I'm so glad you and your team are pushing the boundaries to ease the pain of people suffering from these insideous conditions. Keep on keeping on, our hopes reside with people like you, who share your endeavours, and not the medical mainstream who push back on things they do not, cannot and refuse to understand.
There seem to be so many people suffering chronically. All this work is sorely needed. Keep sharing those stories of what does and what does not work for you! Keep learning.
Thank you so much. It's so important to run clinical trials, as that's the only way we can actually know what may work and what may not. I appreciate your updates.
Thank you!! Hopefully breakthroughs & treatment for cvd long haul & the vccn regarding cognitive issues will eventually be found. This can’t be swept under the rug.
Yes, worth the research from my experience. I took high-quality mushrooms 2-3 times years ago when I first became sick in the '90s with pain, fatigue, sleep disorder, etc. I felt no pain and had normal energy. I should have tried micro-dosing when I had access. I would love to take them on occasion just to have a break from my unrelenting pain and fatigue. I can't wait to hear the results! Good luck!
Hello Dr Younger, I have been using Curcuming (with BioPerine) and it help me with Fibromyalgia and ME/CFS (i have severe to very severe level). The dosage is similar to what you were you using in your trial for GWI. Here a list of other molecules taken daily that help me: -CBD -Coenzyme Q10 -Taurine -Massive dosage of complex B -Lipoic Acid -Acetyl L-Carnitine -High dosage Vitamin E -Cherry Tart Supplement What I discovered is that only one component will not work. I need to have what I called a critical mass before seeing any tangible beneficial effects. Thanks for all your hard work.
This sounds so exciting! It would be so wonderful to have something for fibro other than opioids and gabapentin! Hopefully I'll survive long enough to see the results of your studies.
I've finally found a Russian Dr. in Canada. His understanding and approach is amazing. I'm in a clinical trial where he injects 💉 200 needles from my tail bone/hips, right up to the base of my skull 💀. The process takes about 5 hours but I can walk again in moderation after many surgeries and bed bound off and on for 20 years. He's usinga long acting freezing that doesn't really do much other than get me thru the pain to come...some steroid,not much. The majick is the horse tranquilizer K E T A M I N E. ( botox sort of worked for 4 years until suddenly on day it had migrated to my legs. Instant muscle loss,massive fluid retention affecting fluid around my heart. SCAREY)!!!! Two years in. 200 shots giving me 4 to 6 months of mobility and....80% less brain fog!!! 😊❤ Sorry I write so much but it is my passion to help when I can. 🕊 🕊 🕊
There's a group of LC/ME pts who don't do well with VNS. Include myself in this. SGB ruined me, using TENS, breathwork all triggers worsening symptoms. I know several people like this.
I am several years ahead of you. I am a Gulf War Veteran and have been taking curcumin, stinging nettle and reversatrol for years. If you need any help or advice let me know. I am only joking. Thank you for all you do.
Macrodosing of psilocybin (or any other psychoactive substance) can absolutely be a huge mast cell trigger, with MCAS consequences that can last well beyond the trip. I hope the patients in that study will be screened for MCAS ahead of time.
Is the protocol, or reference, your can share for stimulating the vagus nerve non-invasively? Unfortunately, there is a whole industry of self-help type books out there claiming specific breathing strategies stimulate the vagus nerve that appear questionable.
Hi Dr Younger - there's a new episode of Matt Kaeberlein's Optispan podcast out where he interviews psychiatrist Jon Berner. Dr Berner uses a combination of rapamycin and ketamine for treatment resistant depression, etc., says it works by altering microglial activation. The discussion is highly technical & covers a lot of ground.
It was only when I started using turmeric after heating I found it worked for me, taking capsules of powdered turmeric did nothing. Thank you for what your doing
True. We need those. I would like to try dementia Alzheimer cognitive enhancer drugs. I believe some think they could help. I’ve had those at a low level for years and now more often and more intense since ME. It’s hell. I’m going try to find those drugs online.
@@KidCity1985 Which ADHD drugs and which GLP-1 analogs are being used for cognitive issues? I'm actually fascinated in the ozempic type drugs. I'd never heard of that before.
