I'm so grateful for your perseverance, Dr. Younger. As a severe M.E sufferer, you give me a sense of hope which makes the illness easier to live with. 🙏
Thank you for all your work on ME, Dr Younger, and thanks also to ME Research UK for funding this very exciting research. Thank goodness for people like you who are actually looking at potentially helpful biomedical studies, rather than the useless and often harmful psychosocial rubbish that’s been thrust upon us for decades, especially in the UK, but also in other countries. Even if this particular study doesn’t show results in ME patients, at least we know we’re finally emerging from years of funding being wasted on utterly inappropriate and pointless behavioural studies, the publication of which only serves to further the careers of those still cleaving to the wholly discredited biopsychosocial model of ME and which has been no help whatsoever in finding a treatment for many millions of ME sufferers around the globe. Wishing you the very best of luck with this.
If the scans do indeed show leukocytes in the brain please consider the wider picture - what sorts of other cells and medications are passing through the blood brain barrier. For example, ME pateints are sensitive to medications. Could it be that medications not meant to enter the brain are passing through the barrier leading to the medication intolerance issues that are seen in ME.
You're giving a lot of people hope. As you mentioned, proving the hypothesis could be beneficial for sufferers of many different diseases. Thank you for sharing the journey!
It's 2am in my part of the world, but I'm wide awake because ... ME/CFS 🙄 Great opportunity to watch this update. I think the BBB idea makes a lot of sense & I'll be interested to see what happens when you put the first ME patient through the test. Best wishes from Melbourne Australia 😊
Thank you for keeping me updated, even though I couldn’t be a part of the study only because I had the original Covid-19 virus. I’m still very interested in what you will find. I’ve been on naltrexone 4.5 mg. for pain for the last 9 months with the initial titrated dose in the beginning, and I’ve cut my dose of gabapentin from 1800 mg. to 500 mg. daily which is huge. I have Dysautonomia/POTS/MVP/Sleep Apnea/ Fibromyalgia/Hypothyroidism and Interstitial Cystitis. I’m so much more clear headed and my pain is manageable now. Thank you for your input in our Fibromyalgia group in Huntsville, AL. probably about 10 years ago! I appreciated you coming to talk with our group!
Thank you for giving some hope. My window of opportunity is now very limited, I would love to see patient results on this as soon as possible. Of course the hypothesis might not be proved, I do understand that. 🤞
As a long covid patient I came to the same hypothesis of a compromised BBB on my own by simply monitoring my symptoms and the way my brain feels during (MCAS) flare-ups. I'm extremely interested in your research and I look forward to seeing the results once its run on a patient. Good luck!!
Thank you sm for the work that you're doing! Please test EDS patients if possible. I have EDS and brain fog is a huge issue and I know it's the case for many EDS patients
Do you have ME and/or any level of persisting “fatigue”/similar symptoms (even if it’s not PEM per se or sufficiently disabling to qualify for an ME diagnosis)? I heard ~30% of EDSers also have ME.
