I suffer from ME since 2013, and I tried both LDN and PB. Of course everyone is different, I know people that improved a little under LDN but for me it came just with horrible side effects and no effects whereas PB helped me the most of all things I tried so far. I only tolerate the lowest dose of PB but my fatigue and PEM got better to the point that I no longer need a care giver which is a huge improvement in quality of life for me.
I’m really happy to hear they are testing PB. I’ve had ME/CFS for 12 years, and about 1.5 years ago I was diagnosed with Myasthenia Gravis as well. To my surprise, since I’ve been on PB for the MG symptoms, I’ve seen a big improvement in my ME/CFS. I can do a lot more before crashing, and if I do crash, it’s for a much shorter time and is much less severe. From what I understand, PB helps a subset of ME/CFS patients, but not all. It would be wonderful if PB becomes approved for ME/CFS patients.
Glad to hear about your experience. PB already can be prescribed off label. When my doctor prescribed it, the cost was minimal - I don’t recall whether my insurance covered it or it was just super cheap because it was generic. I haven’t started it because the dosing schedule was very difficult.
@@marcelguldemond2523 I think it’s different depending on where you live. I live in Canada, and I’ve since found out that your GP can prescribe up to 180 mg of pyridostigmine per day if you have POTS (which most people with ME/CFS have). There is a blood test that checks acetylcholine antibody levels, but it won’t tell you your actual acetylcholine levels. I understand that there are many other countries who allow small doses of PB without measuring levels first. If you do get the prescription, start very slowly because I understand it’s very unpleasant if you take more than what your body needs. If you can, I would recommend slowly trying it, just keep in mind that it doesn’t help everyone with ME/CFS.
Thanks so much for your updates! You give us hope. And you have a beautiful speaking voice - so important for those of us whose brains can't handle too much stimulation
Thank you very much. I live in South Africa with little medical support. I have struggled with Long Covid for four and a half years, my main symptom being dysautonomia. I have had very good results from LDN. I also watch my diet very carefully. I realized that my gastric relapses were due to certain foods. I recently went for Sacrocranial therapy and this has been life-changing in calming down my nervous system. I now do breathing exercises every morning and it helps to maintain the effects of the Sacrocranial therapy. I am still not out of the woods, but the daily difference in my quality of life is hopeful.
In the case of Gulf War Veterans with GWI, you want to decrease acetylcholinesterase levels. Maybe that's why an Australian study found that Australian Gulf War Veterans have calcium ion channel inhibition. This could be the CNS way of countering the increase in acetylcholine by blocking calcium ion channels to slow down the release of acetylcholine into the synaptic cleft.
Will be interesting to see what the LDN & Mestinon trial turns up. Looking forward to hearing more about your latest project too 😊 Cheers from Melbourne Australia
Has anyone investigated the effects of Ephedrine and Metarminol? As a sufferer of ME/CFS for 6 years, I noticed my ME/CFS symptoms had disappeared after a dental surgery where these drugs were used. My mind was clear, I had normal energy levels, and even my family commented that I seemed my old self and my posture had changed”. Upon comparing the anaesthetic charts, I found that the only difference was the inclusion of ephedrine and metarminol in one of the surgeries. Unfortunately, the next day my ME/CFS symptoms returned. This observation may be worth exploring further in research.
@@oliverbird6914 I think this should be looked into further especially in the cure/relief for ME/CFS and long Covid. I know you can’t prescribe patients these drugs but there must be something else that works in a similar way that could be developed. After been given these drugs it didn’t feel like “ oh this makes me feel better” it felt like I was my old normal self again. I wish I could explain it in person as writing it down doesn’t do it justice
Someone on here said they have been improving as months pass on PB/LDN but the ephedrine and Met it was instant and I felt cured. (The metriomal was only 0.5) so may been the ephedrine which worked
I'm very interested in PB but it's assumed involvement in the pathogenesis of GWI makes me a bit cautious. In animal models it's shown to interact with the insect repellent permethrin (which itself is an AChE inhibitor), experimentally induced stress or even supplemental PEA leading to persistent pro-inflammatory immunological changes. Also it can exacerbate the neuroinflammatory response to LPS in animal models. For me this raises questions about the long-term-safety of PB in patients with complex illnesses, I'd like to see adressed.
Yes you might know I do lots of GWI research, and that is a reason behind me saying I wouldn't be comfortable testing PB myself. It is interesting to me, though, that I am seeing low levels of choline in the brain of GWI participants. It is *possible* that the original problem was an AChE inhibitor, but the acute increase of ACh leads to a long-term decrease of ACh. I am not sure because my scan doesn't measure brain ACh directly, only choline. It is possible the research team will not take individuals with GWI in this study even if they otherwise meet the criteria. - Jarred Younger
To increase acetylcholine instead of unnatural enzyme intervention, might as well use nontoxic piracetam which increases choline usage, together with choline supp.
Thank you for these videos. I need hope. Just wish I had a real doc that would try to relieve suffering. We wouldn’t let a dog live with this wretched illness. Sorry to be so dark. I appreciate you doing the work and bringing this out on UA-cam.
