Additional note about interpreting the results: Dr. Lange got back to me and explained why the colors were switched in the final pane of the main figure. That test is reported as the number of correct moves per second. The red bar (ME/CFS) was lower, meaning that the group made fewer correct choices per second than the control group, so they did worse on that test. - Jarred Younger
I have severe (homebound, 95% sitting all day) ME/CFS, and I've noticed that my all-over inflammation level is a 1-to-1 correlation to my neuro-inflammation and brain fog. Sometimes, it's pretty bad. And that is also when I'm very light and sound sensitive. As far as predicting how immediate or delayed PEM will be as related to the type of exertion, it varies a lot based on what type of exertion. Physical exertion, and (in my case) when I have my gamma globulin infusions, the PEM response is immediate. Emotional and social over-exertion, my physical inflammation will increase over 48 hours, and the crash will happen at about 48 hours. One new thing that my ME/CFS specialist recommended that I've noticed a marked improvement against physical inflammation and brain fog is PEA (Palmitoylethanolamide). It took a month's worth of this to see any difference, but my brain fog is much less debilitating than a month ago.
For me, when I am in a doctor’s office I am more alert because I am a bit nervous, I am in a new environment, I have been moving around, and am interacting with new people. I can’t stay like that all day or I will experience PEM but if I go in for cognitive testing I would absolutely get a different result because of that compared to doing it at home. I can’t induce PEM before the test because then I won’t be able to go in to take it.
Great point, and another reason why the at-home testing could be very informative. One thing I notice is that ME/CFS makes everything much more effortful than they should be. It could be a problem in a region like the ventral striatum that processes reward versus risk. This area is sensitive to alterations by microglia-driven inflammation. - Jarred Younger
I have severe ME since several years. I have the encephalitis + gut microbiome dysbiosis subtype. I'm 34 years old. AuDHD, official IQ 135. I did cognitive testing with a neurochiropractor that confirmed that my cognitive abilities are like a demented person 70+ years old. My reaction time is horrible. I have executive dysfunction and profound memory problems. Terrible dysautonomia ans insomnia. I can't socialize bc I don't have concentration enough to listen to people talk. Whereas I didn't have ADHD learning disabilities as a child. Luckily I know my infectional causes to my encephalitis and AuDHD. Tickborne encephalitis and streptococcus mainly, among other bacterias and viruses. Doctors are too far behind on the research, most of my help I have gotten from other ME ill people online and practitioners who aren't medical doctors. Most of my testing for my causes I have done myself, to great success. I just wish doctors would take my knowledge seriously
@@katnisseverdeen2.016 Yeah sure but what works for me might not work for others. What works for me are things that I'm deficient in. I don't supplement to alleviate symptoms, I supplement to treat my causes. My top supplements are butyrate, ginger, artichoke, zinc, magnesium, calcium, potassium, B2, B6, DHEA, among many others. LDN and quetiapine. I have tried a lot of nootropics for cognitive issues, in my experience they help 5% at best, not nearly enough to make a difference. Aniracetam is my top choice but doesn't pair with quetiapine. FMT has helped a lot though.
@@Angela-zj5sx I wish you the same, may you fully recover and have life quality. My sister also has ME and pretty much all of my friends, I lost most of my healthy friends but gained many ill ones
I am very glad you were able to discover some things that help using your own experimentation. I wish you didn't have to do that. We need genome-proteome testing to identify individual vulnerabilities, because it is likely the optimal treatment need to be tailored for each individual. I hope you are able to continue improving! - Jarred Younger
If someone was to run this study again I would suggest a T-1, the tests run before they even prepare for the trip into the lab. It can't just be the day before because we are often crashing having prepared ourselves to leave the house but something like a week before and asked if we are at baseline or not. The mere process of travelling to a lab will crash many patients so they are already impaired when they turn up and while its not a significant difference (as in it could happen just by chance) it is suggesting that some of the cohort is already crashing at T0. They didn't test it so we can't know but this is one way I would change the study design because crashing is not about maximum exertion on a bike its about the shower we took the day before we even turned up to the test.
@@PaulRKeeble quite right! There probably should be a pre-shower test. Also, I’d like to see CPETs with post-tests comparing subjects who lie down immediately after the test vs. those who do not. After I took a Workwell CPET, they allowed me to lie down on the floor next to the machine while they analyzed the data. I suffered minimal aftereffects, even less than I do from taking a shower, which is on a different floor from my bed.
My cognitive PEM often starts later than my physical PEM. Wandering off in the middle of doing something & forgetting all about it, trying to retrieve a word and coming up with something that sounds like the one I want but has a totally different meaning ... it's maddening!
Comparing test scores of people with ME and healthy subjects is useful, but what may be more relevant to individuals and to medical science to gage the effects of ME could be a test that compares individual patients’ functioning before developing ME and after being afflicted with it. A pee-ME high-functioning person might experience a serious reduction in capabilities, yet test average with these instruments. Or did the researchers find a way to account for such a possibility?
I think I would 100% fail the cognitive tests. I’m not stupid. I’m quite intelligent but the energy it takes to do cognitive stuff any more I simply can’t access the energy needed.
I would bet that the IQ tests (at least the short ones) would show normal IQ in ME/CFS. I actually don't see classic IQ included in most cognitive studies of ME/CFS. What you are describing is similar to what other ME/CFS individuals say. - Jarred Younger
Definitely makes me feel better. I've talked about feeling cognitive loss, but most people don't get it. Now I have an excuse! ;-). Thanks for your continued sharing of data!
Definitely. The next step is to figure out *why* the cognition is impaired. Is there a general slowing of neural transmission, is it microglia interference, or something else? I haven't seen convincing evidence that the brain is damaged in ME/CFS, so it should be the case that interventions help. - Jarred Younger
@ The only “proof” of condition during my long COVID was a brain scan showing lesions throughout. Unchanged in a follow-up 6 months later. Coincidental or causal, I don’t know, but at that point I at least knew I wasn’t crazy!