I would like to ask you a question, you mentioned the use of curcuma. I would like toast you , what is the difference in turmeric. I have dermatomyositis with scalpinflammation which is extremely painful. Could curcuma be of any help in this?
Question: I thought with Fibromyalgia you would use baby bits instead of a regular full dose due to the sensitivity of the receptors. Less is best, initially?
There are many studies on Reishi, and many of them report positive effects in several conditions. But I did a small trial (around 10 people) orf Reishi for Gulf War Illness, and it wasn't helpful: pmc.ncbi.nlm.nih.gov/articles/PMC8037868/ That study is too small to make treatment decisions, but Reishi isn't in the top of my list of things to examine further. - Jarred Younger
Great! I think of bananas and dates having similar nutrients, including magnesium, potassium, and some of the B vitamins of interest with palpitations. I don't remember if they both have B12. I wonder if the polyphenols in the darker dates made the difference. -Jarred Younger
What are your thoughts on Sabine Hossenfelder's recent video about fraudulent scientific papers, where she mentions papers on Turmeric an Curcumin? The title is; These new scientific fraud cases worry me. Now also in material science.
Yeah I saw that. I didn't know about Dr. Aggarwal's work/misconduct and haven't read the curcumin and cancer research. I would have to read more about that story before commenting. There are over 25,000 scientific studies on curcumin. I wonder how many of those were inspired by now-retracted studies, show null results, and wasted time and money. That is why I run my own pilot studies before conducting larger trials. Curcumin had a nice dose-response relationship with my clinical outcomes (pain and fatigue) in my placebo-controlled pilot, and beat out the other botanicals I tried. So even if some of the foundational work in the literature is retracted, it doesn't matter as long as we design and interpret our own studies correctly. But, there is the larger issue you mention that we don't know how common and widespread the fraud problem is. We probably need to employ more scientific fraud sniffers using a combination of human and AI detection tools. - Jarred Younger
@@youngerlab I see the plant flavonoid Luteolin turned out to be a good anti inflammatory in the inflammation stage of acute Covid. It’s a big paper so I didn't read if it helps with Long Covid or not, but probably would help Study name: ‘Inhibitory Effect of Luteolin on Spike S1 Glycoprotein-Induced Inflammation in THP-1 Cells via the ER Stress-Inducing Calcium/CHOP/MAPK Pathway’
Es muy pero muy importante todo lo que Ud está haciendo Dr. Younger, mis respetos para Ud. Es un gran ser humano, estaré atenta para los resultados de sus ensayos sobre Fibromialgia,saludos cordiales y afectuosos desde Nicaragua 🇳🇮. bendiciones 🙏🏽
Yeah I should do a quick video on that. It is true they are commonly used interchangeably. But there are some differences in the CFS diagnosis tools versus ME/CFS. The popular CFS tool is the CDC/Fukuda criteria, which focuses on unrelenting fatigue. It casts a wide net that probably brings in many people with other, undiagnosed conditions. ME/CFS (e.g., the CCC or ICC criteria) has a higher bar that requires post-exertional malaise and more multi-system (e.g., neurological) involvement. I typically just say ME/CFS in the videos, but sometimes my head is in research/grant mode and I make the distinction. I don't write out what I'm going to say, so things slip in there. 🙂 - Jarred Younger
@@youngerlab thank you for responding! I'm still a bit confused: Aren't there cases of ME (or ME/CFS) diagnosis with the Fukuda criteria as well? I always just look at the criteria when I read research etc, because that makes more sense for me, since some (unfortunately) are trying to confuse results by mixing up the diagnosis names etc. I consider the use of the Fukuda criteria, but presenting the results as relevant to ME/CFS, to be willfull confusion.
Good question. :-) I struggled with that one because DXM can have a small effect on fibromyalgia pain via a couple of different actions. The acute effect is via NMDA antagonism. I would expect pain to go down for a while, but the NMDA effect seems to be tied to plasma levels of the drug, so it wears off in a few hours. The effect we are looking at with psilocybin is weeks after the dosing. - Jarred Younger
I have to admit, this is pretty disappointing. Most of us have been taking massive doses of curcumin, resveratrol and even psylocibin for decades. Vagus nerve stimulation is a common treatment option (that rarely works). Maybe I'm missing something, but why would you spend precious time running trials on commonly used, commercially OTC substances that have already proven to be ineffective anecdotally by millions of people and in other clinical trials for chronic illness? What is the rationale here?
