007 - Detecting neuroinflammation with brain imaging
HTML-код
- Опубликовано: 12 сен 2024
- Here is one of our recent studies using brain imaging to detect neuroinflammation in fibromyalgia. You should be able to download the entire article for free at one of the links below. - Jarred Younger
journals.lww.c...
www.ncbi.nlm.n...
As someone with M.E/cfs, I really appreciate this series of videos you've been putting out. Thank you for using your precious time to let us know the wonderful stuff you've been doing. Having been severe enough to have been horizontal for the last 7 years, this makes a difference. So happy for the all the fibro people watching this. Can't wait to see the results for M.E/cfs.
Thank you for letting me know. I'm glad they are helpful! - Jarred Younger
Yes, absolutely, identical level of interest for me. So, thank you for your determined efforts Dr. Younger.
Although I've had M.E. for 24 years, I was seasonally functional in summer for about a decade, much worse in winter, then increasingly worse for the next decade, finally now 'horizontal' for more than 3 years. I would say that I've been fortunate to have had some functionality and some quality of life for as long as I've had. I have never been bed-bound, although at times, not so far from it either.
My G.P.'s reaction is classic. In our 3X/year, 10 minute phone consult she asked 'how much exercise are you getting?' I said, 'I don't think you have a very accurate understanding of my condition. I am lying down (by necessity) for about 23 hours per day, or perhaps more on occassion'.
Her reaction was classic: "oh". Followed by a long silence.
I've told her straight out that I think she knows nothing about this condition. To her credit though, after my '23 hours lying down' revelation, she got me to a good specialist who validated my M.E. diagnosis. My G.P. acts as if that diagnosis isn't a real thing. She has never once made any reference to that specialist's report, even though she asked for it and I think the assessment was very rigorous.
As an aside, my CRP was very high for years, like 22, indicative of massive chronic inflammation. I made a lot of lifetyle changes, like doing a keto diet. My last CRP, 3 years ago was 2.7. I recently asked for this to be re-checked to see where I am now on that scale. My G.P refused to order that test. I explained why I wanted it based on previous testing. She said no. Bizarre logic.
I'm not writing this to complain. Things are as they are. But I want to communicate to others how the medical system utterly fails us. I can write this today because today my brain feels better than usual but writing this will exhaust my brain for 24 hours at minimum. Or it could be days or weeks until I can think properly again. I will have used all my cognitive 'bandwidth'. These are things that no one sees. I 'look fine'. All the effects are invisible.
So thanks again for the study of this condition. To be honest, my assessment of the medical community in regard to this particular condition is dismal. They did the same thing with Lyme disease - to try to pretend or ignore it away. Medical doctors can't even make it to the most minimal standard of 'first, do no harm'. They are actually doing a great deal of harm by, in my case, ignoring even that the diagnosis exists, though it comes from a board certified specialist. My doctor will not use the words 'chronic fatigue', much less M.E. ... but hey, it's only profound fatigue and cognitive impairment lasting for 24 years, getting worse, and is completely debilitating. I regard the medical community, with some exceptions, as willfully ignorant of ME/CFS, FM, Lyme.
Did you try any medication which is helpful for your ME/CFS?
@@ethanchang1495 I tried several of the most common meds for CFS and had no positive effect. They may work for some people & it may be helpful for them to try but for me drug therapies just didn't work.
Dr. Sarah Myhill in the U.K. suggests starting with changes to diet - a modified 'paleo-ketogenic' diet. She believes (I think) in cutting out dairy, going low carb, high fat, no grains. Something like that. I have done a keto diet for a couple of months & did have some benefit. The above diet will reduce inflammation which may be beneficial.
Dr. Younger , at the N.I.H. Presentation in 2019, I knew that you were going to be a researcher to follow. Thank you for all your lab does and how it allows us the patients to have hope. 😊😊
Very helpful information and validating. These videos are helpful for myself, yet also to share with people who have no idea what fibromyalgia is. Validates this as a 'real' illness. These videos are appreciated Jarred 😊
Thanks! My ultimate goal with the neuroimaging is to allow someone to go to a clinic, do a 20 minute scan, and have a tech print out the brain image, point to a region and confidently say, "Yep, here is the fibromyalgia right here". It would help patients a lot to have the validation, and would speed up treatment. - Jarred Younger
You're a gem, Dr younger, for sharing your schedule to update the community. Thanks so much for everything.
The potential out come for a test which is so needed is hopeful; we all experience the crash after pushing/ exposure to a trigger, and our very individual body responses - but we look normal. No one believes us, in fact they shun us for our 'behaviour' simply as we do/not do as we know our bodies need - and as humans, to have your family do this is devastating but it is almost unrecoverable when your doctor does it. My daughter saw five doctors, no doubt as a mother I was labelled / scrutinised for my 'hysterical' part, before her ME diagnosis was given.