Euthanasia would be considered the ethical choice for a dog, so you are correct, but this attitude serves no good purpose. Doctors don’t have the answers, so looking outside of yourself only leads to more unhealthy thoughts. There is a lot of room for improvement of experience by tending to the only thing we have some control over while we wait for drugs. Therapy gives me an appropriate place to be heard by a pro who will care, but not be burdened like others might by our heavy load. My isolation is no longer a source of pain now that I accept that I need that space to rest and find my best in any given hour. I found grace in acceptance that I must live with this illness when I got cancer. Seek your peace and simple joys to improve your experience within yourself. I ruined 35 years of my life experience being upset about my illness, but I had no such feelings about having stage 3 lymphoma. It helped me shift my attitude about being sick. That shift has helped me find more peace as I navigate whatever my body may do. I wish you the kindness and understanding that we all need while we wait for a new hope.
I was excited to hear about this when I saw the OMF had made the announcement. I thought all the way back in 2010 that there would be a cure in 10 years. I guess the joke is on me….going to take a lot longer. But I’m so pleased to see it has started. Good luck with the monster of a deadline and please look after your health.
Hello. I saw you were involved in the youtube discussion when OMF announced the trial a few months ago. Yes I am glad trials are moving forward, and I am pushing for more and faster studies. I agree it has been too long for substantive advancements. Thanks re: the deadline -- it is going well so far! - Jarred Younger
Glad to know you're aware of David Systrom. I was very impressed when I saw him in some videos where he shared his evidence of blood not getting to the brain sufficiently, which I have often felt was happening. Guys like y'all are going to figure this stuff out.
Thank you so much for these videos. Do you have any thoughts on using JAK 1 inhibitors short-term, in an attempt to reset the innate immune system? Thanks.
Thanks for the update Jared! I have ME/CFS for 12 years now, caused by transplant. I assume I wouldn't be eligible as I am taking immunosuppressive drugs?
It's a good question. That class of drugs is not mentioned in the exclusions clinicaltrials.gov/study/NCT06366724#participation-criteria , but there is a statement that a person can be excluded if the investigator believes that a drug makes them unsuitable for the study. So, it isn't clear and will probably be up to Dr. Systrom. - Jarred Younger
A Dr William Walsh who wrote Nutrient Power talks about how any added folate can give some people suicidal ideation. I don't tolerate the methyl dilate. I'm also supposed to take hydroxy and adeno B12 versus methyl B12. So it's my understanding the methyls only work for some of us with MTHFR issues.
@@torim5485 I found methycobalamin pretty much instantly available, where I was struggling to process cyanocobalamin. I wouldn't go near folate without sufficient available B12 as it had a nasty effect on my already low dopamine level. I found extra thiamine to be especially beneficial in terms of energy metabolism for proper eye focus etc.
Thanks again Dr Younger. I recently watched Dr Systrom's talk at a recent ME conference, where he talked about the prevalence of small fiber neuropathy in CFS and LC, and its possible connection to dysautonomia. As someone with SFN and dysautonomia are some of my main symptoms of LC, I'm eager to see their results. Hopefully the various subtypes of CFS that you talked about before don't get in the way of their results.
Have you heard or know about any studies that inspect nicotine for me/CFS? It seems that anecdotally it helps some people. When I tried nicotine patches though, I had terrible nausea, might be because the dose was too high... But I am curious if there is any base to keep trying...
I have never heard of a nicotine and ME/CFS study. I just did a check on pubmed.gov and nothing came up. There are many studies on nicotine and fatigue in general, but not ME or CFS. I have only seen some online discussions. So I don't have good sources of info, but related work has been discussed by Cort Johnson: www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ . I don't know if it is useful or not - I would have to see a clinical trial. - Jarred Younger
I think what you are forgetting is that a lot of people that have ME/CFS also have issues with TOO MUCH HISTAMINE and histamine is a CHOLINERGIC STIMULANT that activates the parasympathetic nervous system. Since PB potentiates many of the effects of histamine, I don't think this is a good choice despite that it is effective in patients with MG. Also anyone that has IBS-D will not be a candidate for this treatment.
In my case, genetically I have already high histamine and less tools to reduce it. I have IBS and OI. I use PB and LDN. And I do need DPP4 enzym to compensate for the stomach reaction and had to build up extremely slowly. But I am so glad to be walking the stairs again. LDN works great for pain and PEM.
I agree with those points. I can't remember if I mentioned in the video that I wouldn't be comfortable using PB in any of my trials. I think there are too many contraindications. I have some concerns that side effects could be a problem in the PB and combo groups, but maybe the research team has some interesting preliminary data that mitigates the issue. - Jarred Younger
If only my doctor would try something. I’m willing to try many things. I hope I don’t do off myself before a treatment comes. I’m not strong enough to make it the long term.
Had since 1988 it surely is hell. Have tried so many things thru the years on my own. So many times have thought of just throwing in the towel. They never took us serious way back in the day laughed at us. Said was just depression. Like who wouldn't be depressed with this?? Said was mostly female thing so never donated any money for research for us. As usual. It's just mainly women so who cares? Only because of covid they are now doing studies way to late for many of us. We got old waiting for help.