I am very sorry to hear this. I am wondering if you have had an opportunity to be tested clinically to see what specifically is going on with the cognition. - Jarred Younger
Yeah, I haven't seen anything that looks like neurodegeneration like Alzheimer's, Parkinson's, or multiple sclerosis. Without neural damage, it should be easier to treat. - Jarred Younger
Thank you! I believe the brain draws upon something like 25% of the body's energy, so it's sadly little surprise that cognitive function is impaired in ME\CFS sufferers. But it's good to see a study that has tried to quantify it.
So glad to see this study! It’s very important to have tests that are appropriate for our illness. I hope the computerized tests used in the study will be accessible for patients. I have me/cfs and also got Long Covid, which resulted in cognitive impairment severe enough that I had trouble speaking. Because Alzheimer’s runs in my family, and that was my main concern, I went in for testing at a geriatric clinic. The doctor didn’t know and didn’t care about any impairment that could be caused by LC and me/cfs. So she gave me a brief screening test, which showed some impairment, and insisted I needed to have a 4-hour test from testing psychologists. I declined because I knew I couldn’t even sit up that long. Also, she said that I couldn’t be tested by the psychologist recommended by my me/cfs doc, since she claimed that psychologist’s test would only be appropriate for stroke patients. She wanted me to get an Alzheimer’s-specific assessment, so I could participate in an Alzheimer’s drug study. The drug in question has severe side effects, including brain bleeding. Fortunately, my cognition eventually improved along with my other LC symptoms - so declining the test and study was the right choice for me.
Thanks for the story. I am very glad the cognition issues resolved somewhat. The cognitive testing world is a bit complex - so much so that the PhD's who do it need a special training tract and internship (neuropsychology) from the other clinical psychologists. - Jarred Younger
@ thanks for your comment. I’m fortunate in that, even though I never got neuropsychiatric testing, my husband is an academic cognitive psychologist, so he’s been able to observe my cognitive journey. Unfortunately I found that having the screening test result on my medical record prevented me from getting long-term care insurance. So we need to think carefully about getting such testing through our health care providers. I assume testing via research would be confidential, but in most cases we don’t find out our individual results. (The Bateman-Horne Center has been an exception in this regard, in my experience. But BHC forwarded the results to my PCP, so they got into my medical record.) When my mother was diagnosed with Alzheimer’s, this triggered a reporting requirement that lead to her driver’s license being suspended. In her case, it was a godsend, as she was convinced she didn’t have AD. I’m not sure what level of cognitive impairment leads to a requirement for new written and driving testing to maintain a license. If we’re too impaired to drive, of course we should stop. Just something to keep in mind re: cognitive assessment.
@@youngerlab Just wanted to highlight the new open-access journal article, “Modafinil: A Review and Its Potential Use in the Treatment of Long COVID Fatigue and Neurocognitive Deficits.” Dr. Bateman prescribed modafinil to me for me/cfs and it helped a lot with my brain fog and daytime sleepiness. Hope it continues to be studied and trialed by doctors.
I had an education psychologist give me tests and they said I couldn’t put a structure on things and verbal memory was affected….the front bit of the brain was affected…..I was a student before and had suddenly huge problems with thinking in certainty ways after a virus .Telling me this helped explain stuff and reduced my angst and led me to find different ways of using my brain. In the end I got an art degree as my brain could still do this…..this helped enormously in getting back socially and getting my confidence back.
Thanks for sharing. It can be helpful to get the cognitive testing done to isolate the impairment because there are interventions (like specific cognitive training games) that can help. Or at least knowing the problem can help people come up with helpful workarounds. I don't know what tools the neuropsychologists have to help patients now. - Jarred Younger
I am so thankful for your work! And I am also super happy that you have this chanell :) I don't need to read complicated studies and follow latest research, I got you! :)
I have been trying the relatively new supplement called IGF-1 and it seems to be opening up pathways. Its still early on but thought I would share. I am optimistic.
@@arasharfa I don't know why not, I buy it through Nutronics Labs and Stew Peters and Christopher Key advertise about it everywhere. I need to research it on more but I definitely noticed a difference in blood flow even after just one dose.
Yes, it could be inadequate oxygen, glucose, or ATP reaching the critical brain regions. We are looking at those things as well. The panic threshold could be caused by low glucose or oxygen, or could be a result of inflammation. - Jarred Younger
Cognitive testing usually focuses on assessing a single function at a time. But in real life, cognitive work requires an integration of several functions, and I think that cognitive testing for ME/CFS (and perhaps for other conditions too) should measure performances in the context of this kind of workload.
It is an interesting idea. It could be that individuals with ME/CFS have a specific dysfunction in the ability to filter out unimportant sensations. Like the ability to hear a specific voice in a crowded room with many people talking. One of the major tasks of the brain is blocking out most of the sensations and perceptions being generated. It would be very difficult to perform cognitive tasks with the function impaired. - Jarred Younger
@@youngerlabDr. Bateman has told me that executive function tends to be impaired in me/cfs. It certainly seems to be the case for me. When I was still working I had to adopt flow charts to organize the tasks I had been doing unaided for several years before I got sick.
I question whether repeated cognitive testing would actually be of benefit to patients, especially more severe ones. At my most severe, my greatest obstacle to healing was doctor appointments -being asked to do cognitive testing would have added additional burden without affecting the treatment. I don’t think a blanket recommendation like that should be made. As always, thank you so much!
I can see the downside of the testing, though cognition is considered when judging the degree of disability. It can help with insurance, disability claims, and other aspects of dealing with ME/CFS. People generally do a poor job predicting their own cognitive performance, so the standardized tests can be important. It is also one of the few areas in ME/CFS where there are actual objective tests that are accepted by the medical community. But it will be much more important for some individuals than others. - Jarred Younger
@@youngerlab For demonstrating disability, absolutely! It’s the idea of a *blanket* recommendation that is a problem. We have enough trouble making doctors understand our needs. Having to argue about why we don’t want to do tests that won’t change the course of treatment (or doing the test) can be a significant burden.