Yep, exactly same remark..also, here in Europe nettle has such a "grandma's remedy" connotation that no serious scientist/doctor would dare to mingle with it. Will unsubscribe from this channel, nothing worth to expect
I'm finding resveratrol and vagus nerve stimulation mainly through humming and Breathwork helpful for symptom management, especially cognition. I guess it's different for everyone. Not a cure but it does make a difference. I take curcumin for knee pain. Works for that but no discernable effect on my cognition
I somewhat agree, but you sort-of answered you own question - these are compounds that are relatively easy and cheap to obtain, so easy and cheap to test and with a known safety profile. And just because you have some "anecdotes" about their effects, that doesn't mean they have been properly trialled for his specific end-points. I think curcumin has probably already been shown to be a mild anti-inflam that doesn't have much of a noticeable effect, but obviously psylocibin has been hard to study for a long time, thanks to the war on drugs. We're really only now characterising it across different targets (such as with work on treatment-resistant depression). But yeah, I've followed resveratrol through the life-extension saga and it's a bit odd to see it resurface in this context, and none of these compounds excite me much for this use-case.
I'm not sure if you have seen my other videos, but I do advanced neurological studies using high-risk protocols that are "first-in-person", and drugs that have never been used by a human before. They are very complex and take many years to navigate funding, regulatory, safety, etc., obstacles. Because it will take a long time before those efforts will translate into a useable treatment, I run a few trials of things that can be utilized now. They are just a part of what I do. There is no good clinical trial information on the treatments I try - the information is usually anecdotal or from small studies, and it is hard to know if proper formulation, source, dosage, dosing strategy, length of trial, etc., was used. It takes a clinical trial to know for sure whether or not it works. - Jarred Younger
@@youngerlab I understand. Apologies for the outburst. Please know that it comes from a place of desperation, as the suffering endured in these conditions is unbearable and beyond the comprehension of many. People don't get this disease until they GET this disease... You certainly don't owe us an explanation, so thank you for providing one. Please take my comment less on face value and more as an exasperated, unfiltered expression of the frustration and helplessness we collectively feel in the patient population. Certainly, outbursts like mine are not helping the situation, and I apologize for that. Nonetheless, my comment stands as a cry to the heavens in the long, dark night of suffering and despair that is our daily lives. Thank you for your efforts. Truly.
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I'm so glad you and your team are pushing the boundaries to ease the pain of people suffering from these insideous conditions.
Keep on keeping on, our hopes reside with people like you, who share your endeavours, and not the medical mainstream who push back on things they do not, cannot and refuse to understand.
Hi Dr. Younger, when can we expect updates on the PET scans in ME/CFS patients?
I'm curious to know if you have any updates on the zirconium-89 brain scans for ME/CFS? Thanks
Ty for your work and caring enough to put in the effort for our community
Thank you for all your hard work! We'll keep spreading the word.
There seem to be so many people suffering chronically. All this work is sorely needed. Keep sharing those stories of what does and what does not work for you! Keep learning.
Really appreciate your work Dr Younger. Looking forward to hearing more about Dextro Naltrexone.
Thank you so much. It's so important to run clinical trials, as that's the only way we can actually know what may work and what may not. I appreciate your updates.
I have been using the vagal tone stimulator called Truvaga and i have had positive results.
Thanks for sharing the name of the one you're using as I'm currently looking into buying one.
These studies are so fascinating... please keep up posted!!
My brain fog thanks you for keeping your videos quiet, short, and simple. I just posted this to a cfs Reddit group.
Thanks for letting me know! - Jarred Younger
All the best for the grant writing!
Thank you!! Hopefully breakthroughs & treatment for cvd long haul & the vccn regarding cognitive issues will eventually be found. This can’t be swept under the rug.