I too am coming up on my 20-year sickaversary with “long EBV”/ME! I was “mild” for many years then started to neurologically and autonomically spiral with Lyme/?? following a 2017 tick bite with erythemous rash and 30+ days of doxy. Have been mostly homebound/increasingly bedbound since climbing 4 flights of stairs too fast Dec 2021 … then have spiraled further (blue legs? Corpse feet anyone??) into mostly bedboundness since getting my SARS initiation in Nov 2022. I too have felt Younger’s theories 💡are astute and ON POINT … head and shoulders above (😅 no brain 🧠 punning intended!) a LOt of crusty old ableist ideas still getting too much traction and limelight about what is going on with our nervous systems. It feels like Jarred-up there w Ron Davis and Bhupesh Prusty on the metabolic/immune front and the Cornell experts/Betsy Keller and Systrom/Xiao on the cardiac front and more recently Iwasaki and Putrino-has failed to fall for the disgusting Freudianism that is STiLL tainting the research into re these diseases (ME particularly!). He understood immediately and early that this is not some Freudian hokum but a really nasty and very physical disease attacking us-particularly our brains!! That simply eludes current imaging/diagnostics! His background in neuroscience-the fact that unlike the other amazing researchers he was primed to focus on the BRAIN 🧠 as an organ?! And that finally someone is swooping in to innovate exactly the groundbreaking imaging we need-in ways to my knowledge no one else is yet doing really!!? Puts him right up there w Ron Davis in my book as someone we are SO depending on!! I hope Ed Yong writes about this lab or at any rate that Jarred and all the research rock stars I mentioned above finally get the many millions of research 🔬 funding they’ve more than earned! This disease doubtless IS (in part) very LITERALLY “in our heads!” 😅 🧠 The fact that Jarred’s crew is working so hard to FINALLY figure out exactly HoW?! Sticks chills in this probably irritated/inflamed spine of mine for hours!! 😂❤🎉
Interesting! A question: what if the leukocytes entered during a infection and caused a prevailing inflammatory infection in the CNS but the "gap" in the blood -brain barrier gets closed and no more leukocytes can enter. Isn't it so that the marked molecules during your experiment will stay in the blod vessels and no trace if them will be detected across the blood-brain barrier, i.e. within the brain?
@@arasharfa Yep - leukocytes live for only about 3 days. So if the gap was closed, we would expect symptoms to improve in a short amount of time. It is possible though that a gap opens or closes multiple times, which might cause periodic symptom flares. That has not been shown conclusively in humans, but it would fit how some people experience their symptoms over time. - Jarred Younger
@@youngerlabI wonder if that’s why every time I start doxycycline and diflucan (they work together so well!), it’s at the 3 day mark that suddenly I start feeling more functional and the brain fog starts lifting? Everything that’s helped me over the years seems to have a 3 day pattern.
TY so much for your continued research into ME. I’m so hoping this line of study leads to possible treatments from existing drugs. Standing by any time to volunteer my leukocytes for your ME cohort!
Will you be inducing PEM in the person with MECFS to increase the chance of getting a signal? I suspect that their are many people who would stay at a low level for the first scan at 24 hours... but then inducing PEM with aerobic exercise (for example) would show a stark contrast that might be delayed. Testers are less likely to have PEM when using low-dose nicotine patches. It would be interesting to see a scan done with and without NP.
Thank you so much for your dedication and providing these interesting updates. Do you know if there is any connection to gut permeability? I've read that leaky gut can lead to leaky BBB. My gut health seemed to drive most of my fibromyalgia (due to undiagnosed H.Pylori for 20 years) and as I've healed my gut, I feel better all round. Most of my brain and neurological symptoms, including central sensitisation, anxiety and depression have settled right down now thankfully, but it relies on avoiding many foods that flare it all up.
Yes, 😢, so! true ! I'm. Lc, l Lyme, celiac, mold injured , vac injured 3x.. now w multiple symptoms like fibro, me/cfs.. I follow all these top Drs , also tess falor, Dr Sabine Hazam (cal gi) + now traditional med failing us(see 10 Drs here, no clue) must heal the gut w gut map test, food sensitivity, not the massive band aid antibiotics, pharma pushes 🙏❤❤😻
Cool science! I'm wondering if MCS-patients could make the scan light up in the brain. Because if chemicals (I'm assuming that's the problem, at least it seems to be for me going by the head pains paint fumes and other things cause) go through the BBB, would leukocytes do the same?
Currently I am in “remission “ from Chronic Myelogenous Leukemia and suffering horribly with Fibromyalgia. I was sent to Rheumatology who for one year have not bothered to do blood tests. However I found out CML can cross the blood/brain barrier. I’ve known that since my diagnosis December, 2000. I also recently found in my records that in 2002 I was found positive for something called HLA-2B but it wasn’t mentioned ( I think because I wasn’t meant to live this long) I am 66. I’m at a loss. Where are you going with your studies? Do you have ANY connections in the Massachusetts???