A test that can be replicated would stop so many people's decent into severe illness (in the case of MECFS at least) it would have a positive impact on the economy of countries.
More power / funding to you all
Exactly! This is one of several experimental imaging approaches that may accomplish that goal. The most frustrating part for us working on these tools is how long it takes to do all the reliability and validity testing. But we have to be absolutely sure that the scan works as intended before we roll it out clinically. I am sure clinicians would rapidly adopt a well-designed and clear test. - Jarred Younger
Thank you for this information Dr Younger, it goes a long way to helping someone realise they are not going mad, or making things up, that their symptoms have a physical causation. Thank you so much for your efforts in this research, especially to support people who feel they have no voice and are fighting to be understood that their 'invisible' illness is real.
Very interesting, thanks for sharing
Good to hear from you. Thanks!! - Jarred Younger
Very interesting, i think i've heard about this planned study in a OMF talk with you 5 years ago if im not mistaken.
I'm a very severe ME/CFS patient, completely bedridden for 7 years lying in a dark room, taken care of by my parents. I'm very sure i have the real ME with PENE and maybe even fibromyalgia on top (or its just ME).. and looking at all the research done so far, i think, yours explains it the best way.
The feeling of being ill like you have the flu, the pain, the changing sensitivity to external stimuli, all of this can be caused by an inflammation in the brain (I had increased protein levels in my spinal fluid, but the doctors couldn't see a cause and sent me home 7 years ago).
What I'm wondering, though, how does this theory fit in with the DELAYED deterioration after exertion? The crash often comes many hours, sometimes a day later.
I'd be very interested to hear your opinion on this, Dr Younger. Thank you for your work, it means a lot to me!🙏🏽
Thanks for another informative video!
Welcome! - Jarred Younger
Super interesting. I appreciate you sharing this work and have so many questions!
1. You mentioned that you'll need a higher powered study to really hone in on where in the brain inflammation is occurring. Do you expect that there will be a consistent pattern in the regions of the brain with inflammation in FM patients, or do you think that there will be a large variation within the FM cohort?
2. Going into the ME/CFS study, what similarities or differences would you expect to see in the findings when you compare FM and ME/CFS?
3. Are microglia (and their associated inflammatory responses) limited to the brain, or do they also exist in the peripheral nervous system? What techniques are available to measure inflammation in the peripheral nervous system - and do you think FM/ME/LC/GWI inflammation is limited to the brain, or exists throughout the nervous system?
Many thanks for this series. I've watched every one so far, and am learning very much! I know LC isn't your primary research focus right now but at some point I'd love to hear how you are thinking about/integrating the research in all of these illnesses with one another. And the big question - are they truly different conditions, or are they different triggers/manifestations of the same core pathophysiology? (That's the billion dollar question, isn't it?!)
Curious with others here with ME/CFS, do you deal with pressure in your head and ears? Diplacusis/double hearing? I’m going to try cold packs on my neck to maybe see if it helps. Do that most of the summer anyway, but trying the sides instead of back.
Pressure is constant and headaches never stop
Yes to the pressure and pain. Not sure what double hearing is, but I hear everything or my ears feel "full".
Thank you for sharing this research. I have been working with my neurologist since 2018 to try to get my brain inflammation to cede.
So grateful for these videos. Thank you.
Wow interesting! I always wondered why brain inflammation was not addressed much which likely is linked with many neurological disorders too. Acetyl Glutathione and Longvida Tumeric have some evidence they cross the blood brain 🧠 barrier which may offer some help with those with fibromyalgia maybe
Right, those are both interesting compounds. We are testing curcumin (instead of turmeric) in a clinical trial now. And multiple studies have shown brain glutathione to be abnormally low (in myalgic encephalopathy/chronic fatigue syndrome especially), though I have not tested the supplement for efficacy. I have heard that intranasal glutathione could work when oral formations don't, but I need to look into it more. - Jarred Younger
Has this been published in other journals than pain, like neurology etc? This needs more exposure, the current model for fibromyalgia is nonsense.
How can we help you more getting a larger study funded for fibromyalgia? Thank you for the information!!
Thank you for this information!
I’ve had 6 know strokes from Cerebral vasculitis. prior to my strokes was exhausted all the time, had lot of skin problems, and a lot of intermittent pain.
REALLY interesting and compelling start to your research! Looking forward to the data on ME/CFS. Thank you!
So interesting! Thank you so much for these videos. And making it so understandable.