Yes, worth the research from my experience. I took high-quality mushrooms 2-3 times years ago when I first became sick in the '90s with pain, fatigue, sleep disorder, etc. I felt no pain and had normal energy. I should have tried micro-dosing when I had access. I would love to take them on occasion just to have a break from my unrelenting pain and fatigue. I can't wait to hear the results! Good luck!
Thank you 😊
Welcome! - Jarred Younger
Hello Dr Younger, I have been using Curcuming (with BioPerine) and it help me with Fibromyalgia and ME/CFS (i have severe to very severe level). The dosage is similar to what you were you using in your trial for GWI.
Here a list of other molecules taken daily that help me:
-CBD
-Coenzyme Q10
-Taurine
-Massive dosage of complex B
-Lipoic Acid
-Acetyl L-Carnitine
-High dosage Vitamin E
-Cherry Tart Supplement
What I discovered is that only one component will not work. I need to have what I called a critical mass before seeing any tangible beneficial effects.
Thanks for all your hard work.
This sounds so exciting! It would be so wonderful to have something for fibro other than opioids and gabapentin! Hopefully I'll survive long enough to see the results of your studies.
I've finally found a Russian Dr. in Canada. His understanding and approach is amazing. I'm in a clinical trial where he injects 💉 200 needles from my tail bone/hips, right up to the base of my skull 💀. The process takes about 5 hours but I can walk again in moderation after many surgeries and bed bound off and on for 20 years. He's usinga long acting freezing that doesn't really do much other than get me thru the pain to come...some steroid,not much. The majick is the horse tranquilizer K E T A M I N E.
( botox sort of worked for 4 years until suddenly on day it had migrated to my legs. Instant muscle loss,massive fluid retention affecting fluid around my heart. SCAREY)!!!!
Two years in. 200 shots giving me 4 to 6 months of mobility and....80% less brain fog!!! 😊❤
Sorry I write so much but it is my passion to help when I can. 🕊 🕊 🕊
There's a group of LC/ME pts who don't do well with VNS. Include myself in this. SGB ruined me, using TENS, breathwork all triggers worsening symptoms. I know several people like this.
TENS was awful for my pain, made it worse
WOW! I can’t believe you have so many trials at the same time! Thank you! I hope you have amazing inspiration writing the proposals. ❤❤❤
Thanks. I'm glad it sounds like a large number, because the studies definitely keep me busy! 😀 - Jarred Younger
Ɓut he's working with others too
I am several years ahead of you. I am a Gulf War Veteran and have been taking curcumin, stinging nettle and reversatrol for years. If you need any help or advice let me know. I am only joking. Thank you for all you do.
Can you please talk more about the VNS trial and VNS in general? what is the protocol, device and specs are you using and why.
Thank you so much as always.
Thank you very much Dr Young fpr your novel approach. All I heard from CFS clinic is pacing.
Macrodosing of psilocybin (or any other psychoactive substance) can absolutely be a huge mast cell trigger, with MCAS consequences that can last well beyond the trip. I hope the patients in that study will be screened for MCAS ahead of time.
Good to know.
Is the protocol, or reference, your can share for stimulating the vagus nerve non-invasively? Unfortunately, there is a whole industry of self-help type books out there claiming specific breathing strategies stimulate the vagus nerve that appear questionable.
Hi Dr Younger - there's a new episode of Matt Kaeberlein's Optispan podcast out where he interviews psychiatrist Jon Berner. Dr Berner uses a combination of rapamycin and ketamine for treatment resistant depression, etc., says it works by altering microglial activation. The discussion is highly technical & covers a lot of ground.
It was only when I started using turmeric after heating I found it worked for me, taking capsules of powdered turmeric did nothing. Thank you for what your doing
@@utube271258 can you explain what the ‘heating’ was please?
Thank you so much Dr Younger. I have severe ME and feel like my immune system is overactive. Would those botanicals calm it down?
Yessur yessur yessur yessur yessur
Are there any substances in trials for depersonalization, cognitive problems, fatigue, and executive dysfunction?