@@jewelleryaddict that’s sad and just crazy. Yes of course who wouldn’t have profound sadness or depression. It needs the money of MS and similar diseases affecting similar amounts of people. What a waste of opportunity over the decades. That’s frustrating trying so many things and no help.
Thank you Dr Younger. All the best with that monster deadline. If you have a chance, I have a couple of questions: 1) Someone who works in the analysis lab at my local hospital said that their current CRP test is the same as what you called hs-CRP in your video about which basic blood tests to ask for. Do you have any idea whether this is actually a thing, or should I assume they may not fully appreciate the importance of the difference even though it's their profession (and not mine)? My GP didn't seem to know the difference. I have found a list in the local language/their work language which does include both of these tests separately but is undated. The lab person also said they don't t do the plasma viscosity test in this hospital as that's an older version of this other test they do, the Total Protein test. Sounds reasonable, I guess, but I'm wondering if this is a development you're aware of, again just to make sure they're not confusing something because they're not specialists in this area. I'm trying to get this as right as I can before going back to my GP, who thought she could only request one or two of the tests on your list in our system (partly a case of lost in translation, partly of lack of familiarity). 2) I was going through your old videos, right back to the first Q&As, in search of one where you talk about the diagnostic criteria for ME/CFS. I guess you use the standard IOM/CDC ones, but what I read in the Internal Consensus Criteria from 2011 I think it was, seem much more relevant to my symptom package. So I"m wondering what your opinion about this ICC might be. Is this something you've discussed anywhere here? Sorry if I missed an obvious video title as I looked through the lot.
If I request CRP at my hospital, I will get a pretty crude measure with a floor somewhere around 5mg/L. To get the sensitivity I want, I have to specify the hs-CRP test. The regular CRP is fine, but it doesn't provide any info between 0 and 5mg/L, and I believe that significant inflammation can occur in that range. It is possible that other hospitals, especially in other countries, may provide only one or the other and refer to it as CRP. So, the name may not be helpful. The way to know the difference is to see the minimum value the test can detect, which will be around 0.3mg/L for hs-CRP. Regarding plasma viscosity, I cannot think if how Total Protein would serve as a replacement for plasma viscosity. If you are having trouble getting it ordered, you will be fine with just the CRP and ESR. Plasma viscosity should correlate with those other tests fairly closely. I shifted my case criteria over time as more information on the various definitions became available. In my new proposed trials, I will be using ICC, thought I actually assess all the case definitions in case someone wanted to run analyses using another definition. - Jarred Younger
Hi Doc, you mentioned some have symptoms of withdrawal on LDN. I’m getting off suboxone to switch to LDN. Do you think that makes me more likely to get those withdrawal symptoms even if I wait awhile? Also do you know names of microglial modulators that don’t affect MU-Opioid receptors? Not trying to make you my doc, mostly curious about question 1 above. Thank you
CFS is not a disease, but a very heterogenous group of people that just happen to share some complaints. So with many treatments some may respond well while others will respond badly.
Opioid receptors are activated at a baseline so giving antagonists crashes that. Seems like everybody would be affected, and sounds like a pretty stupid idea to use it for cfs off hand
I agree with the comment that CFS contains people with differing pathologies. As one example, some people seem to have an exquisitely sensitive endogenous opioid system that can't handle the LDN mu-opioid antagonism. Those people will get opioid withdrawal symptoms - anxiety, maybe slight runny nose and goosebumps on the skin, insomnia, agitation, and a few other symptoms. These individuals would have to take a lower dose of LDN, or maybe they can't use it at all. For those individuals, a microglia modulator that doesn't affect mu-opioid receptors will be needed. That is why we want to have several microglia modulators available. - Jarred Younger
PB would be dangerous for Gulf War who have been exposed to chemical nerve agent sarin gas. Sarin gas already inhibits acetylcholinesterase, so by introducing PB to treat a GWV with CFS/ME could increase acetylcholine to a dangerous to deadly level.
SGBs are powerful and interesting. I need to see the 2022 authors show efficacy with a larger group to make sure the results in the first two cases weren't flukes. I think it could be useful in ME/CFS cases where there is abnormal sympathetic drive, anxiety, pain, or orthostatic intolerance. It is on my short list of interventions to try, but I am working on vagus nerve stimulation first. - Jarred Younger
How does the feature article in New Scientist, 28 September, p 32 relate to ME/CFS in general and more specifically your thoughts on overactivated microglia cells? Do you know if their tesearch also covers ME/CFS?
Dr. Ponting at the University of Edinburg does great work. I haven't been able to read the preprint yet, but I will look at it soon. It is available here: www.medrxiv.org/content/10.1101/2024.08.26.24312606v2 - Jarred Younger
I was lucky enough to see Dr. Systrom in 2019, who performed a CPET and found insufficient aerobic preload, and prescribed me a high-sodium diet and pyridostigmine, with good results. I had tried LDN already with no results. I wish I lived in the Boston area to be able to participate in this study but I did sign up in the OMF registry.
@@youngerlab Cows with Fusarium Vomitoxin (deoxynivalenol) poisoning go to a salt lick 100 times more than non-contaminated animals. Are you checking the MSH levels of your participants? If not, I suggest you start.
