News From Jarred Younger / Neuroinflammation, Pain, and Fatigue Laboratory at UAB, From Aug 2020

In video #010 in the comments section Jarred Younger gave an update on the Good day / Bad day study and the reason it has been delayed.

"Thanks for checking!

The good day/bad day study is the 3rd study of our 5-year NIH grant. We are wrapping up the 1st study (MRI) and 2nd study (PET), and now starting the good day/bad day study.

I meant to start it years ago, but the COVID-19 stuff threw a big wrench into doing ME/CFS good day/bad day work. When people were having a bad day, they were actually sometimes just getting a viral infection, which is a totally different question. I waited a long time, but the infections and vaccinations seem to be quiet enough now for me to do good day/bad day work. - Jarred Younger"

It looks like Jarred Younger has been answering quite a number of comments in some of his videos. It's nice to see he engages.

 

Sorry/not sorry to be cynical, but the odds that LDN plus CBD will cure anything at all are round about zero.

 

I don't think it was expected to be a cure for GWI. Even finding a treatment helps with symptoms can be useful and tell us something about what is going wrong. There aren't really any proven treatments to reduce TSPO activation otherwise they would have been tested in clearly neuroinflammatory diseases. At least LDN is being tested in clinical trials elsewhere so I don't think this is a major loss.

 

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

 

The idea of measuring the signaling response to a stimuli is a good way to go about this. If there ends up being a signaling problem, there has to be some reason that the signal is present. Even if the signal is erroneous there must be some reason why it is happening in the first place. If we can find a way to figure out what the signals are responding to that would tell us a lot about the problem.

Probably just a coincidence but it is interesting that Fractalkine may be involved in glutamate neurotransmission.

 

On Facebook "I have a great update on our leukocyte "brain infiltration" study. The FDA gave us permission to start scanning chronic fatigue patients! Check out the video for more details. - Jarred Younger"

https://www.youtube.com/watch?v=VImABXhAP8A

 

Bolding added

I believe these are two of Dr. Younger's three studies as listed in ClinicalTrials.Gov

1. Assessment of Neuroinflammation in Central Inflammatory Disorders Using [F-18]DPA-714. (DPA-714)
Contact: Jared Younger, PhD and Jonathan McConathy, MD
The primary objective of this study is to measure the concentration and the regional brain distribution of activated brain microglia/macrophages using the PET radiopharmaceutical [F-18]DPA-714 in individuals with chronic pain and fatigue suspected to be associated with neuroinflammation

Population: Healthy volunteer OR Clinical diagnosis of Multiple Sclerosis (MS) OR Meets 2016 American College of Rheumatology (ACR) case definition criteria for fibromyalgia OR Meets 1994 Fukuda case definition criteria for Chronic Fatigue Syndrome

2. Tracking Peripheral Immune Cell Infiltration of the Brain in Central Inflammatory Disorders Using [Zr-89]Oxinate-4-labeled Leukocytes.
Jonathan McConathy, MD, PhD
This study will use brain Positron Emission Tomography/ Magnetic Resonance Imaging (PET/MRI) and an investigational radioactive drug called [Zr-89]oxine to track the location of white blood cells (also called leukocytes) in the body. PET/MRI will be used to visualize labeled white blood cells and determine if they enter the central nervous system in conditions associated with brain inflammation (also called neuroinflammation).

Population: Healthy volunteer OR Clinical diagnosis of Multiple Sclerosis (MS) OR Meets 2016 American College of Rheumatology (ACR) case definition criteria for fibromyalgia OR Meets 1994 Fukuda case definition criteria for Chronic Fatigue Syndrome​

Unfortunately, these studies are still using Fukuda to select patients. Lots of money and time spent on an outdated definition that doesn't require PEM

 

Thank you for adding valuable info/links!

Yes, super disappointing if the study doesn't require PEM? However, he mentions in this video that the first ME/CFS patient he's testing has to have PEM (at 4:53 min).

Also, for anyone who hasn't seen the original video where he explains everything about the study, it's this one: Tracking Leukocytes Infiltrating the Brain.

Edited: I mistyped, accidentally wrote "CFS" first instead of ME/CFS". Edited now, sorry.

 

Thanks for highlighting that!

ETA - If he is requiring PEM in all patients, he will hopefully update the info in clinicaltrials.gov. On the other hand, if he is using Fukuda, hopefully he will subset out on those with PEM versus not and report those separately

 

Sorry I mistyped, he said "ME/CFS patient" not CFS. My mistake, sorry!

 

I can't quote him exactly, but he mentioned starting with well-characterised patients with no potentially confounding diagnoses. From what I understand, there's a fair bit riding on this experiment for one of his hypotheses about ME and he'll only be able to scan so many people at this stage, so he's likely to go for clear cases.

Hopefully it'll either show something is going on or be clearly negative. That's probably optimistic, given how confusing most results seem to be, but we can hope!

 

@5:18 He states that almost all his Fibromyalgia patients met the criteria for CFS which I strongly doubt since Fibromyalgia patients tend to report improving from light exercise where as ME patients deteriorate. See:

Code:

https://old.reddit.com/r/Fibromyalgia/comments/174ur61/the_pain_is_different_with_exercise/

 

I see a crapton of people with FM, and on this sub, reporting PEM. We're mostly stuck with diagnoses based largely on what individual MDs fancy or happen to believe in, rather than what the patients are actually reporting. It's impossible to say what is valid and what isn't in terms of differences. Plenty of long haulers are also diagnosed with FM. It's a huge mess.

 

"Here is a quick update about my efforts to test dextronaltrexone in chronic pain, fatigue, and cognitive disorders related to brain inflammation. This substance has never been trialed in humans, and I want to tell you why it needs to be prioritized. - Jarred Younger"

https://www.youtube.com/watch?v=K2SYjG6jM5k

 

I added a page to MEpedia for Dextro-naltrexone, basically summarizing what he said in the video.

 

It seems like he might use a modified Fukuda in his studies which requires PEM.

This 2019 study from his lab says "participants with ME/CFS had to meet the following inclusion criteria: (i) age between 18–55 years; (ii) met Fukuda case definition criteria for ME/CFS (Fukuda et al., 1994), without the Reeves et al. (2005) modifications but with additional criteria proposed by Jason et al. (2010);".

And that Jason et al. paper gives an ME/CFS criteria whose second requirement is:

"Post-exertional malaise and/ or post-exertional fatigue. With activity (it need not be strenuous and may include walking up a flight of stairs,
using a computer, or reading a book), there must be a loss of physical or mental stamina, rapid/sudden muscle or cognitive fatigability, post-
exertional malaise and/or fatigue and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. The
recovery is slow, often taking 2-24 hours or longer."

 

"I believe microglia are the primary culprit behind fibromyalgia, ME/CFS, Gulf War Illness, Long-COVID, and other chronic pain and fatigue disorders. Here is a quick video on what I am trying to do to fix the problem. - Jarred Younger"

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