Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Jarred Younger does a webinar with more updates

Discussion in 'Latest ME/CFS Research' started by Belbyr, Dec 13, 2018.

  1. Belbyr

    Belbyr Senior Member

    Messages:
    222
    Likes:
    441
  2. Diwi9

    Diwi9 Administrator

    Messages:
    1,062
    Likes:
    3,864
    USA
    Thanks for posting, I missed this today and consider myself Jarred Younger's #1 fan...well, along with many others on PR!
     
    Sushi, Moof, jesse's mom and 5 others like this.
  3. bertiedog

    bertiedog Senior Member

    Messages:
    1,254
    Likes:
    2,037
    South East England, UK
    It was one of the best webinars I have listened to, really good explanations of how certain areas of the brain light up using an adapted MRI machine. His study was a small one, only 15 ME patients versus 15 women aged around 40, all women. He had described the study as the brain on fire.

    He found that certain chemicals were elevated in the patients with ME. They were choline which he said can indicate rapid cell turnover which shouldn't be happening. None of the controls showed this elevated choline.

    Another elevated chemical was lactate which he said usually you wouldn't see this in the brain, none of the controls had this. Elevated lactate levels also showed increased cell turnover in the brain and in the ME patients was 4 times higher than in the controls. I think he said that running out of oxygen or exceeding your ability to make oxygen could cause this neuroinflammation.

    The fascinating thing about the research was that the areas that lit up were ones like the hippocampus, cerebellum, insular and a few others I didn't get to write down. All these were involved in what Jarred called the sickness response causing the same sort of symptoms you get when you have flu. Things like malaise, headaches, muscle pains, depression, anxiety, balance issues and of course pain and several others I didn't write down but all of them can be experienced by sufferers of ME.

    A couple of other brain chemicals myo-inositol and N-acetylaspartate showed no difference in levels in ME patients v controls but he said this was a good thing because he thought it meant there wasn't permanent brain damage unlike some other neurological diseases like Parkinsons, MS, Alzheimers. N-acetylaspartate would be at a high level as a sign of a healthy brain.

    He stressed the whole picture involved neuroinflammation and when looking for treatments it would probably involve anti-inflammatories that could cross the blood brain barrier. So far there were none that he knew of. LDN was mentioned but he said it wasn't perfect because it suppressed neutrons as well as the glial cells whereas we needed just the microglial cells turned off.

    He also mentioned some herbals like curcumin or boswellia might be helpful but he was doing a blinded study at present to see if they would work to calm the neuroinflammation.

    One method that might be helpful he described as brain cooling but so far there were only invasive ways of doing this although he said that now there was a vagus nerve stimulator that could be trialled.

    There were some good questions but I had better stop as I have a migraine developing.

    Pam
     
    Last edited: Dec 15, 2018
    Marley101, Aroa, Countrygirl and 14 others like this.
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    758
    Likes:
    2,486
    Excellent write up, thank you.
    Two small corrections that are worth editing though in my view.

    NAA is reduced or absent in brain damage not high.

    Myo-Inositol is raised as a glial inflammatory marker, so in ME it should be raised not normal.

    One thing worth remembering, is because CFS is diagnosed without testing using exclusionary (negative) tests for other conditions to guess we have CFS, then when we pop ourselves under a scanner, results won't be consistent.

    Really we urgently need a diagnostic test, then repeat Jarred Younger, Nakatomi FDG-PET inflammation study etc and the inflammation findings will be far more impressive.
     
  5. raghav

    raghav Senior Member

    Messages:
    385
    Likes:
    378
    India
    I could see only the last 5 minutes in which Younger said they are working on a tweaked naltrexone which will attack only the microglia leaving the neurons intact. I dont know how long that will take to reach patients
     
  6. jesse's mom

    jesse's mom Moderator

    Messages:
    2,869
    Likes:
    7,189
    Alabama USA
    I am so happy to see this ongoing research I am also encouraged that more researchers with different focus' are working together!
     
    Shoshana, Sushi, Moof and 1 other person like this.
  7. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,950
    Likes:
    26,559
    Albuquerque
    Some of us have found medical cannabis to be very helpful in dealing with symptoms. I did some quick online research and apparently it is both an anti-inflammatory and able to cross the blood-brain barrier. It would be so nice if there weren't restrictions on researching it.
     
  8. Sushi

    Sushi Moderation Resource Albuquerque

    Messages:
    16,950
    Likes:
    26,559
    Albuquerque
    Webinar now up:
     
  9. jesse's mom

    jesse's mom Moderator

    Messages:
    2,869
    Likes:
    7,189
    Alabama USA
    That guy is in my state! Just a 5 hour drive! I am so excited about his research. I messaged his group to let me know if they need more affected brains. Count me in, my brain is definitely affected!

    I also love the way he talks, just normal... no science jargon that goes beyond a non science background. He speaks plainly and with compassion for patients!
     
  10. Belbyr

    Belbyr Senior Member

    Messages:
    222
    Likes:
    441
    Over time I have learned to like him too. At first I thought he might have been just lone researcher that might not amount to much, then he starts dropping bombshells all of the sudden. It could be him that gets CFS a lot more funding.
     
  11. nandixon

    nandixon Senior Member

    Messages:
    925
    Likes:
    2,392
    I haven't watched the video yet but I'm surprised he said that because he's definitely aware of the “antibiotic” minocycline, which I've seen him mention before a few years ago (see here).

    Minocycline easily crosses the blood-brain barrier, is a potent anti-inflammatory, and can be taken long term. See, e.g., this 2013 review:


    (I'm not sure what the current findings/applications regarding minocycline are.)