How does one treat the brain inflammation? Just general body-wide anti-inflammatory measures? I can’t imagine the ice packs used for a sprained and swollen joint would work the same way. 😄
That is the biggest open question. The typical anti-inflammatories can help, depending on what the root driver of the inflammation is. Drugs like aspirin can reduce levels of inflammatory agents in the brain. But, they will probably not be sufficient. What is needed are medicines designed to cross the blood-brain barrier at optimal levels that also directly target the microglia. Multiple groups are working on those, but nothing is widely available yet. The closest is probably low-dose naltrexone. Believe it or not, one approach being investigated is cooling blood before it enters the head, using a cooling neck wrap. We find that brain temperature is elevated when there is inflammation. So, cooling the circulating blood a bit may actually reduce brain inflammation. Don't give up on ice packs yet, but they would probably be too awkward to use for brain inflammation. Unfortunately, putting them on the head doesn't work because the skull is too thick. There are special brain cooling devices that are typically used in emergency head trauma. We have to do some testing to see if it is actually worth doing. If it only works as long as the neck cuff is on, that wouldn't be very useful. - Jarred Younger
I am ready and willing to be a part of this study. ME and Fibromyalgia
Minor correction, that's Dr. Padula in Connecticut, he's a neuro ophthalmologist who specializes in visual processing problems with Lyme patients.
Could inflammation in the visual area cause blurry vision? I have that problem and I've met others who do too.
We can test that. Participants record problems with vision in their baseline questionnaires. So we can rank them from high to low inflammation in the occipital lobe and then see it that tracks with self-reported visual problems. That would be great to know if the two correlate. - Jarred Younger
Blurry vision, brain fog ,lightheaded probles to concentrate ,balancing problems and anxiety and depression..
My vision has certainly worsened significantly. And it fluctuates with the way I feel. So it must have something to do with that.
Thank you.
I am wondering if some of the fibro patients have lyme/co-infections (I do and it took 3 decades to get to Igenex testing). They have found on autopsy that many of the fibro patients do have the lyme spiro/bacteria. Lyme+ often have problems in occipital lobe, plus visual processing disorders along with other visual deficits, Dr.Padulla specialist in that area, just finished a webinar in which he was a presenter. Anyways, food for thought. I'm going to try to get a copy of my pet scan that was done several years ago to check why my dopamine levels were so low and no I do not have Parkinsons. Love your research and appreciate you much, keep up this profound work, it's an area that needs a lot of help!
Doc I wish we could meet one day. I suffer from long covid and I've been researching and documenting my own disease, cause nobody seems to care.
I even got a PET scan and found brain hypometabolism. Sadly nobody gives me a treatment plan or a prognosis. Neurologist simply don't know what to do, it isn't their classic MS or TBI.
I've been researching and I wonder if a treatment plan with Interferon Beta 1-b could reduce that brain inflammation and blood brain barrier leakage you mention.
I've tried Hbot, but the results aren't immediate or noticeable. I've been informed by another doctor about exosomes and stemcell treatments, but I can't tell if there is science in that idea or just another grifter taking advantage of despair.
Thank you doc for making this video and spreading information about our condition. We are not dead yet (even though some wish we were, in order to save the economy).
I left a comment on a previous video recently about whether autoantibodies in the CSF (another aseptic cause of inflamation?) could be detected without a spinal puncture, as suggested by my neurologist. It seems that this PET scan is one way but, unless it's possible to replicate your technique anad analysis in a clinical setting, this won't help me. Interestingly, my CRP, CBC, and ANA blood tests are all normal, so I wouldn't have been excluded by your study criteria. I still suffer from head compression headaches, and facial paresthesia >2 years after my accute covid infection for which my doctors have no explanation. Early on in my long covid syndrome I had elevated serum cytokines (tnf-alpha, IL-10, scd40l) but most of this has settled to lower levels after 2 years. An MRI found nothing but that's not surprising for the reasons you point out. I don't think my experience with long covid is unusual at all. Your work is very important for many people still suffering but faster is better.
Great information! Wow the more we learn the more we realize that we need to learn. Does the inflammatory response from fibromyalgia and or something like PSA through off CSF lactic acid levels? Mine have been wonky for years during a flare up. This explains so much especially with the role of microglia and brain fog knowing what their special role , at least some of it deals with the storage and use of energy and response to inflammation. It may seem silly to say but I increased my magnesium glycinate quite a bit because it does cross over the blood/brain barrier and has provided a bit of relief with not being able to sleep and the constant muscle cramping. Thank you again for your information and is there a link to read the study and information possibly to download a pdf file? Very interesting.