What dosage were you started on? It is really important that patients with ME/CFS are started on a very low dose, building up slowly. Many people are started on 1.5mg or even higher. My daughter started on 0.5mg per day and took months to build up to 4.5mg. Each increase knocked her around for a few days but then settled down to produce a significant improvement.
Hasn't LDN already been proven to help SOME people? (Griffith team in QLD, Australia)? I thought the reverse LDN was something you were looking at testing, because normal LDN does not help a lot of people with ME/CFS.?
Please - this is a small point, but you are a smart guy who show not speak like a sports announcer. People cannot live or work "out of" a place, only in or at a place. Nothing can be "based out of" (though airline crews "fly out of" a given airport) or, as another common internet error has it, "based off" of something. If a person has a base, it is in that place (or, in certain cases, at a site) or it is not based there at all. If the base is out of the named place, it is not in that place. Similarly (taking up a related error that has taken on a life of its own on the web), if one thing is a basis for another - that is, if the former thing has the latter thing as a base in the normal senses - it must be based on that thing, or have a basis in that thing, or the one thing might be a basis for the other thing, or, in an alternative sense, it might be a base for that thing. What cannot happen, despite what so many people have been saying lately, is that one thing is "based off" another. Indeed, this phrasing directly contradicts the sense the speaker hopes to convey. The whole point of asserting the the logical or mechanical senses of base and basis is to convey the relationship of the things in question in which there is an ordered nature that supports, underlies, or the like. Choosing the right term vastly improves the clarity of the relationship. We are losing in English-speaking societies the sense of why we use this or that term in sentences, and how the different options for everyday parts of speech in the class of connectors, placeholders, comparators, indexicals/referents - all the little words that stitch together our sentences - differ from one another and determine their meanings. This is less a case of the internet being to blame than of our misplaced societal priorities in funding education. We have not taught English grammar and usage as a matter in American schools since the turn of the eighties (there were similar faddish education cuts in other English-speaking countries in that general time frame), when another round of cuts to federal education budgets cut a number of traditionally taught subjects on flimsy grounds. Our society has paid for this since on multiple fronts and continues to pay dearly for our deep problems with reading and writing, communicating and understanding, and thinking in creative and critical ways. In the case of a very sharp medical communicator, it pays to be as clear and precise as you can be when you speak or write grant proposals. Plus, these sorts of sadly common errors make my brain swell. Hearing them gets me thinking I need to do something to teach people not to say this kind thing. Just thinking along these lines exhausts me, since I can barely watch videos, much less write comments. Yet here I am writing a silly reply to head off future brain-swelling instances of such errors that get me thinking of all the things in life I can't do when my well-being relies on my not dwelling on all the things (pretty much everything) I should do or could do or would enjoy doing but that I cannot do. Whew. That said, I live near Harvard, thanks (as always). I think this is not, however, the trial for me. I am glad they're doing it for the general good.
Very exciting! I take PB and LDN and it's the first time im improving - constantly for months now.
I suffer from ME since 2013, and I tried both LDN and PB. Of course everyone is different, I know people that improved a little under LDN but for me it came just with horrible side effects and no effects whereas PB helped me the most of all things I tried so far. I only tolerate the lowest dose of PB but my fatigue and PEM got better to the point that I no longer need a care giver which is a huge improvement in quality of life for me.
I very much agree, we need many many more clinical trials.
I’m really happy to hear they are testing PB. I’ve had ME/CFS for 12 years, and about 1.5 years ago I was diagnosed with Myasthenia Gravis as well. To my surprise, since I’ve been on PB for the MG symptoms, I’ve seen a big improvement in my ME/CFS. I can do a lot more before crashing, and if I do crash, it’s for a much shorter time and is much less severe. From what I understand, PB helps a subset of ME/CFS patients, but not all. It would be wonderful if PB becomes approved for ME/CFS patients.
Glad to hear about your experience.
PB already can be prescribed off label. When my doctor prescribed it, the cost was minimal - I don’t recall whether my insurance covered it or it was just super cheap because it was generic. I haven’t started it because the dosing schedule was very difficult.
do you have any idea about how to test for acetylcholine levels, so we can check ourselves before trying to convince our PCP to let us try PB?
@@marcelguldemond2523 I think it’s different depending on where you live. I live in Canada, and I’ve since found out that your GP can prescribe up to 180 mg of pyridostigmine per day if you have POTS (which most people with ME/CFS have). There is a blood test that checks acetylcholine antibody levels, but it won’t tell you your actual acetylcholine levels. I understand that there are many other countries who allow small doses of PB without measuring levels first. If you do get the prescription, start very slowly because I understand it’s very unpleasant if you take more than what your body needs. If you can, I would recommend slowly trying it, just keep in mind that it doesn’t help everyone with ME/CFS.
Thanks so much for your updates! You give us hope. And you have a beautiful speaking voice - so important for those of us whose brains can't handle too much stimulation
Oh, thanks!! - Jarred Younger
@@youngerlabCan you talk about the itacone shunt hypothesis please?