    I believe some ME/CFS patients have found long-term use of minocycline helpful.

    I wonder if Dr Younger has looked at minocycline and decided it wasn't a good fit for one reason or another?
     
  12. bertiedog

    bertiedog Senior Member

    Messages:
    1,254
    Likes:
    2,037
    South East England, UK
    Thanks I have just changed my original post regarding these having checked my notes.

    Pam
     
    jesse's mom likes this.
  13. bertiedog

    bertiedog Senior Member

    Messages:
    1,254
    Likes:
    2,037
    South East England, UK
    There were several questions at the end of the presentation -

    Jarred stressed again that once there is inflammation in the brain it can affect anywhere in the body so there could be quite a range just as experienced with a bad bout of flu - sleep, pain, motivation, fatigue, hypersensitivity, malaise etc.

    There was a question regarding whether a retrovirus could cause this and he answered that it could do but also that many events might trigger the illness, virus, mold, fungi, bacteria etc.

    He said it will be different for everyone. The specialist scan that he uses will show chemicals in the brain that were being produced just minutes before entering the scanner and it is possible that if he was to rescan several days later when the ME patient might be feeling better that the scan could look different, he doesn't know yet.

    He felts this ability to scan the brain with his new technique should change everything and it could be used with other illnesses like epilepsy to see exactly what is going on. He has been approached by other researchers as to the necessary adjustments that had to be made in order to carry out this type of scanning.

    He was asked whether he shared his knowledge and he answered that he was happy to do this and already he had several clinicians who were also scientists who have asked him for more information and he felt this was very positive because they treat patients as well as doing research.

    His paper is due to be published very soon.

    So far he has only been working with ME patients who are mild or moderately affected, around 50-60% on the disability scale but he said either that he hoped to work with the more severely affected patients soon so he can then compare results or that he is already conducting a study with the more severely affected patient. Sorry I am not quite sure which one of these is correct but he is definitely aware that this is what is needed.

    He was also asked how physical exertion reflected on the brain scans but he hasn't done a study on this yet but thinks that it could be done in the future.

    With regard to physical exertion, in inflammatory states he felt it was impossible to actually do this to any great extent because it would be impossible. There was a possibility that microglial cells might be interpreting signals from the body (beta endorphins) in a way that was aggravating the microglial cells. This was a possibility but he hadn't tested this theory yet. He also mentioned that cortisol could be involved.

    Lastly he mentioned that he was going to collaborate with other scientists who were specialists in genotyping because he felt this might be important and he had very little knowledge in this area.

    I hope that the above is correct but I am happy to edit any of the above if I have got it wrong!

    Pam
     
    Sushi, Countrygirl, voner and 3 others like this.
  14. lilpink

    lilpink Senior Member

    Messages:
    976
    Likes:
    5,774
    UK
    Has it been uploaded to You Tube I wonder? I can more easily cope with it via that portal as I can access via TV and thus be horizontal etc and so on...
     
  15. jesse's mom

    jesse's mom Moderator

    Messages:
    2,869
    Likes:
    7,189
    Alabama USA
    If you follow his work, he takes questions at the end of his talks. You can submit a question online.
     
    Sushi likes this.
  16. pibee

    pibee Senior Member

    Messages:
    267
    Likes:
    403
    Thanks for the summary!

    Do you know by any chance if regular MRI spectroscopy is useful to see choline and lactate levels? Because from what I hear he is using some unique technique and MRI spectroscopy is widely availabbe, I think.
     
    jesse's mom likes this.
  17. raghav

    raghav Senior Member

    Messages:
    385
    Likes:
    378
    India
    BTW has anybody tried montelukast for brain inflammation. It is supposed to be very effective in rats in calming the microglia.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4639806/

    A 6 week (not 4 months) trial on rats which had issues with the microglia became completely normal. It apparently crosses the blood brain barrier. I wonder if Jarrey Younger is aware of this. He must be. I am also interested in the herbal cocktail he is researching on for calming the microglia. It would be nice if he mentions what it is.
     
    Last edited: Dec 15, 2018
  18. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,368
    Likes:
    2,775
    United States, New Hampshire
    I have been trying to understand the significant improvement some with ME/CFS get with high dose Thiamine, Coq10, Dichloroacetate (DCA) and Alpha lipoic acid. All of which improve mitochondrial function.

    With Jarred Youngers' hypothesis that it's brain inflammation causing most or all of the symptoms in ME/CFS. I just did a quick search and it looks like ALL of these things cross the blood brain barrier (BBB)!

    I was thinking they were only affecting the mitochondria in the body but it looks like they also cross the BBB.

    So it might be that the improvement people are getting from these substances, are from improving mitochondrial function in the brain, not the body.
     
  19. Vojta

    Vojta Senior Member

    Messages:
    164
    Likes:
    315
    Czech Republic
    I tried Montelukast for MCAS for few months and I have a lot of neuroinflammation. It didn't help for either. Maybe it does to other people. I had no reaction at all. But later other MCAS inhibitor, Cromolyn, improved MCAS and my neuro symptoms. I'm trying to get enough to up my doses. I hope Dr. Younger is looking into this connection of Mast cells and neuroinflammation.
     
    jesse's mom, Fogbuster and pibee like this.
  20. MonkeyMan

    MonkeyMan Senior Member

    Messages:
    115
    Likes:
    222
    Last edited: Dec 16, 2018
    jesse's mom and pamojja like this.

See more popular forum discussions.

Share This Page