NIH Study Media Roundup

[Dakota15]

For any interested, I compiled media roundup of the NIH ME Intramural Study below.

Live Science: '''It took the rug right out from under my life': Milestone ME/CFS study begins to explain disease, but will it lead to treatments?’'

NPR: 'Clues to a better understanding of chronic fatigue syndrome emerge from a major study'

Science Magazine: ‘Sweeping chronic fatigue study brings clues but not clarity to mysterious syndrome’

STAT News: 'NIH study of ME/CFS points to immune dysfunction and brain abnormalities at core of long-dismissed disease’

New York Times: ''Study of Patients With a Chronic Fatigue Condition May Offer Clues to Long Covid'

Scientific American: 'People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Have an “Exhausted” Immune System'

Medscape: ''Deep Phenotyping' Identifies Abnormalities in ME/CFS'

MedPage Today: "Brain Dysfunction, Immune Abnormalities Seen in Post-Infectious Chronic Fatigue — Deep phenotyping study provides new clues about ME/CFS”

Bloomberg: ''Exhaustive Chronic Fatigue Study Points to Infectious Driver'

The Guardian: 'Scientists find link between brain imbalance and chronic fatigue syndrome’

 

[Dakota15]

Have any thoughts, follow-up questions, or curious on next steps?

- You can reach out to Dr. Avindra Nath, lead PI on this study. HIs e-mail is listed on the NIH site and he engages with outreach to patients frequently. His e-mail is avindra.nath@nih.gov and he's generally timely with communication.

- Walter Koroshetz, Head of NINDS, is another resource, who can be reached at koroshetzw@ninds.nih.gov. He also frequently engages with patients.

- New Head of NIAID, Jeanna Marrazzo, also engages with many in the ME community and is open to hearing feedback at jeanne.marrazzo@nih.gov

- New NIH Director, Monica Bertagnolli can be reached at monica.bertagnolli@nih.gov (and I would CC staff addresses of NIHExecSec@nih.gov & execsec1@od.nih.gov) if you'd like to see research on ME continue with her support

 

[Rufous McKinney]

Have any thoughts, follow-up questions, or curious on next steps?

I hope we can remain positive and upbeat in contacting these folks directly.

As opposed to venting or whining or being too profoundly critical. I also hope our major research folks can help tease out what all this might mean; and I am super grateful to @Murph here, who has done some additional analysis and has a helpful discussion in the other threads.

 

[Judee]

Thank you for all your hard work, @Dakota15!!

 

[Dakota15]

Thank you, @Judee

 

[Alvin2]

Thanks for finding and making this list. I find the temporal-parietal junction bit interesting but they seem to be proceeding on the theory that this is a brain caused disease, that patients can't use their brains to commit to physical activity which is objectively wrong, oxygen use testing shows patients cannot produce more energy when attempting to do so.

Nancy Klimas, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, who studies and treats ME/CFS, says her big takeaway from the study “is that this is a disease of the brain. … The inability to sustain energy was coming from” that organ.

I'm not buying this.

The temporal-parietal junction finding is more likely to be an effect, not the cause.

That said the T cell finding is interesting, now sure how to treat that. Can we transplant them from a healthy donor to an ME/CFS patient or extract some form the patient and culture them and re-inject them?

To be honest i think that WASF3 finding is more significant if it holds up.

 

[Alvin2]

Here is an interesting paper on CD226 wich is mentioend in one of hte above articles
https://www.frontiersin.org/articles/10.3389/fcell.2020.00564/full

 

[Dakota15]

Sharing this interview today from David Tuller with Michael VanElzakker on the NIH study. Sharing some notes (I know this will be critiqued, but sharing):

Dr. Michael VanElzakker:

“they have reported antigenic stimulation in the immune system, which to me was the take-home message that I wish people were amplifying”

“I would like to see patient advocacy groups demanding a follow-up for that – okay, what is my antigen? What are the antigens? What is that’s driving the immune system responses? Is it the same in everybody?”

“Those are questions that could be answered. They found evidence of activated T-cells. We have techniques now, further at the cutting edge, that are more expensive and difficult, where you can do T-cell sequencing, you can work backwards if you have isolated T-cells and figure out – to what is the T-cell responding? These are answerable questions that we can figure out."

"That is the kind of follow-up if I were in this study, I would be demanding. Okay, if my T-cells were activated, what is my T-cell responding to? Is it a pathogenic antigen or what? That is the thing I would want to be finding out.”

“I would be focusing on the antigen part – there is evidence of this antigenic stimulation – what is the antigen? Can we do biopsies? Can we do T-cell sequencing? Let’s figure out the actual cause what is happening to."

 

[Dakota15]

Hi all, just sharing this message today from Koroshetz, for visibility, when I had asked for paper amendment of ‘effort preference’ term.

“Understand the anxiety but it’s very important that the community understands the finding.

To simplify how the brain works I could say that the brain circuits are constantly estimating the difference between the effort required and the reward to be gained from executing an action. This applies to all behaviors, even to what I am typing now. This is easier to understand in estimating the degree of force you need to exert to pick something up something, but even the more automatic behaviors like whether we are “hungry” enough to eat. So the finding is very important. In the persons with ME/CFS the circuits that do this estimation of effort are malfunctioning. They even see an abnormality in brain activation related to this finding. They see alterations in dopamine metabolites (potentially related to the reward signals). And they speculate that it is abnormalities in the immune system that are driving the abnormality.

So this has nothing to do with “psychological”, this is a real abnormal finding in how our neural systems are supposed to work.

Planning a hybrid workshop to explain the findings to the subjects and the general community soon.”

 

[Dakota15]

Also if any advise a reply / rebuttal / follow-up back let me know any thoughts (there are several other leaders CC’ed in the thread, ie Nath, Marrazzo, etc.). Otherwise I’m unsure what to really say back.

 

[Rufous McKinney]

"So this has nothing to do with “psychological”, this is a real abnormal finding in how our neural systems are supposed to work."

My sense was there was something important and significant about this effort preference discovery, but they did not explain any of that well.

so what is said here above makes sense. And yes, we are constantly EVALUATING effort.

the comment about eating is fascinating. I am very uninterested in eating food. Most of the time I am trying to avoid or put off the next meal. I see eating as a big effort my body is asked to process, and I don't have the umphff for this effort. This does not feel psychological to me, its more the Sickness Behavior anorexia tendency.

My low blood sugar drop forces me to go eat something. Then I'll go oh ALRIGHT, I'll try to eat something. And force myself.

 

[Dakota15]

This script is in no way perfect, but if any also want to request to amend 'effort preference' here was my high-level message with asking. Feel free to use any parts of it for those who want to reach out as well

https://docs.google.com/document/d/17LFcZmrIK4KNS7vZkjgGnnji9HzOrUQ0roIH-Qr053E/edit