Wow, that sounds exciting! 3 months has past, so I presume things got held up. Understandable with such experimental ideas. Do you know if you are any closer to getting an ME/CFS patient in as a study participant?
I suspect that Herpes Zoster virus hiding in my brain is causing my fibromyalgia. I asked many doctors to prescribe Valacyclovir but they give no more than 10 days prescription. A real struggle because I travel overseas and get acyclovir for months supply and my symptoms and pain gets controlled once I run out of medication within a week I’m back to the crushing pain, vertigo, fatigue and fibromyalgia. 😭😭😭
Is there any risk with the radiolabeled leukocytes (or any daughter products) once/if they accumulate in the brain during this experiment? Really ineresting, looking forward to more. Thank you!
I'm so grateful for your perseverance, Dr. Younger. As a severe M.E sufferer, you give me a sense of hope which makes the illness easier to live with. 🙏
I second this!!!! (If only he knew he’s been my boyfriend for a good 2 years now!! 😅)
Thank you for all of your efforts Jarred Younger!
Thank you for all your work on ME, Dr Younger, and thanks also to ME Research UK for funding this very exciting research. Thank goodness for people like you who are actually looking at potentially helpful biomedical studies, rather than the useless and often harmful psychosocial rubbish that’s been thrust upon us for decades, especially in the UK, but also in other countries. Even if this particular study doesn’t show results in ME patients, at least we know we’re finally emerging from years of funding being wasted on utterly inappropriate and pointless behavioural studies, the publication of which only serves to further the careers of those still cleaving to the wholly discredited biopsychosocial model of ME and which has been no help whatsoever in finding a treatment for many millions of ME sufferers around the globe.
Wishing you the very best of luck with this.
I really wish fibromyalgia would move in the same direction. Grateful for researchers like Dr. Younger!
That’s really exciting news, I can’t wait for you to run your first ME/CFS patient. Those PET scan images are really cool 😎
If the scans do indeed show leukocytes in the brain please consider the wider picture - what sorts of other cells and medications are passing through the blood brain barrier. For example, ME pateints are sensitive to medications. Could it be that medications not meant to enter the brain are passing through the barrier leading to the medication intolerance issues that are seen in ME.
You're giving a lot of people hope. As you mentioned, proving the hypothesis could be beneficial for sufferers of many different diseases. Thank you for sharing the journey!
It's 2am in my part of the world, but I'm wide awake because ... ME/CFS 🙄 Great opportunity to watch this update. I think the BBB idea makes a lot of sense & I'll be interested to see what happens when you put the first ME patient through the test. Best wishes from Melbourne Australia 😊
Thanks! - Jarred Younger
Amazing project gives some hopes to the CFS community
Any results on cfs patient scans ?
Thank you for keeping me updated, even though I couldn’t be a part of the study only because I had the original Covid-19 virus. I’m still very interested in what you will find. I’ve been on naltrexone 4.5 mg. for pain for the last 9 months with the initial titrated dose in the beginning, and I’ve cut my dose of gabapentin from 1800 mg. to 500 mg. daily which is huge. I have Dysautonomia/POTS/MVP/Sleep Apnea/ Fibromyalgia/Hypothyroidism and Interstitial Cystitis. I’m so much more clear headed and my pain is manageable now. Thank you for your input in our Fibromyalgia group in Huntsville, AL. probably about 10 years ago! I appreciated you coming to talk with our group!
Thank you for giving some hope. My window of opportunity is now very limited, I would love to see patient results on this as soon as possible. Of course the hypothesis might not be proved, I do understand that. 🤞
As a long covid patient I came to the same hypothesis of a compromised BBB on my own by simply monitoring my symptoms and the way my brain feels during (MCAS) flare-ups. I'm extremely interested in your research and I look forward to seeing the results once its run on a patient. Good luck!!
Same w me❤
Thank you sm for the work that you're doing!