The stronger results for the more complex tasks lines up with anecdotal experience, as well. The 4 simplest tasks in this study seemed pretty... well, simple. Unless I misunderstood. So much trickier to detect the differences between groups with super simple tasks. My 2 cents: They should do a study where people have to do complex tasks for 3 hours (for example) continuously. I would predict that the healthy group would show some fatigue, and the CFS group would show a drastic drop in performance. No exercise equipment needed for this study! Thanks as always for these videos and for your work in general, Dr. Younger.
@@fitasaviolin I haven't gotten a response yet. I'll send another email. We are in some committees together, so I'm sure I will hear from her soon. - Jarred Younger
It's extremely important to point out these are the mildest affected ME/CFS patients since they are capable of coming to a clinic. Also, it would be very interesting to see a comparison between healthy controls and ME/CFS patients when there are distractions involved, such as quiet music playing etc. Demands of real life on cognitive function are not comparable to a quiet peaceful room in a lab. People talk, music plays, someone taps you on the arms, and it's those moments that are the most demanding on ME/CFS sufferers. For example, back when I was still mild I once found myself completely unable to step on an escalator because music was playing and my brain couldn't catch up with the movement of the steps and what my body needed to do to step on them while in motion
I agree with these points. I did a video a while back on the importance of including housebound and bedbound participants. On the other point, I think a distraction study would be interesting. - Jarred Younger
I would love to see one cohort given the most difficult test first. Would our results be better than what shows in the study because our brains are fresher? Or is the task itself that overwhelming?
I can't remember if they counterbalanced the order of how the tests were presented, but that would be a good idea. I am pretty sure they didn't report order effects, so I am guessing they started with the simplest task. It is a good idea to see if there is "bleed-over" as you mention, where one task affects performance on a subsequent task in ME/CFS. - Jarred Younger
Yes that would be my particular angle on understanding the cognitive impairment. We've known for a long time that general inflammation in the brain slows down even simple psychomotor function. - Jarred Younger
My girlfriend had four day neuropsych testing done by Dr. Lange as part of the objective data we presented for her disability claim. Dr. Lange really cares, a sweet women. GF has found a program that is actually helping her now, finally. Might be interesting to get her retested. We also did the two day CPET testing separately as part of the disability claim. With that data she sailed through disability approval. Would be happy to share the test data with you if you are interested. And the medical profession, as a general rule, still has no clue and just throws their hands up.
Dr. Lange is definitely in it to help people. One problem I am seeing now is several of the "classic" ME/CFS researchers have been retiring. I am looking really closely at the new scientists that will hopefully take over and solve the puzzle. - Jarred Younger
@@youngerlab Since it seems similar to long Covid, I was hoping the money put into that would spill over to ME/CFS. I spoke with a well known expert at Vanderbilt who wrote the diagnostic criteria for ME/CFS. Can’t recall her name. She stated that the interest, focus and money that was being given to ME/CFS was now being directed towards long Covid. She said there was nobody at Vanderbilt that was treating patients either, which is why I contacted her. I have not seen much fruit from long Covid research. In the end ME/CFS may not be a medical condition treatable by dissecting the biology. My girlfriend’s improvements from her current attempt to recover is being treated by a neurologist who recovered himself. I am optimistic that this will work. The mind controls the body.
I very much appreciate your updates. Presentation is perfect and easy to understand. I do, though, spend too much time wondering who the artist is of the picture behind you and if the image has a name. SO easily distracted. 😂😢 it certainly helps that I have a sense of humour. Cheers..
Yes, there are a few studies showing that even simple reaction time is slowed in Long-COVID. My hypothesis is that the same mechanisms are involved in both conditions. - Jarred Younger
As someone with severe ME/CFS when I was in the moderate stage I would have people tell me it sounded like I had a stroke the way that I would talk that was because my brain was shutting down. I had went too far over my energy limit when that happened.
Mindfulness, meditation, emotional processing…potential programs from Alan Gordon, Gupta program, Dr Levine, poly vagal theory…also sunlight/near infrared light…see medcram research. Our bodies are amazing and so are you 👍🙏
I hope you are able to get this solved. Cognitive therapies are outside of my area, so I don't have great recommendations. There are so many tests and interventions that might help, but it can be hard to get in with the needed experts to figure out what you specifically need. My main approach is reducing inflammation in the brain, which may or may not be the issue you are struggling with. - Jarred Younger
Ive been knowing and saying this since I had covid. At the time i thought it was my depression meds. But its definitely brain inflamation from long covid.
That seems to be the case for many people. Regarding anti-depressants, there is a pretty wide range of effects on cognition (ranging from negative to positive) based on the class of medication. - Jarred Younger
As someone who games daily. Im more sensitive to reactionary times. 4 or 5 days a week i cant play competitive as my reaction and thinking are so delayed. I have no idea of the cause, im not sure its PEM. I just have good and bad days. It feels like concusion. But my reaction times are massively delayed. Im always 100% commited. Also in conversations im unable to respond to complex questions immediately. Ill sit down and 5 minutes later, everthing will start flooding in, then i get frustrated why i couldnt think and respond at the time of that conversation. Not sure if anyone else has ever experienced this but a few years back i had what felt like a cascade of water run down the back of my brain. Like there was fluid or something was blocked. Everything immediately cleared up and my energy levels rose to where i could run and do exercise. I woke up the next morning and the pressure and ringing in my brain had returned. Along with the fatigue and brain fog/fire. So for me atleast i know what i have is 90% neurological and cureable. Even though ive been suffering for 40 years.