ADHD drugs and the ozembic types drugs I've heard people are having success
I'm researching methalN blue (so) has good reviews, been around a long time🙏💕
True. We need those. I would like to try dementia Alzheimer cognitive enhancer drugs. I believe some think they could help.
I’ve had those at a low level for years and now more often and more intense since ME. It’s hell. I’m going try to find those drugs online.
@@KidCity1985 Which ADHD drugs and which GLP-1 analogs are being used for cognitive issues? I'm actually fascinated in the ozempic type drugs. I'd never heard of that before.
@@bizonc Which Alzheimer's cognitive enhancemer drugs are you interested in?
Love the vids
I would like to ask you a question, you mentioned the use of curcuma. I would like toast you , what is the difference in turmeric. I have dermatomyositis with scalpinflammation which is extremely painful. Could curcuma be of any help in this?
I have dermato as well. It may help but it is probably dose dependant.
Question: I thought with Fibromyalgia you would use baby bits instead of a regular full dose due to the sensitivity of the receptors. Less is best, initially?
I was wondering just how effective the Reisha mushroom was as compared to psilocybin. That would be interesting too. Thank you!
There are many studies on Reishi, and many of them report positive effects in several conditions. But I did a small trial (around 10 people) orf Reishi for Gulf War Illness, and it wasn't helpful: pmc.ncbi.nlm.nih.gov/articles/PMC8037868/ That study is too small to make treatment decisions, but Reishi isn't in the top of my list of things to examine further. - Jarred Younger
@@youngerlabthank you Jarred
I did parasympathetic stimulation on myself cause I worked in the medical field and for myself it didn’t help to be honest with my results.
Same, I tried TENS myself twice a day for a month, didn't notice significant results
Since eating 6 mejdoul dates per day my heart palpitations have resolved. Bananas did NOT resolve my heart palpitations
Great! I think of bananas and dates having similar nutrients, including magnesium, potassium, and some of the B vitamins of interest with palpitations. I don't remember if they both have B12. I wonder if the polyphenols in the darker dates made the difference. -Jarred Younger
So zero pharmaceutical or botanical trials on ME? That’s really sad
We need more ME trials. What the hell
Try methylene blue
What are your thoughts on Sabine Hossenfelder's recent video about fraudulent scientific papers, where she mentions papers on Turmeric an Curcumin?
The title is; These new scientific fraud cases worry me. Now also in material science.
Yeah I saw that. I didn't know about Dr. Aggarwal's work/misconduct and haven't read the curcumin and cancer research. I would have to read more about that story before commenting. There are over 25,000 scientific studies on curcumin. I wonder how many of those were inspired by now-retracted studies, show null results, and wasted time and money. That is why I run my own pilot studies before conducting larger trials. Curcumin had a nice dose-response relationship with my clinical outcomes (pain and fatigue) in my placebo-controlled pilot, and beat out the other botanicals I tried. So even if some of the foundational work in the literature is retracted, it doesn't matter as long as we design and interpret our own studies correctly. But, there is the larger issue you mention that we don't know how common and widespread the fraud problem is. We probably need to employ more scientific fraud sniffers using a combination of human and AI detection tools. - Jarred Younger
@@youngerlab I see the plant flavonoid Luteolin turned out to be a good anti inflammatory in the inflammation stage of acute Covid. It’s a big paper so I didn't read if it helps with Long Covid or not, but probably would help
Study name:
‘Inhibitory Effect of Luteolin on Spike S1 Glycoprotein-Induced Inflammation in THP-1 Cells via the ER Stress-Inducing Calcium/CHOP/MAPK Pathway’
Es muy pero muy importante todo lo que Ud está haciendo Dr. Younger, mis respetos para Ud. Es un gran ser humano, estaré atenta para los resultados de sus ensayos sobre Fibromialgia,saludos cordiales y afectuosos desde Nicaragua 🇳🇮. bendiciones 🙏🏽
Thank you for sharing!
Why do you say ME/CFS or CFS? Is CFS something different on its own?