I usually test normal with bloodwork but i have had two EEGs and told i have epilepsy although i think my seizures happen at night. I dont have them during the day-just spams. I have had a mri and that didnt show anything. Where do i go from here? Have been diagnosed with me/cfs, fibromyalgia,etc.
Thank you for this! What about brain inflammation in Long Covid? We have a lot of similar symptoms to fibro. Inquiring minds want to know.
Why not benzodiazepines for brain inflammation? Many of us with ME get good results. I Also have fibromyalgia and am being treated as if SPS until dx finalized. Diazepam is amazing for me.
Xanax is what works best for me. If I take 3 g my headaches are much lower but I can’t function… I noticed Zopiclone works well if I take one and wakes up after one hour. Unfortunately, the effects don’t last. These are tests, I don’t do this on a regular basis.
Benzos will not help the condition long term. Trust me as a person that has been on and off them it’s better to find another therapy.
Benzos dependency is a bitch.
Plus there is evidence of gaba/glutamate imbalance in me cfs.
Benzos will only make that problem worse.
@@davidkruse4030 @davidkruse4030 I am absolutely not concerned about physical dependency. As they are medications I need for my movement disorder. I don't tend to have addiction tendencies . They help me tremendously with ME but I am actually taking them to help control what at this point is being treated as SPS. Actually the whole point of taking them is the Gaba issues. I am one who can see almost an immediate relief of crash symptoms with low dose diazepam. And I can't function at all without them for my movement disorder. As is with them low dose 3 times a day I still can't walk without rigidity and use a power wheelchair full time. I actually completely disagree that they would only make the problems worse for folks with ME. So many severe patients get results with them. But also perhaps you should not tell other people that they shouldn't take essential medications.
@@davidkruse4030 @davidkruse4030 I am absolutely not concerned about physical dependency. As they are medications I need for my movement disorder. I don't tend to have addiction tendencies . They help me tremendously with ME but I am actually taking them to help control what at this point is being treated as SPS. Actually the whole point of taking them is the Gaba issues. I am one who can see almost an immediate relief of crash symptoms with low dose diazepam. And I can't function at all without them for my movement disorder. As is with them low dose 3 times a day I still can't walk without rigidity. I actually completely disagree that they would only make the problems worse for folks with ME. So many severe patients get results with them. But also perhaps you should not tell other people that they shouldn't take essential medications.
@@TamraLSpeakmanShatul You should also have respect for peoples concern. Keep in mind that benzodiazepines have destroyed millions of lives. There is nothing more painful than benzo withdrawal and they cause dementia in anyone who takes them long term.
How common do you think systemic fungi/yeast infection or mold toxicity causing chronic brain inflammation in non AIDS patients? I have reoccuring symptoms of fungal infections here and there as well as nail fungus on all my toes for like 10 years but my GP won't treat me with any medication since I often get side effects of other medication. When I have a relapse of worsning of symptoms it seems like the fungal infections flare up.
I don't have AIDS but I do have ME/CFS. I would've liked to try soemthing that can get rid of systemic/invasive fungal infections for good. I've told them I want to get tested for systemic fungal infection but it doesn't seem they believe I could have that.
My vision get worse with every relapse and when I let an AI app guess what's infecting my eye by scanning a picture it had fungal infection in the eye as the most likely cause.
Would MRI Neuroquant show inflammation in the specific regions?
Good question. We would have to run both in the same person to know. Neuroquant uses a volumetric approach that could show atrophied grey or white matter. I haven't seen clear evidence that ME/CFS and FM are neurodegenerative. I run MRSI tests that show markers of neurons (N-acetylaspartate), and those values look fine. It doesn't look like the inflammation is damaging the neurons or causing swelling. I think what needs to be done is 7 Tesla instead of 3 Tesla scanners which are much more powerful and could detect abnormalities that are too small to catch with typical MRI scanners. The 7T scanners are not common, but are becoming more available. I know a couple groups that are using these scanners in ME/CFS and/or FM now. But for now, I don't think a clinical scan using MRI Neuroquant will see anything abnormal in the regions seen in this study. - Jarred Younger
Thank you! I heard you talk about LDN several years ago. It’s great that you’re actively working on ME/CFS. Thank you for your work! 😎❤️
@@youngerlab I can't even imagine tolerating a 7T MRI with ME or Fibromyalgia. A 3T I had for pituitary microadenoma and will have again soon was bad enough compared to the slightly weaker ones they use in my area for my regular MRIs. What do y'all do to help the patient handle it?
I have a Sjögren and persistent debilitating headaches. My MRI are normal.
Tum logo n sabi n mera use kiya h national or international logo n
AAP Mari life d sakte h nahi dream tum mujhe kya dogey u are a bi Kari