The water on the brain feeling comes up in several neurological conditions. It can also happen with Chiari malformation. The brain doesn't have sense receptors, so the dura is the deepest place that could detect abnormal sensations. It is possible for increased pressure within the skull to produce sensations like you describe. Many of them can be detected with standard clinical neuroimaging scans. - Jarred Younger
U described how I feel today. Like my brain is hot, fuzzy, wobbly. This doesn't happen real often, this bad. Having a hard time typing. U are not alone, it helps me to read ur post. So I don't think I'm crazy.
I’ve been wanting to ask. Anhedonia, no emotions, no feeling, empty numb brain has been a common symptom for CFS. I see LC folks say the same and both say it often will lift late evening. *I don’t see any research on why it would lift and doesn’t that mean no treatment can work to restore things? Is there any research or ideas? Any hope? The brain function not working is torture. There has to be some meds or does the fatigue have to be treated and then the brain will follow?
There is some evidence that cortisol is too low in the morning for people with LC or CFS. Then it normalizes over the course of the day. Try taking a ice cold shower in the morning and see if you're still anhedonic afterwards.. ;)
@@awaken69interesting. Wild if it’s just cortisol but perhaps. Crazy feeling losing your inner world. Not schizo but I get all the Schizophrenia negative symptoms. So uncomfortable. It’s definitely different from depression & docs don’t seem to realize it. I’ll try the cold shower😊. Next I’m buying all the meds online. Sure hope there is something. Seems like they should have some ideas to treat this.
My belief and personal experience is that the liver two phase detoxification eventually filters the overloaded system and late in the day ' burns cleaner' with cleaner fuel. Chines Med calls simular 'Stagnation'.
@@spocksdaughter9641 very possible. They seem clueless. Bothers me, so bizarre and makes me think no meds will help as we need to know why. Doesn’t seem to be neurotransmitters. You might be right.
Many important points here. There are many chronic conditions that change drastically between the morning and evening. Just as an example, many with rheumatoid arthritis will see improvement as the day goes along. There are inflammatory, hormonal, and several other possible reasons. Things that develop over the day are hard to research, which is why the main thing I want are devices that allow testing at home over several days. My next video will probably be about a continuous inflammatory monitor that could explain this effect you are describing. - Jarred Younger
I have been severe, with completely homebound, functionless periods with severe narcolepsy-style, dropping-anywhere somnolence, and I have been in remission, each more than once in my time with ME (decades now), and I have rarely felt particularly impaired cognitively as a result of that condition. Certainly I have been uninterested in cognitive tasks, and less likely to do them well in those states, for reasons of exhaustion and physical misery, but that is not different in kind from when I have been normally sleep-deprived or otherwise sick. Does it render me murky when my brain feels as though it will swell to the point where my eyes will pop from my sockets? Yes, but it does not leave me less cognitively impaired to be doubled up and writhing with uncontrolled kidney pain. Active illness always reduces cognitive function, for fairly clear reasons. The question is how much and why. I can see all sorts of possible stories with ME. Its particularities may actually make it inevitable that people have bouts of cognitive difficulty. Pain problems could do that as well, taking care of both my cases above. That could be so and we can still observe that everyone with significant illness faces cognitive challenges at certain junctures. We may find certain illnesses that target or involve the CNS in ways that have significant impacts on brain chemistry both entail special cognitive effects and predispose people to develop certain mental illnesses (especially depression and anxiety, but possibly others) at higher rates than the general population. Or this kind of thing may not be so. Any long-term illness brings some level of cognitive difficulty from time to time and raises one's odds of breaking one's brain while trying to cope with the typical cascade of life changes long-term disease brings. We could lay out a bunch of examples and possible explanations along these, but this isn't the place for it and my head hurts too much already for having overdone a minimal bit of housework. The upshot is this paper and your video wade into very complicated territory. Teasing apart where the lines of causation tangle with varying levels of correlation is no easy task, and no one study is going to answer all our questions. A lot more work remains to be done. It is always good to see people like Lange's group care enough to do some of the early spade work to unearth some evidence and to frame some useful questions. I wish they had done a better job of being clearer in the images about the relative data values. People get the wrong impression easily from such images - even people who ought to know they need to read the text carefully to understand such graphs, since, oddly, authors rarely do a good job communicating useful information in the graph visuals. That said, I am glad they have done what they have done with this study. It does not provide any answers, but it contributes to future answers in a field that gets fewer contributions than we need to see.
In this case, it is the log10 transformation that makes me unable to judge the magnitude of the group differences. I prefer to use raw values in figures for that reason. - Jarred Younger
Depressing. I had guessed, as I have noticed after 2 years at my library there are still things I need to ask about, even if I learned it before. I only work ~3 hours/week, so some of these are things I don’t practice a lot (new patron accounts). What can we do about this? Or is there anything we can?
There are pharmaceuticals and botanicals that can help more with cognitive issues. Pycnogenol (which we've discussed previously) is one, and palmitoylethanolamide is another. But we'd have to run clinical trials to know if they are helpful with cognitive issues in ME/CFS specifically. - Jarred Younger
I had severe difficulty 14 years ago and got away from some environmental issues because I was on palliative care. My function is slightly better yet overall decline. Many don’t have reserves and with every supplement I could afford, it isn’t holding back the ME/CFS nor the other issues and COPD-I was never a smoker. Too many impairments and even though I was born with it, there is not help for it. I received help from ASA as a child and trying to keep stress down, well we try. 😊
I'll check it and see what I can do. I have been having some problems with the platform thinking I am a company selling medications. It is probably an AI thing based on the terms I used in my presentations. I've been trying to work through the issues. I'll see if there are any alerts on #41. I don't know how it works, but it is also possible the video was blocked from some regions because it was about Veterans. That word might have triggered something. Not sure. Thanks for letting me know. - Jarred Younger
Is it possible to have ME/CFS and not show inflammation markers in blood tests? I woke up on day last spring with hand and foot joint pain, muscle spasms and fatigue. I wasn't sick, just achey and tired. Within a week the tendons in my hands ached everytime I moved them. The cramps pulled muscle/tendons off bones in my feet. The foot and hand joints became. arthritic. My neuroconductive tests revealed very little signal getting through to hand and feet. I test weakly for Lupus, but not RA. I have the HLA B27 genotype. I am working with a rheumatologist but am in pain all the time and haven't gotten a diagnosis yet. Weirdly with all the aches and pains, my inflammation markers are normal. I also am recovering from a serious TBI from 9 years ago, but this seems really different from that.