Yeah I should do a quick video on that. It is true they are commonly used interchangeably. But there are some differences in the CFS diagnosis tools versus ME/CFS. The popular CFS tool is the CDC/Fukuda criteria, which focuses on unrelenting fatigue. It casts a wide net that probably brings in many people with other, undiagnosed conditions. ME/CFS (e.g., the CCC or ICC criteria) has a higher bar that requires post-exertional malaise and more multi-system (e.g., neurological) involvement. I typically just say ME/CFS in the videos, but sometimes my head is in research/grant mode and I make the distinction. I don't write out what I'm going to say, so things slip in there. 🙂 - Jarred Younger
@@youngerlab thank you for responding! I'm still a bit confused: Aren't there cases of ME (or ME/CFS) diagnosis with the Fukuda criteria as well? I always just look at the criteria when I read research etc, because that makes more sense for me, since some (unfortunately) are trying to confuse results by mixing up the diagnosis names etc. I consider the use of the Fukuda criteria, but presenting the results as relevant to ME/CFS, to be willfull confusion.
But how do you know the DXM doesn't help?
Good question. :-) I struggled with that one because DXM can have a small effect on fibromyalgia pain via a couple of different actions. The acute effect is via NMDA antagonism. I would expect pain to go down for a while, but the NMDA effect seems to be tied to plasma levels of the drug, so it wears off in a few hours. The effect we are looking at with psilocybin is weeks after the dosing. - Jarred Younger
@@youngerlabyes, the ldn area has mixed reviews+ titering is problematic
The mushrooms sound creapy to me.
Gotta be open minded. It may not be for everyone but I'm glad jarred is doing this
I have to admit, this is pretty disappointing. Most of us have been taking massive doses of curcumin, resveratrol and even psylocibin for decades. Vagus nerve stimulation is a common treatment option (that rarely works). Maybe I'm missing something, but why would you spend precious time running trials on commonly used, commercially OTC substances that have already proven to be ineffective anecdotally by millions of people and in other clinical trials for chronic illness? What is the rationale here?
Yep, exactly same remark..also, here in Europe nettle has such a "grandma's remedy" connotation that no serious scientist/doctor would dare to mingle with it. Will unsubscribe from this channel, nothing worth to expect
I'm finding resveratrol and vagus nerve stimulation mainly through humming and Breathwork helpful for symptom management, especially cognition. I guess it's different for everyone. Not a cure but it does make a difference. I take curcumin for knee pain. Works for that but no discernable effect on my cognition
I somewhat agree, but you sort-of answered you own question - these are compounds that are relatively easy and cheap to obtain, so easy and cheap to test and with a known safety profile. And just because you have some "anecdotes" about their effects, that doesn't mean they have been properly trialled for his specific end-points. I think curcumin has probably already been shown to be a mild anti-inflam that doesn't have much of a noticeable effect, but obviously psylocibin has been hard to study for a long time, thanks to the war on drugs. We're really only now characterising it across different targets (such as with work on treatment-resistant depression). But yeah, I've followed resveratrol through the life-extension saga and it's a bit odd to see it resurface in this context, and none of these compounds excite me much for this use-case.
I'm not sure if you have seen my other videos, but I do advanced neurological studies using high-risk protocols that are "first-in-person", and drugs that have never been used by a human before. They are very complex and take many years to navigate funding, regulatory, safety, etc., obstacles. Because it will take a long time before those efforts will translate into a useable treatment, I run a few trials of things that can be utilized now. They are just a part of what I do. There is no good clinical trial information on the treatments I try - the information is usually anecdotal or from small studies, and it is hard to know if proper formulation, source, dosage, dosing strategy, length of trial, etc., was used. It takes a clinical trial to know for sure whether or not it works. - Jarred Younger
@@youngerlab I understand. Apologies for the outburst. Please know that it comes from a place of desperation, as the suffering endured in these conditions is unbearable and beyond the comprehension of many. People don't get this disease until they GET this disease... You certainly don't owe us an explanation, so thank you for providing one. Please take my comment less on face value and more as an exasperated, unfiltered expression of the frustration and helplessness we collectively feel in the patient population. Certainly, outbursts like mine are not helping the situation, and I apologize for that. Nonetheless, my comment stands as a cry to the heavens in the long, dark night of suffering and despair that is our daily lives. Thank you for your efforts. Truly.