Thank you very much. I live in South Africa with little medical support. I have struggled with Long Covid for four and a half years, my main symptom being dysautonomia. I have had very good results from LDN. I also watch my diet very carefully. I realized that my gastric relapses were due to certain foods. I recently went for Sacrocranial therapy and this has been life-changing in calming down my nervous system. I now do breathing exercises every morning and it helps to maintain the effects of the Sacrocranial therapy. I am still not out of the woods, but the daily difference in my quality of life is hopeful.
In the case of Gulf War Veterans with GWI, you want to decrease acetylcholinesterase levels. Maybe that's why an Australian study found that Australian Gulf War Veterans have calcium ion channel inhibition. This could be the CNS way of countering the increase in acetylcholine by blocking calcium ion channels to slow down the release of acetylcholine into the synaptic cleft.
Wooo another upload. Great topic thank you for all the efforts you are putting in to our feeds. We are so very blessed and thankful
Thanks for explaining what is being studied
Will be interesting to see what the LDN & Mestinon trial turns up. Looking forward to hearing more about your latest project too 😊 Cheers from Melbourne Australia
Has anyone investigated the effects of Ephedrine and Metarminol? As a sufferer of ME/CFS for 6 years, I noticed my ME/CFS symptoms had disappeared after a dental surgery where these drugs were used. My mind was clear, I had normal energy levels, and even my family commented that I seemed my old self and my posture had changed”. Upon comparing the anaesthetic charts, I found that the only difference was the inclusion of ephedrine and metarminol in one of the surgeries. Unfortunately, the next day my ME/CFS symptoms returned. This observation may be worth exploring further in research.
I think anesthetic and pain killers are a route of interest
@@oliverbird6914 I think this should be looked into further especially in the cure/relief for ME/CFS and long Covid. I know you can’t prescribe patients these drugs but there must be something else that works in a similar way that could be developed.
After been given these drugs it didn’t feel like “ oh this makes me feel better” it felt like I was my old normal self again. I wish I could explain it in person as writing it down doesn’t do it justice
Someone on here said they have been improving as months pass on PB/LDN but the ephedrine and Met it was instant and I felt cured. (The metriomal was only 0.5) so may been the ephedrine which worked
This trial is going to have a positive result. It’s already a given. Patient experiences of pyridostigmine is very positive.
Always exciting to hear about more work being done to find effective treatments. Hope it goes well and gives useful results
I'm very interested in PB but it's assumed involvement in the pathogenesis of GWI makes me a bit cautious. In animal models it's shown to interact with the insect repellent permethrin (which itself is an AChE inhibitor), experimentally induced stress or even supplemental PEA leading to persistent pro-inflammatory immunological changes. Also it can exacerbate the neuroinflammatory response to LPS in animal models. For me this raises questions about the long-term-safety of PB in patients with complex illnesses, I'd like to see adressed.
Yes you might know I do lots of GWI research, and that is a reason behind me saying I wouldn't be comfortable testing PB myself. It is interesting to me, though, that I am seeing low levels of choline in the brain of GWI participants. It is *possible* that the original problem was an AChE inhibitor, but the acute increase of ACh leads to a long-term decrease of ACh. I am not sure because my scan doesn't measure brain ACh directly, only choline. It is possible the research team will not take individuals with GWI in this study even if they otherwise meet the criteria. - Jarred Younger
Thanks for the informative video! Hope the deadline works out well
Thank you so much for sharing. You make this information easy to acces and easy to understand, and it gives me hope. Keep up the good work! ❤
To increase acetylcholine instead of unnatural enzyme intervention, might as well use nontoxic piracetam which increases choline usage, together with choline supp.
That approach makes sense. I would like Dr. Systrom to talk about PB versus piracetam+choline sometime. - Jarred Younger
I’ve used the naltrexone. Didn’t work.
The same for me...
Same.
Thank you for reporting on this.
Thank you for these videos. I need hope. Just wish I had a real doc that would try to relieve suffering. We wouldn’t let a dog live with this wretched illness. Sorry to be so dark. I appreciate you doing the work and bringing this out on UA-cam.
Euthanasia would be considered the ethical choice for a dog, so you are correct, but this attitude serves no good purpose. Doctors don’t have the answers, so looking outside of yourself only leads to more unhealthy thoughts. There is a lot of room for improvement of experience by tending to the only thing we have some control over while we wait for drugs. Therapy gives me an appropriate place to be heard by a pro who will care, but not be burdened like others might by our heavy load. My isolation is no longer a source of pain now that I accept that I need that space to rest and find my best in any given hour. I found grace in acceptance that I must live with this illness when I got cancer. Seek your peace and simple joys to improve your experience within yourself. I ruined 35 years of my life experience being upset about my illness, but I had no such feelings about having stage 3 lymphoma. It helped me shift my attitude about being sick. That shift has helped me find more peace as I navigate whatever my body may do. I wish you the kindness and understanding that we all need while we wait for a new hope.
I was excited to hear about this when I saw the OMF had made the announcement. I thought all the way back in 2010 that there would be a cure in 10 years. I guess the joke is on me….going to take a lot longer. But I’m so pleased to see it has started. Good luck with the monster of a deadline and please look after your health.
