www.nature.com/articles/s41598-018-28477-9#ref-link-section-d3618e3895
2) 2017 Fecal Microbiome Study - https://microbiomejournal.biomedcentral.com/articles/10.1186/s40168-017-0261-y (Columbia Mailman news release for this study - https://www.mailman.columbia.edu/pu...fatigue-syndrome-linked-imbalanced-microbiome )

 

[sar88]

I know I just posted this note in another thread, but thought this could deserve it's own thread for thoughts or commentary as well.

Below is an article published yesterday (7/09/18) regarding a research update with researchers at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health. This note in the first paragraph was particularly interesting to me:

"A study led by researchers at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health has identified a constellation of metabolites related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Combining this data with data from an earlier microbiome study, the researchers now report they can predict whether or not someone has the disorder with a confidence of 84 percent."

https://www.sciencedaily.com/releases/2018/07/180709120146.htm

I know it's still very preliminary but thought it was worth passing along - feel free to share any thoughts or such.

Cheers

This research confirms a lot of my own research. I am so pumped about someone like Dr. Lipkin who is suuper aggressive and competitive being on board with ME research!
Do You know which clinicians Columbia is collaborating with for their research samples? Is it Just Dr. Levine?

 

[sar88]

For those of you who are not on linkedIn or not connected with Dr. Lipkin on LinkedIn, Here is what he shared the other day.

Some promising news for the #MECFS community. In our most recent Nature Research (Publishing) manuscript, we explain findings that could provide insights into the pathogensis of ME/CFS and its subtypes. It could be a solid stepping stone to possible pathways for the development of diagnostic and therapeutic strategies: https://lnkd.in/gmdZ4-A

A study led by researchers at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health has identified a constellation of metabolites related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Combining this data with data from an earlier microbiome study, the researchers now report they can predict whether or not someone has the disorder with a confidence of 84 percent.

We're closing in on understanding how this disease works," says W. Ian Lipkin, MD, director of CII and the NIH Center for Solutions for ME/CFS, and the John Snow Professor of Epidemiology at the Mailman School. "We're getting close to the point where we can develop animal models that will allow us to test various hypotheses, as well as potential therapies. For instance, some patients might benefit from probiotics to retune their gastrointestinal microflora or drugs that activate certain neurotransmitter systems."


Will someone please tell me who Lipkin and his team are getting the research samples from? Is it only Dr. Susan Levin because I really want to provide samples to be part of research before trying any treatment. Dr. Levine did personally tell me that her average age for patients she is providing samples from is between 45-50. You would think I would be able to get into one more easily considering I can add some diversity at 30!?

 

[Tally]

I am so pumped about someone like Dr. Lipkin who is suuper aggressive and competitive being on board with ME research!

Dr. Lipkin has been working on ME research for almost a decade now

 

[Dakota15]

@sar88 sorry I don't know who all contributed to the study...you can check out this more detailed article below if you want to comb through.

https://www.nature.com/articles/s41598-018-28477-9

I'm not implying to bombard Dr. Lipkin with emails, but have you tried reaching out to him and asking him if you can't find the answer? I only ask this route because he's been very gracious enough to email with me occasionally - something I've seen with a fair amount of CFS/ME researchers that are willing to be that accessible with patients reaching out.

Just an option if the other avenues aren't fruitful.

 

[Wally]

@sar88 - In the microbiome and metabolome studies, the samples for ME/CFS patients came from Dr. Peterson, Dr. Bateman, Dr. Klimas and Dr. Levine. There were 50 patient samples. The studies do not say how many samples came from each clinic. Best guess is they were divided equally(?) between these 4 sites, but you would need to ask that specific question to Lipkin or one of these doctors. The information as to where the samples came from is set forth in each study. The link to each of the studies is posted in reply #6 above.

(Note - I believe that Dr. Montoya was originally one of the physicians/sites that was suppose to supply samples. If his samples would have been included, then there would have been 5 sites contributing a total of 50 samples or 10 samples per site. It would be interesting to know why Montoya’s samples were not used. Especially in light of the fact that the “pathogen study” that he and Lipkin were involved in reported 85% of the patient samples as showing some type of retrovirus, but Lipkin did not feel that this should be pursued (at least at that time).

It is also not clear from the information in the microbiome and metabolome studies, if the samples were from the same group of samples used in the multi-site XMRV replication study. It is my understanding that Dr. Montoya’s samples were also to be used in that study, but they were eventually excluded along with a long list of other exclusions that included excluding patient samples such as those with underlying thyroid conditions. A lingering question has remained about whether or not the list of exclusions took out too many ME/CFS patients who may represent a strong contingent of people with this illness. It is thought that the thyroid could be one of the compartments where a pathogen may reside. The number of ME/CFS patients with underlying thyroid conditions is thought to be well over 50% and as high as 80%, so excluding these type of patients could possibly be “throwing the baby out with the bath water”.)

 

[Learner1]

This is interesting, but I'm a little confused here...

They threw out all the vitamin markers so as not to confound the data with supplements people were taking, except for B5 for some reason...

50% of the patients were on antidepressants, like SSRIs and SNRIs, which are known to impact mitochondrial function and deplete key nutrients (like folate...).

For these reasons, this study doesn't seem relevant to me. I'm not depressed or on psychiatric medications and the consensus has been that most patients aren't, but that ME/CFS and psychiatric diagnoses could co-occur in some patients.