I saw another researcher on ME/ CFS say that the disease is found in the nervous system and tissue. Therefore, it will not be picked up in a blood test. Nevertheless, my blood test always comes up with high inflammation numbers that my doctor totally ignores.
I have not had a research participant who presented in that way. Small fiber polyneuropathy can feel like your description. If the physical damage to the tendons have been confirmed, it (to my knowledge) would suggest a neural conduction issue more than an inflammatory one. There are autoimmune issues that could disrupt transmission, but the first place would be to rule out any vitamin or mineral deficiencies. I'm guessing circulation issues and diabetes have already been ruled out. - Jarred Younger
This is why ‘Effort Preference’ is a terrible term when used in ME/CFS studies like that NIH one recently. They didn’t take into account that neurones poop out of energy therefore it’s not about the patients ‘preference’ It’s about ability and disability. This study is a good example for why ‘Effort Preference’ needs to be removed from that study and an apology by the authors given to patients
I know there is a small literature on "effort preference", but it is outside of my area. In my field of inflammation and neuroinflammation, it is expected that someone who is ill will choose an easier task. If someone has a 104F/40C body temperature and can barely get off the couch, they won't be choosing to do yard work. They might be able to get up for a drink. But we wouldn't consider that decision a preference. We see something similar where people with fibromyalgia become more hesitant to do activities that could exacerbate the pain. I would have to read the cognitive literature more to know what claims are being made about effort preference. - Jarred Younger
I had these exact tests (the one back, two back and maze) in my Alogabat [autism drug by Roche] second phase study last year. The maze was a nightmare lol
I would love to see if you've done any research into the potential causes being ionic bonding or ionic pathways between cellular membranes at the molecular level basically look into Michael Levin's work on bioelectricity and disease?
Levin's work, primarily conducted at Tufts University, explores how bioelectric signals and ion channel dynamics play crucial roles in cellular communication, tissue patterning, and potential disease mechanisms. His research suggests that: 1. Cellular electrical communication is fundamental to: - Tissue organization - Developmental processes - Potential disease and healing mechanisms 2. Key concepts from Levin's research: - Cells communicate through ion channels and electrical gradients - Bioelectric signals can potentially "reprogram" cellular behavior - Electrical/ionic disruptions might contribute to disease states Regarding ME/CFS specifically, Levin's framework suggests that ionic pathway disruptions could potentially: - Interfere with cellular communication - Disrupt energy metabolism - Contribute to systemic dysfunction While not definitively proven for ME/CFS, Levin's research implies that: - Ionic communication errors could potentially be a causative or contributing factor - Targeted electrical/ionic interventions might offer therapeutic possibilities - The disease might involve complex bioelectric signaling disruptions This perspective shifts from purely biochemical models to include bioelectrical information processing in understanding disease mechanisms.
I'll check his work out. I'm a clinical scientist, so my cellular and molecular work is limited, but I'm always looking for new ideas that can be brought over to human participants. Thanks - Jarred Younger
Dear God I am completely unfaciltated!!! No one has PROPERLY DIAGNOSED my brain!!! I do not have competent MD’s in ANY area!!! My animals received more definitive attention!!!
I helped with the development of such a test (actually a more advanced version) 30 years ago in the Netherlands. I wasn't able to do T4 as I lost consciousness due to exhaustion. But I have ME, not 'ME/CFS'. The difference between 'ME/CFS' and HC is very insignificant compared to the difference between ME and HC. Further, I performed relatively best in the most complicated test. That is another difference between ME and 'ME/CFS'.
I'm confused because I was under the impression that ME and CFS are synonymous. I've seen you make the distinction on here before but I've not found this distinction being made anywhere else. In fact most places explicitly say something like "ME also known as CFS".
@@chimpwithagun If you do more reading on the history of ME you will find answers. Looking into the work of Dr. Byron Hyde would be an excellent start.
@@chimpwithagun ME/CFS is the general term used, but there are some distinctions that can be made. CFS typically describes profound fatigue that is not helped with rest. ME/CFS adds neurological symptoms and post-exertional malaise. - Jarred Younger
I'm wondering how loss of consciousness is scored in the testing protocol. I could see some researchers removing that "incomplete dataset", but that would be missing the point. - Jarred Younger
@@youngerlab Adding a requirement makes 'ME/CFS' a subset of CFS, not a more general term. The symptoms of ME are different. Fatigue and malaise aren't characteristics of ME, but it has many symptoms that aren't in CFS or 'ME/CFS' or are more specific. Also, ME is a disease. In addition to symptoms, it has signs and pathology, which CFS and 'ME/CFS' lack. So the letters ME in 'ME/CFS' should rather stand for 'Malaise after Exertion'.
All these tests, have had since 1988. Have degrees in Health Ed. Also my own study published in 2000. I have watched all this since diagnosed but some tests just wasting time. What we need is to find what caused this horrible illness then we can better know what we need to help us. This just seems a waste of time. Sorry just sayin.
I understand the point. One thing I didn't mention is that this analysis is part of a larger multi-site study that gathered experts from several fields of research to investigate ME/CFS. They don't know which tests will end up being the most valuable. - Jarred Younger
I'm sorry, but this is the biggest waste of money and time. I hope RFK starts sending these people home to find new careers. Start believing patients. The medical system is so backward with all this stupid "data" instead of treating people and believing them.