Please test EDS patients if possible. I have EDS and brain fog is a huge issue and I know it's the case for many EDS patients
Do you have ME and/or any level of persisting “fatigue”/similar symptoms (even if it’s not PEM per se or sufficiently disabling to qualify for an ME diagnosis)? I heard ~30% of EDSers also have ME.
This makes so much sense to me. I’d love to participate as I’ve had ME/CFS for decades.
I too am coming up on my 20-year sickaversary with “long EBV”/ME! I was “mild” for many years then started to neurologically and autonomically spiral with Lyme/?? following a 2017 tick bite with erythemous rash and 30+ days of doxy. Have been mostly homebound/increasingly bedbound since climbing 4 flights of stairs too fast Dec 2021 … then have spiraled further (blue legs? Corpse feet anyone??) into mostly bedboundness since getting my SARS initiation in Nov 2022.
I too have felt Younger’s theories 💡are astute and ON POINT … head and shoulders above (😅 no brain 🧠 punning intended!) a LOt of crusty old ableist ideas still getting too much traction and limelight about what is going on with our nervous systems.
It feels like Jarred-up there w Ron Davis and Bhupesh Prusty on the metabolic/immune front and the Cornell experts/Betsy Keller and Systrom/Xiao on the cardiac front and more recently Iwasaki and Putrino-has failed to fall for the disgusting Freudianism that is STiLL tainting the research into re these diseases (ME particularly!).
He understood immediately and early that this is not some Freudian hokum but a really nasty and very physical disease attacking us-particularly our brains!! That simply eludes current imaging/diagnostics!
His background in neuroscience-the fact that unlike the other amazing researchers he was primed to focus on the BRAIN 🧠 as an organ?!
And that finally someone is swooping in to innovate exactly the groundbreaking imaging we need-in ways to my knowledge no one else is yet doing really!!? Puts him right up there w Ron Davis in my book as someone we are SO depending on!!
I hope Ed Yong writes about this lab or at any rate that Jarred and all the research rock stars I mentioned above finally get the many millions of research 🔬 funding they’ve more than earned!
This disease doubtless IS (in part) very LITERALLY “in our heads!” 😅 🧠
The fact that Jarred’s crew is working so hard to FINALLY figure out exactly HoW?! Sticks chills in this probably irritated/inflamed spine of mine for hours!! 😂❤🎉
thank you for making this video, cant wait for the results
You are a breath of fresh air. Thank you!!!
You are one of a handful of researchers that I agree with and trust.
I have ME/CFS and I would love to participate in a study like that.
Thank you for your persistence Dr. Younger.
Thank you Dr. Y!!! ❤❤❤❤
Very exciting news and information!!!
Wonderful to hear this is under way and best of luck for successful results!
Interesting!
A question: what if the leukocytes entered during a infection and caused a prevailing inflammatory infection in the CNS but the "gap" in the blood -brain barrier gets closed and no more leukocytes can enter. Isn't it so that the marked molecules during your experiment will stay in the blod vessels and no trace if them will be detected across the blood-brain barrier, i.e. within the brain?
the lifespan of leukocytes is not very long, so if you have a chronic condition there has to be a flow of leukocytes into the brain.
@@arasharfa Yep - leukocytes live for only about 3 days. So if the gap was closed, we would expect symptoms to improve in a short amount of time. It is possible though that a gap opens or closes multiple times, which might cause periodic symptom flares. That has not been shown conclusively in humans, but it would fit how some people experience their symptoms over time. - Jarred Younger
@@youngerlabI wonder if that’s why every time I start doxycycline and diflucan (they work together so well!), it’s at the 3 day mark that suddenly I start feeling more functional and the brain fog starts lifting? Everything that’s helped me over the years seems to have a 3 day pattern.
I’ve had my scan!
TY so much for your continued research into ME. I’m so hoping this line of study leads to possible treatments from existing drugs. Standing by any time to volunteer my leukocytes for your ME cohort!