And, my doctors have found numerous abnormalities in my biochemical pathways for which targeted nutrient interventions (antioxidants, B vitamins, amino acids, minerals, lipids, etc.) have had quite profound effects on my symptoms and have been lesding to overall improvement in my situation.

It is just one window into this disease, sort of like the proverbial three blind men looking at an elephant. The other metabolomics studies (McGregor, Armstong, Naviaux, Nathan, Fluge, Mella, etc.) contain important nuggets as well.

 

[sar88]

@sar88 sorry I don't know who all contributed to the study...you can check out this more detailed article below if you want to comb through.

https://www.nature.com/articles/s41598-018-28477-9

I'm not implying to bombard Dr. Lipkin with emails, but have you tried reaching out to him and asking him if you can't find the answer? I only ask this route because he's been very gracious enough to email with me occasionally - something I've seen with a fair amount of CFS/ME researchers that are willing to be that accessible with patients reaching out.

Just an option if the other avenues aren't fruitful.

I am not going to message him yet. hahah I thankfully just received an email from one of his staff members with an application for their community advisory committee at Columbia which would work with the Researchers, clinicians, and community. I will be meeting with them and all member twice a month so all my questions will be answered if I get it that is. I am praying I do not just for me but I think I could be an asset to the community.

 

[sar88]

This is interesting, but I'm a little confused here...

They threw out all the vitamin markers so as not to confound the data with supplements people were taking, except for B5 for some reason...

50% of the patients were on antidepressants, like SSRIs and SNRIs, which are known to impact mitochondrial function and deplete key nutrients (like folate...).

For these reasons, this study doesn't seem relevant to me. I'm not depressed or on psychiatric medications and the consensus has been that most patients aren't, but that ME/CFS and psychiatric diagnoses could co-occur in some patients.

And, my doctors have found numerous abnormalities in my biochemical pathways for which targeted nutrient interventions (antioxidants, B vitamins, amino acids, minerals, lipids, etc.) have had quite profound effects on my symptoms and have been lesding to overall improvement in my situation.

It is just one window into this disease, sort of like the proverbial three blind men looking at an elephant. The other metabolomics studies (McGregor, Armstong, Naviaux, Nathan, Fluge, Mella, etc.) contain important nuggets as well.

I agree about the antidepressants!!! I think one of the problems with the research through Columbia is that they just take patient samples from Clinicians who are contributing without minimizing variables like antidepressants and or diversity in many ways. Most people with ME due not have typical depression as categorized by DSM criteria but more atypical and as a consequence of ME and antidepressants certainly can affect results!! Hopefully I will get the position as a member for their community advisory committee at Columbia so I could voice these types of concerns!! One of my jobs and goals would be helping recruit and making sure patients selected for research were not just selected because they were patients of the Doctors contributing to the research but were selected via a selection process open to everyone with ME with the goal to represent the community as a whole, increase diversity, and maintain variables like that. I do not like how the average age of samples either!

 

[sar88]

Dr. Lipkin has been working on ME research for almost a decade now

Yes but it has only recently been his goal to be the first to figure it out over the next 3 years! I only know this because I was creeping on his phone conversation while waiting for a meeting at Columbia. I am not always a creep hahah. I just so happened to be there while he was on the phone.

 

[sar88]

@sar88 - In the microbiome and metabolome studies, the samples for ME/CFS patients came from Dr. Peterson, Dr. Bateman, Dr. Klimas and Dr. Levine. There were 50 patient samples. The studies do not say how many samples came from each clinic. Best guess is they were divided equally(?) between these 4 sites, but you would need to ask that specific question to Lipkin or one of these doctors. The information as to where the samples came from is set forth in each study. The link to each of the studies is posted in reply #6 above.

(Note - I believe that Dr. Montoya was originally one of the physicians/sites that was suppose to supply samples. If his samples would have been included, then there would have been 5 sites contributing a total of 50 samples or 10 samples per site. It would be interesting to know why Montoya’s samples were not used. Especially in light of the fact that the “pathogen study” that he and Lipkin were involved in reported 85% of the patient samples as showing some type of retrovirus, but Lipkin did not feel that this should be pursued (at least at that time).

It is also not clear from the information in the microbiome and metabolome studies, if the samples were from the same group of samples used in the multi-site XMRV replication study. It is my understanding that Dr. Montoya’s samples were also to be used in that study, but they were eventually excluded along with a long list of other exclusions that included excluding patient samples such as those with underlying thyroid conditions. A lingering question has remained about whether or not the list of exclusions took out too many ME/CFS patients who may represent a strong contingent of people with this illness. It is thought that the thyroid could be one of the compartments where a pathogen may reside. The number of ME/CFS patients with underlying thyroid conditions is thought to be well over 50% and as high as 80%, so excluding these type of patients could possibly be “throwing the baby out with the bath water”.)

I agree completely with the thyroid statements! I actually feel inflammation within my thyroid whenever I take herbs that are suppose to be antimicrobial. I also confirmed this by getting labwork one of the times I had this happen. My revere T3 and free T3 and T4 were both increased without an underlining thyroid condition or change in TSH.

I just stated in another reply how I received an email last week from one of Columbia's research staff members urging me to apply for a position on their community advisory committee at columbia which meets with all members of contributors. I am praying I get the position! I would have access to this information. Not only would I be an advocate to advise the committee about the needs of the community but I would be working as a liaison to make sure the community of ME suffers had access to important information like this.