The "medical system" is different from researchers. Other countries have different and better medical systems, but they rely on science researchers like Dr. Younger. Many doctors do listen to patients, you haven't found the right one yet. Dr. Younger has helped thousands of people with his research on low dose naltrexone. He is one of the very few doctors in the U.S. researching me/cfs and Fibromyalgia. Data is part of science; medicine is based on science and that is a good thing compared to the crazy medical practices of the past. Bleeding people to heal them had no science behind it but was practiced for a long time.
Additional note about interpreting the results: Dr. Lange got back to me and explained why the colors were switched in the final pane of the main figure. That test is reported as the number of correct moves per second. The red bar (ME/CFS) was lower, meaning that the group made fewer correct choices per second than the control group, so they did worse on that test. - Jarred Younger
I have severe (homebound, 95% sitting all day) ME/CFS, and I've noticed that my all-over inflammation level is a 1-to-1 correlation to my neuro-inflammation and brain fog. Sometimes, it's pretty bad. And that is also when I'm very light and sound sensitive. As far as predicting how immediate or delayed PEM will be as related to the type of exertion, it varies a lot based on what type of exertion. Physical exertion, and (in my case) when I have my gamma globulin infusions, the PEM response is immediate. Emotional and social over-exertion, my physical inflammation will increase over 48 hours, and the crash will happen at about 48 hours. One new thing that my ME/CFS specialist recommended that I've noticed a marked improvement against physical inflammation and brain fog is PEA (Palmitoylethanolamide). It took a month's worth of this to see any difference, but my brain fog is much less debilitating than a month ago.
Thank you for sharing this
@@lego65100 Thank you for sharing and my prayers for your complete recovery.
Lots of good points. PEA is in my top 10 treatments I want to trial for ME/CFS (and it looks promising for fibromyalgia as well). - Jarred Younger
For me, when I am in a doctor’s office I am more alert because I am a bit nervous, I am in a new environment, I have been moving around, and am interacting with new people. I can’t stay like that all day or I will experience PEM but if I go in for cognitive testing I would absolutely get a different result because of that compared to doing it at home. I can’t induce PEM before the test because then I won’t be able to go in to take it.
Great point, and another reason why the at-home testing could be very informative. One thing I notice is that ME/CFS makes everything much more effortful than they should be. It could be a problem in a region like the ventral striatum that processes reward versus risk. This area is sensitive to alterations by microglia-driven inflammation. - Jarred Younger
I have severe ME since several years. I have the encephalitis + gut microbiome dysbiosis subtype. I'm 34 years old. AuDHD, official IQ 135.
I did cognitive testing with a neurochiropractor that confirmed that my cognitive abilities are like a demented person 70+ years old. My reaction time is horrible. I have executive dysfunction and profound memory problems. Terrible dysautonomia ans insomnia. I can't socialize bc I don't have concentration enough to listen to people talk.
Whereas I didn't have ADHD learning disabilities as a child. Luckily I know my infectional causes to my encephalitis and AuDHD. Tickborne encephalitis and streptococcus mainly, among other bacterias and viruses. Doctors are too far behind on the research, most of my help I have gotten from other ME ill people online and practitioners who aren't medical doctors. Most of my testing for my causes I have done myself, to great success. I just wish doctors would take my knowledge seriously
Have you found anything at all (supplements/herbals etc) that have helped with the cognitive impairment?
I agree my situation mirrors you in many ways. Best wishes to you and I hope you recover 100 percent. I hope everyone does.
@@katnisseverdeen2.016 Yeah sure but what works for me might not work for others. What works for me are things that I'm deficient in. I don't supplement to alleviate symptoms, I supplement to treat my causes. My top supplements are butyrate, ginger, artichoke, zinc, magnesium, calcium, potassium, B2, B6, DHEA, among many others. LDN and quetiapine. I have tried a lot of nootropics for cognitive issues, in my experience they help 5% at best, not nearly enough to make a difference. Aniracetam is my top choice but doesn't pair with quetiapine. FMT has helped a lot though.
@@Angela-zj5sx I wish you the same, may you fully recover and have life quality. My sister also has ME and pretty much all of my friends, I lost most of my healthy friends but gained many ill ones
I am very glad you were able to discover some things that help using your own experimentation. I wish you didn't have to do that. We need genome-proteome testing to identify individual vulnerabilities, because it is likely the optimal treatment need to be tailored for each individual. I hope you are able to continue improving! - Jarred Younger
If someone was to run this study again I would suggest a T-1, the tests run before they even prepare for the trip into the lab. It can't just be the day before because we are often crashing having prepared ourselves to leave the house but something like a week before and asked if we are at baseline or not. The mere process of travelling to a lab will crash many patients so they are already impaired when they turn up and while its not a significant difference (as in it could happen just by chance) it is suggesting that some of the cohort is already crashing at T0. They didn't test it so we can't know but this is one way I would change the study design because crashing is not about maximum exertion on a bike its about the shower we took the day before we even turned up to the test.
So true, Paul.
I would support that protocol alteration. Even a separate protocol doing the at-home cognitive test only would be useful to see. - Jarred Younger
@@PaulRKeeble quite right! There probably should be a pre-shower test. Also, I’d like to see CPETs with post-tests comparing subjects who lie down immediately after the test vs. those who do not. After I took a Workwell CPET, they allowed me to lie down on the floor next to the machine while they analyzed the data. I suffered minimal aftereffects, even less than I do from taking a shower, which is on a different floor from my bed.
if you constantly feel like you are drowning or dying theres no space left for cognition.
100%.
@@arasharfa agreed
😊😊😊😊😊😊😊😊😊😊😊😊😊😊
My cognitive PEM often starts later than my physical PEM. Wandering off in the middle of doing something & forgetting all about it, trying to retrieve a word and coming up with something that sounds like the one I want but has a totally different meaning ... it's maddening!
Comparing test scores of people with ME and healthy subjects is useful, but what may be more relevant to individuals and to medical science to gage the effects of ME could be a test that compares individual patients’ functioning before developing ME and after being afflicted with it. A pee-ME high-functioning person might experience a serious reduction in capabilities, yet test average with these instruments. Or did the researchers find a way to account for such a possibility?