Thank you !!! I feel hopeful ❤
Thank you from Ukraine!
I would love to hear your thoughts on the new nature article that found malfunctioning BBB in long covid patients!
Will you be inducing PEM in the person with MECFS to increase the chance of getting a signal? I suspect that their are many people who would stay at a low level for the first scan at 24 hours... but then inducing PEM with aerobic exercise (for example) would show a stark contrast that might be delayed.
Testers are less likely to have PEM when using low-dose nicotine patches. It would be interesting to see a scan done with and without NP.
Hi I definitely would take part . I have cfsme for 20years.
Yes, have data to support, and yes, my theory also last decade to explain the neuroinflammation in PVS. (Post Viral Syndromes).
Thank you for your work. So much help needed!
I am really grateful for these videos and for all the efforts you and your team are doing!!
Looking forward to hearing results!
Thank you so much for your work, and for sharing the nitty-gritty of what it's like to do such research.
Excellent. Thank you for such a comprehensive yet simple explanation 😊
Thank you so much for your dedication and providing these interesting updates.
Do you know if there is any connection to gut permeability? I've read that leaky gut can lead to leaky BBB. My gut health seemed to drive most of my fibromyalgia (due to undiagnosed H.Pylori for 20 years) and as I've healed my gut, I feel better all round. Most of my brain and neurological symptoms, including central sensitisation, anxiety and depression have settled right down now thankfully, but it relies on avoiding many foods that flare it all up.
Wow I have a similar story !
Yes, 😢, so! true ! I'm. Lc, l Lyme, celiac, mold injured , vac injured 3x.. now w multiple symptoms like fibro, me/cfs.. I follow all these top Drs , also tess falor, Dr Sabine Hazam (cal gi) + now traditional med failing us(see 10 Drs here, no clue) must heal the gut w gut map test, food sensitivity, not the massive band aid antibiotics, pharma pushes 🙏❤❤😻
This is fascinating! Looking forward to seeing the results
I remember reading that sulodoxide was trialed on Long COVID patients with endothelial permeability and it improved their symptoms.
Thank You for the update!
Cool science! I'm wondering if MCS-patients could make the scan light up in the brain. Because if chemicals (I'm assuming that's the problem, at least it seems to be for me going by the head pains paint fumes and other things cause) go through the BBB, would leukocytes do the same?
Really amazing.
Yay! Good luck.
The pet tracer used with leukocytes, how dangerous is it? Where does it fall on the elemental chart?
Currently I am in “remission “ from Chronic Myelogenous Leukemia and suffering horribly with Fibromyalgia.
I was sent to Rheumatology who for one year have not bothered to do blood tests. However I found out CML can cross the blood/brain barrier. I’ve known that since my diagnosis December, 2000. I also recently found in my records that in 2002 I was found positive for something called HLA-2B but it wasn’t mentioned ( I think because I wasn’t meant to live this long) I am 66. I’m at a loss. Where are you going with your studies? Do you have ANY connections in the Massachusetts???
Will you have autonomic symotoms??? Or cardiac symotoms
Wow, that sounds exciting! 3 months has past, so I presume things got held up. Understandable with such experimental ideas.
Do you know if you are any closer to getting an ME/CFS patient in as a study participant?
I suspect that Herpes Zoster virus hiding in my brain is causing my fibromyalgia. I asked many doctors to prescribe Valacyclovir but they give no more than 10 days prescription. A real struggle because I travel overseas and get acyclovir for months supply and my symptoms and pain gets controlled once I run out of medication within a week I’m back to the crushing pain, vertigo, fatigue and fibromyalgia. 😭😭😭
my significant other has low bkood flow from small vessel disease. subsribed
Thank you for everything; I appreciate the explanations, too. I invited the wrong comrades, again.
🤞🤞🤞🤞🤞🤞🤞
Is there any risk with the radiolabeled leukocytes (or any daughter products) once/if they accumulate in the brain during this experiment?
Really ineresting, looking forward to more. Thank you!