Hello. I saw you were involved in the youtube discussion when OMF announced the trial a few months ago. Yes I am glad trials are moving forward, and I am pushing for more and faster studies. I agree it has been too long for substantive advancements. Thanks re: the deadline -- it is going well so far! - Jarred Younger
Glad to know you're aware of David Systrom. I was very impressed when I saw him in some videos where he shared his evidence of blood not getting to the brain sufficiently, which I have often felt was happening. Guys like y'all are going to figure this stuff out.
LDN and Nicotine helps me a lot
Any thoughts on the new hypothesis from the patient-led research collaborative?
They have a few active supported projects. What is the hypothesis they are proposing? - Jarred Younger
Thank you so much for these videos. Do you have any thoughts on using JAK 1 inhibitors short-term, in an attempt to reset the innate immune system? Thanks.
Thanks Doc!
What are the MSH blood levels of your trial population?
Can a person dampen down hypersensitive microglia without addressing the infections causing the situation?
I have terrible ME/CFS and pots and am on both drugs. They are NO cures. This is really dissapointing that nothing new is being studied.
look into Bee Venom Therapy.
Bacillus subtilis helped someone I know very much. They take Vitamatic brand in powder form from Amazon, 1 tsp 2x day on empty stomach. Best wishes ❤
You are living in mold
Thanks for the update Jared! I have ME/CFS for 12 years now, caused by transplant. I assume I wouldn't be eligible as I am taking immunosuppressive drugs?
It's a good question. That class of drugs is not mentioned in the exclusions clinicaltrials.gov/study/NCT06366724#participation-criteria , but there is a statement that a person can be excluded if the investigator believes that a drug makes them unsuitable for the study. So, it isn't clear and will probably be up to Dr. Systrom. - Jarred Younger
Have you guys gone the methylated b vitamins route at any point? Apparently they don't do that in the UK. Mthfr mutation may be fairly widespread.
A Dr William Walsh who wrote Nutrient Power talks about how any added folate can give some people suicidal ideation. I don't tolerate the methyl dilate. I'm also supposed to take hydroxy and adeno B12 versus methyl B12. So it's my understanding the methyls only work for some of us with MTHFR issues.
@@torim5485 I found methycobalamin pretty much instantly available, where I was struggling to process cyanocobalamin. I wouldn't go near folate without sufficient available B12 as it had a nasty effect on my already low dopamine level. I found extra thiamine to be especially beneficial in terms of energy metabolism for proper eye focus etc.
@@torim5485 yeah, that happened to me in about 2007. Got prescribed folate without enough B12 & got very suicidal.
I haven't done any work on that treatment/supplement approach. I don't know if OMF is looking in that direction. - Jarred Younger
Brilliant. Thank you.
Thanks again Dr Younger. I recently watched Dr Systrom's talk at a recent ME conference, where he talked about the prevalence of small fiber neuropathy in CFS and LC, and its possible connection to dysautonomia. As someone with SFN and dysautonomia are some of my main symptoms of LC, I'm eager to see their results. Hopefully the various subtypes of CFS that you talked about before don't get in the way of their results.
Great video!
Have you heard or know about any studies that inspect nicotine for me/CFS? It seems that anecdotally it helps some people. When I tried nicotine patches though, I had terrible nausea, might be because the dose was too high... But I am curious if there is any base to keep trying...
I recently read some groups of ME do well on it while others don't.
I have never heard of a nicotine and ME/CFS study. I just did a check on pubmed.gov and nothing came up. There are many studies on nicotine and fatigue in general, but not ME or CFS. I have only seen some online discussions. So I don't have good sources of info, but related work has been discussed by Cort Johnson: www.healthrising.org/blog/2023/12/07/nicotine-patch-long-covid-chronic-fatigue-fibromyalgia/ . I don't know if it is useful or not - I would have to see a clinical trial. - Jarred Younger
Nicotine patches did nothing for my CFS!
I think what you are forgetting is that a lot of people that have ME/CFS also have issues with TOO MUCH HISTAMINE and histamine is a CHOLINERGIC STIMULANT that activates the parasympathetic nervous system. Since PB potentiates many of the effects of histamine, I don't think this is a good choice despite that it is effective in patients with MG. Also anyone that has IBS-D will not be a candidate for this treatment.
In my case, genetically I have already high histamine and less tools to reduce it. I have IBS and OI. I use PB and LDN. And I do need DPP4 enzym to compensate for the stomach reaction and had to build up extremely slowly. But I am so glad to be walking the stairs again. LDN works great for pain and PEM.
I agree with those points. I can't remember if I mentioned in the video that I wouldn't be comfortable using PB in any of my trials. I think there are too many contraindications. I have some concerns that side effects could be a problem in the PB and combo groups, but maybe the research team has some interesting preliminary data that mitigates the issue. - Jarred Younger
If only my doctor would try something. I’m willing to try many things. I hope I don’t do off myself before a treatment comes. I’m not strong enough to make it the long term.
Had since 1988 it surely is hell. Have tried so many things thru the years on my own. So many times have thought of just throwing in the towel. They never took us serious way back in the day laughed at us. Said was just depression. Like who wouldn't be depressed with this?? Said was mostly female thing so never donated any money for research for us. As usual. It's just mainly women so who cares? Only because of covid they are now doing studies way to late for many of us. We got old waiting for help.