I think I would 100% fail the cognitive tests. I’m not stupid. I’m quite intelligent but the energy it takes to do cognitive stuff any more I simply can’t access the energy needed.
Same
I would bet that the IQ tests (at least the short ones) would show normal IQ in ME/CFS. I actually don't see classic IQ included in most cognitive studies of ME/CFS. What you are describing is similar to what other ME/CFS individuals say. - Jarred Younger
Thank you! Happy Thanksgiving! 😎
Definitely makes me feel better. I've talked about feeling cognitive loss, but most people don't get it. Now I have an excuse! ;-). Thanks for your continued sharing of data!
Agreed! It’s hard to put your finger on/explain how this feels in everyday life.
Not an excuse, but a reason. 😉
Definitely. The next step is to figure out *why* the cognition is impaired. Is there a general slowing of neural transmission, is it microglia interference, or something else? I haven't seen convincing evidence that the brain is damaged in ME/CFS, so it should be the case that interventions help. - Jarred Younger
@ The only “proof” of condition during my long COVID was a brain scan showing lesions throughout. Unchanged in a follow-up 6 months later. Coincidental or causal, I don’t know, but at that point I at least knew I wasn’t crazy!
No question that long cov, me)frs affects congniriin, exec processing, loss of IQ down 6pts, but tests that verify always helpful
Just lost my dream job I worked 23 years to get due to coming down with ME/CFS. I was a senior strategist and lost my job due to cognitive issues.
I'm sorry you lost your dream job. I know how tough that can be. I hope your health improves and something even better comes along.
I am very sorry to hear this. I am wondering if you have had an opportunity to be tested clinically to see what specifically is going on with the cognition. - Jarred Younger
This is me, high IQ and spots of dumb as hell. Not Alzheimer's.
Same here
Same
Yeah, I haven't seen anything that looks like neurodegeneration like Alzheimer's, Parkinson's, or multiple sclerosis. Without neural damage, it should be easier to treat. - Jarred Younger
Thank you! I believe the brain draws upon something like 25% of the body's energy, so it's sadly little surprise that cognitive function is impaired in ME\CFS sufferers. But it's good to see a study that has tried to quantify it.
So glad to see this study! It’s very important to have tests that are appropriate for our illness. I hope the computerized tests used in the study will be accessible for patients.
I have me/cfs and also got Long Covid, which resulted in cognitive impairment severe enough that I had trouble speaking. Because Alzheimer’s runs in my family, and that was my main concern, I went in for testing at a geriatric clinic. The doctor didn’t know and didn’t care about any impairment that could be caused by LC and me/cfs. So she gave me a brief screening test, which showed some impairment, and insisted I needed to have a 4-hour test from testing psychologists. I declined because I knew I couldn’t even sit up that long. Also, she said that I couldn’t be tested by the psychologist recommended by my me/cfs doc, since she claimed that psychologist’s test would only be appropriate for stroke patients. She wanted me to get an Alzheimer’s-specific assessment, so I could participate in an Alzheimer’s drug study. The drug in question has severe side effects, including brain bleeding. Fortunately, my cognition eventually improved along with my other LC symptoms - so declining the test and study was the right choice for me.
Thanks for the story. I am very glad the cognition issues resolved somewhat. The cognitive testing world is a bit complex - so much so that the PhD's who do it need a special training tract and internship (neuropsychology) from the other clinical psychologists. - Jarred Younger
@ thanks for your comment. I’m fortunate in that, even though I never got neuropsychiatric testing, my husband is an academic cognitive psychologist, so he’s been able to observe my cognitive journey.
Unfortunately I found that having the screening test result on my medical record prevented me from getting long-term care insurance. So we need to think carefully about getting such testing through our health care providers. I assume testing via research would be confidential, but in most cases we don’t find out our individual results. (The Bateman-Horne Center has been an exception in this regard, in my experience. But BHC forwarded the results to my PCP, so they got into my medical record.)
When my mother was diagnosed with Alzheimer’s, this triggered a reporting requirement that lead to her driver’s license being suspended. In her case, it was a godsend, as she was convinced she didn’t have AD. I’m not sure what level of cognitive impairment leads to a requirement for new written and driving testing to maintain a license. If we’re too impaired to drive, of course we should stop. Just something to keep in mind re: cognitive assessment.
@@youngerlab Just wanted to highlight the new open-access journal article, “Modafinil: A Review and Its Potential Use in the Treatment of Long COVID Fatigue and Neurocognitive Deficits.” Dr. Bateman prescribed modafinil to me for me/cfs and it helped a lot with my brain fog and daytime sleepiness. Hope it continues to be studied and trialed by doctors.
I had an education psychologist give me tests and they said I couldn’t put a structure on things and verbal memory was affected….the front bit of the brain was affected…..I was a student before and had suddenly huge problems with thinking in certainty ways after a virus .Telling me this helped explain stuff and reduced my angst and led me to find different ways of using my brain. In the end I got an art degree as my brain could still do this…..this helped enormously in getting back socially and getting my confidence back.
Thanks for sharing. It can be helpful to get the cognitive testing done to isolate the impairment because there are interventions (like specific cognitive training games) that can help. Or at least knowing the problem can help people come up with helpful workarounds. I don't know what tools the neuropsychologists have to help patients now. - Jarred Younger
I am so thankful for your work! And I am also super happy that you have this chanell :) I don't need to read complicated studies and follow latest research, I got you! :)
the cognitive impairment to me is because of a global lack of energy in the brain. it reduces the bandwidth and lowers the panic threshold,
This is how I’ve felt too! No juice to power the brain.
I have been trying the relatively new supplement called IGF-1 and it seems to be opening up pathways. Its still early on but thought I would share. I am optimistic.
@@Angela-zj5sx this is not legal everywhere is it?