Hang in there...
@@jewelleryaddict that’s sad and just crazy. Yes of course who wouldn’t have profound sadness or depression. It needs the money of MS and similar diseases affecting similar amounts of people. What a waste of opportunity over the decades. That’s frustrating trying so many things and no help.
Thanks for this announcement
What is PB?
Pyridostigmine. You might know it under the name mestinon.
Thank you Dr Younger. All the best with that monster deadline.
If you have a chance, I have a couple of questions:
1) Someone who works in the analysis lab at my local hospital said that their current CRP test is the same as what you called hs-CRP in your video about which basic blood tests to ask for. Do you have any idea whether this is actually a thing, or should I assume they may not fully appreciate the importance of the difference even though it's their profession (and not mine)? My GP didn't seem to know the difference. I have found a list in the local language/their work language which does include both of these tests separately but is undated.
The lab person also said they don't t do the plasma viscosity test in this hospital as that's an older version of this other test they do, the Total Protein test. Sounds reasonable, I guess, but I'm wondering if this is a development you're aware of, again just to make sure they're not confusing something because they're not specialists in this area.
I'm trying to get this as right as I can before going back to my GP, who thought she could only request one or two of the tests on your list in our system (partly a case of lost in translation, partly of lack of familiarity).
2) I was going through your old videos, right back to the first Q&As, in search of one where you talk about the diagnostic criteria for ME/CFS. I guess you use the standard IOM/CDC ones, but what I read in the Internal Consensus Criteria from 2011 I think it was, seem much more relevant to my symptom package. So I"m wondering what your opinion about this ICC might be. Is this something you've discussed anywhere here? Sorry if I missed an obvious video title as I looked through the lot.
If I request CRP at my hospital, I will get a pretty crude measure with a floor somewhere around 5mg/L. To get the sensitivity I want, I have to specify the hs-CRP test. The regular CRP is fine, but it doesn't provide any info between 0 and 5mg/L, and I believe that significant inflammation can occur in that range. It is possible that other hospitals, especially in other countries, may provide only one or the other and refer to it as CRP. So, the name may not be helpful. The way to know the difference is to see the minimum value the test can detect, which will be around 0.3mg/L for hs-CRP. Regarding plasma viscosity, I cannot think if how Total Protein would serve as a replacement for plasma viscosity. If you are having trouble getting it ordered, you will be fine with just the CRP and ESR. Plasma viscosity should correlate with those other tests fairly closely.
I shifted my case criteria over time as more information on the various definitions became available. In my new proposed trials, I will be using ICC, thought I actually assess all the case definitions in case someone wanted to run analyses using another definition. - Jarred Younger
Hi Doc, you mentioned some have symptoms of withdrawal on LDN. I’m getting off suboxone to switch to LDN. Do you think that makes me more likely to get those withdrawal symptoms even if I wait awhile?
Also do you know names of microglial modulators that don’t affect MU-Opioid receptors? Not trying to make you my doc, mostly curious about question 1 above. Thank you
I think the trial criteria of living within 100 miles is not fair to so many, I understand it but not everyone lives on the East coast.
Agree. I would like to join some trials.
Do you have any theories on why LDN hard-crashes some with CFS?
CFS is not a disease, but a very heterogenous group of people that just happen to share some complaints. So with many treatments some may respond well while others will respond badly.
@@guidodenbroeder935 Terribly generic analysis
Opioid receptors are activated at a baseline so giving antagonists crashes that. Seems like everybody would be affected, and sounds like a pretty stupid idea to use it for cfs off hand
@@matthewmccarty4892 There are no specific answers pertaining to CFS.
I agree with the comment that CFS contains people with differing pathologies. As one example, some people seem to have an exquisitely sensitive endogenous opioid system that can't handle the LDN mu-opioid antagonism. Those people will get opioid withdrawal symptoms - anxiety, maybe slight runny nose and goosebumps on the skin, insomnia, agitation, and a few other symptoms. These individuals would have to take a lower dose of LDN, or maybe they can't use it at all. For those individuals, a microglia modulator that doesn't affect mu-opioid receptors will be needed. That is why we want to have several microglia modulators available. - Jarred Younger
PB would be dangerous for Gulf War who have been exposed to chemical nerve agent sarin gas. Sarin gas already inhibits acetylcholinesterase, so by introducing PB to treat a GWV with CFS/ME could increase acetylcholine to a dangerous to deadly level.
Why can't we try Stellate Ganglion block for chronic fatigue syndrome as tried in 2022 for long COVID patients?
SGBs are powerful and interesting. I need to see the 2022 authors show efficacy with a larger group to make sure the results in the first two cases weren't flukes. I think it could be useful in ME/CFS cases where there is abnormal sympathetic drive, anxiety, pain, or orthostatic intolerance. It is on my short list of interventions to try, but I am working on vagus nerve stimulation first. - Jarred Younger
How does the feature article in New Scientist, 28 September, p 32 relate to ME/CFS in general and more specifically your thoughts on overactivated microglia cells? Do you know if their tesearch also covers ME/CFS?
Dr. Ponting at the University of Edinburg does great work. I haven't been able to read the preprint yet, but I will look at it soon. It is available here: www.medrxiv.org/content/10.1101/2024.08.26.24312606v2 - Jarred Younger
Doesn’t seem to be especially revelatory although indicates low level inflammation and some insulin resistance?
I was lucky enough to see Dr. Systrom in 2019, who performed a CPET and found insufficient aerobic preload, and prescribed me a high-sodium diet and pyridostigmine, with good results. I had tried LDN already with no results. I wish I lived in the Boston area to be able to participate in this study but I did sign up in the OMF registry.
Thanks for letting me know which ones did and didn't work. - Jarred Younger
@@youngerlab Cows with Fusarium Vomitoxin (deoxynivalenol) poisoning go to a salt lick 100 times more than non-contaminated animals. Are you checking the MSH levels of your participants? If not, I suggest you start.
A 90 day trial of LDN did nothing for my CFS.
Keep in mind that you might have been in the control group.
Doctor wrote me an RX for it. It was just another waste of money.
LDN didn't help me but it gave me brain explosions. I didn't think that was good so I stopped.
What dosage were you started on? It is really important that patients with ME/CFS are started on a very low dose, building up slowly. Many people are started on 1.5mg or even higher. My daughter started on 0.5mg per day and took months to build up to 4.5mg. Each increase knocked her around for a few days but then settled down to produce a significant improvement.
@@davidrumsey3180 2 or 3 I believe
Not sure why they are wasting money on LDN as it is just a bandaid, it doesn’t fix the ANS which is what is needed for CFS
Hasn't LDN already been proven to help SOME people? (Griffith team in QLD, Australia)? I thought the reverse LDN was something you were looking at testing, because normal LDN does not help a lot of people with ME/CFS.?
I'm still searching far and wide for a great synthetic chemist to make the dextro-naltrexone. - Jarred Younger
@@youngerlab Is funding secured for this study? Have you already designed it? How close are you to recruiting for this?
🤞🤞🤞🙏🏻🙏🏻🙏🏻
Looking for more natural studies. Pharmacology is a profit based medicine.
In the case of 'ME/CFS', completely useless, like all OMF studies. For ME, PB may be interesting but LDN isn't.
They're building from the floorboards up.
Tell you what you do better
Nothing has worked for me except LDN. Truly.
@@annbarber2571 Which means absolutely nothing for others diagnosed with 'ME/CFS'.
@@oliverbird6914 Doing better for patients diagnosed with 'ME/CFS' is done solely by examining them further and finding their true diagnosis.
@@guidodenbroeder935your knowledge is decades out of date. LDN is one of the few compounds that actually help a lot of patients.
Please - this is a small point, but you are a smart guy who show not speak like a sports announcer. People cannot live or work "out of" a place, only in or at a place. Nothing can be "based out of" (though airline crews "fly out of" a given airport) or, as another common internet error has it, "based off" of something. If a person has a base, it is in that place (or, in certain cases, at a site) or it is not based there at all. If the base is out of the named place, it is not in that place. Similarly (taking up a related error that has taken on a life of its own on the web), if one thing is a basis for another - that is, if the former thing has the latter thing as a base in the normal senses - it must be based on that thing, or have a basis in that thing, or the one thing might be a basis for the other thing, or, in an alternative sense, it might be a base for that thing. What cannot happen, despite what so many people have been saying lately, is that one thing is "based off" another. Indeed, this phrasing directly contradicts the sense the speaker hopes to convey. The whole point of asserting the the logical or mechanical senses of base and basis is to convey the relationship of the things in question in which there is an ordered nature that supports, underlies, or the like. Choosing the right term vastly improves the clarity of the relationship.
We are losing in English-speaking societies the sense of why we use this or that term in sentences, and how the different options for everyday parts of speech in the class of connectors, placeholders, comparators, indexicals/referents - all the little words that stitch together our sentences - differ from one another and determine their meanings. This is less a case of the internet being to blame than of our misplaced societal priorities in funding education. We have not taught English grammar and usage as a matter in American schools since the turn of the eighties (there were similar faddish education cuts in other English-speaking countries in that general time frame), when another round of cuts to federal education budgets cut a number of traditionally taught subjects on flimsy grounds. Our society has paid for this since on multiple fronts and continues to pay dearly for our deep problems with reading and writing, communicating and understanding, and thinking in creative and critical ways.
In the case of a very sharp medical communicator, it pays to be as clear and precise as you can be when you speak or write grant proposals. Plus, these sorts of sadly common errors make my brain swell. Hearing them gets me thinking I need to do something to teach people not to say this kind thing. Just thinking along these lines exhausts me, since I can barely watch videos, much less write comments. Yet here I am writing a silly reply to head off future brain-swelling instances of such errors that get me thinking of all the things in life I can't do when my well-being relies on my not dwelling on all the things (pretty much everything) I should do or could do or would enjoy doing but that I cannot do.
Whew.
That said, I live near Harvard, thanks (as always). I think this is not, however, the trial for me. I am glad they're doing it for the general good.
It is heartwarming to know that the grammar police exist online. 🙄
And after all that, a cup of tea and a lie down (to recover) might be the best course of action. Blessings and good wishes to you.
You obviously don't have m.re