@@arasharfa I don't know why not, I buy it through Nutronics Labs and Stew Peters and Christopher Key advertise about it everywhere. I need to research it on more but I definitely noticed a difference in blood flow even after just one dose.
Yes, it could be inadequate oxygen, glucose, or ATP reaching the critical brain regions. We are looking at those things as well. The panic threshold could be caused by low glucose or oxygen, or could be a result of inflammation. - Jarred Younger
Cognitive testing usually focuses on assessing a single function at a time. But in real life, cognitive work requires an integration of several functions, and I think that cognitive testing for ME/CFS (and perhaps for other conditions too) should measure performances in the context of this kind of workload.
It is an interesting idea. It could be that individuals with ME/CFS have a specific dysfunction in the ability to filter out unimportant sensations. Like the ability to hear a specific voice in a crowded room with many people talking. One of the major tasks of the brain is blocking out most of the sensations and perceptions being generated. It would be very difficult to perform cognitive tasks with the function impaired. - Jarred Younger
@@youngerlabDr. Bateman has told me that executive function tends to be impaired in me/cfs. It certainly seems to be the case for me. When I was still working I had to adopt flow charts to organize the tasks I had been doing unaided for several years before I got sick.
Scroll to 18.30 mins… THANK YOU for this important validation!
I question whether repeated cognitive testing would actually be of benefit to patients, especially more severe ones. At my most severe, my greatest obstacle to healing was doctor appointments -being asked to do cognitive testing would have added additional burden without affecting the treatment. I don’t think a blanket recommendation like that should be made.
As always, thank you so much!
I can see the downside of the testing, though cognition is considered when judging the degree of disability. It can help with insurance, disability claims, and other aspects of dealing with ME/CFS. People generally do a poor job predicting their own cognitive performance, so the standardized tests can be important. It is also one of the few areas in ME/CFS where there are actual objective tests that are accepted by the medical community. But it will be much more important for some individuals than others. - Jarred Younger
@@youngerlab For demonstrating disability, absolutely!
It’s the idea of a *blanket* recommendation that is a problem. We have enough trouble making doctors understand our needs. Having to argue about why we don’t want to do tests that won’t change the course of treatment (or doing the test) can be a significant burden.
The stronger results for the more complex tasks lines up with anecdotal experience, as well. The 4 simplest tasks in this study seemed pretty... well, simple. Unless I misunderstood. So much trickier to detect the differences between groups with super simple tasks.
My 2 cents: They should do a study where people have to do complex tasks for 3 hours (for example) continuously. I would predict that the healthy group would show some fatigue, and the CFS group would show a drastic drop in performance. No exercise equipment needed for this study!
Thanks as always for these videos and for your work in general, Dr. Younger.
I'm very interested to hear more analysis on the maze task. Fingers crossed the lead researcher gets back to Dr. Younger at some point.
I suppose I am extrapolating just from myself. Maybe my experience isn't typical.
@@fitasaviolin I haven't gotten a response yet. I'll send another email. We are in some committees together, so I'm sure I will hear from her soon. - Jarred Younger
It's extremely important to point out these are the mildest affected ME/CFS patients since they are capable of coming to a clinic.
Also, it would be very interesting to see a comparison between healthy controls and ME/CFS patients when there are distractions involved, such as quiet music playing etc. Demands of real life on cognitive function are not comparable to a quiet peaceful room in a lab. People talk, music plays, someone taps you on the arms, and it's those moments that are the most demanding on ME/CFS sufferers. For example, back when I was still mild I once found myself completely unable to step on an escalator because music was playing and my brain couldn't catch up with the movement of the steps and what my body needed to do to step on them while in motion
I agree with these points. I did a video a while back on the importance of including housebound and bedbound participants. On the other point, I think a distraction study would be interesting. - Jarred Younger
Thank you for explaining ME/CSF research in a way that makes sense! It's all so interesting!
I would love to see one cohort given the most difficult test first. Would our results be better than what shows in the study because our brains are fresher? Or is the task itself that overwhelming?
I can't remember if they counterbalanced the order of how the tests were presented, but that would be a good idea. I am pretty sure they didn't report order effects, so I am guessing they started with the simplest task. It is a good idea to see if there is "bleed-over" as you mention, where one task affects performance on a subsequent task in ME/CFS. - Jarred Younger
Thanks Jarred, brain inflammation no matter how you got does bring down brain function. Peace
Yes that would be my particular angle on understanding the cognitive impairment. We've known for a long time that general inflammation in the brain slows down even simple psychomotor function. - Jarred Younger
My girlfriend had four day neuropsych testing done by Dr. Lange as part of the objective data we presented for her disability claim. Dr. Lange really cares, a sweet women. GF has found a program that is actually helping her now, finally. Might be interesting to get her retested. We also did the two day CPET testing separately as part of the disability claim. With that data she sailed through disability approval. Would be happy to share the test data with you if you are interested. And the medical profession, as a general rule, still has no clue and just throws their hands up.
Dr. Lange is definitely in it to help people. One problem I am seeing now is several of the "classic" ME/CFS researchers have been retiring. I am looking really closely at the new scientists that will hopefully take over and solve the puzzle. - Jarred Younger
@@youngerlab Since it seems similar to long Covid, I was hoping the money put into that would spill over to ME/CFS. I spoke with a well known expert at Vanderbilt who wrote the diagnostic criteria for ME/CFS. Can’t recall her name. She stated that the interest, focus and money that was being given to ME/CFS was now being directed towards long Covid. She said there was nobody at Vanderbilt that was treating patients either, which is why I contacted her. I have not seen much fruit from long Covid research. In the end ME/CFS may not be a medical condition treatable by dissecting the biology. My girlfriend’s improvements from her current attempt to recover is being treated by a neurologist who recovered himself. I am optimistic that this will work. The mind controls the body.
I very much appreciate your updates. Presentation is perfect and easy to understand. I do, though, spend too much time wondering who the artist is of the picture behind you and if the image has a name.
SO easily distracted. 😂😢 it certainly helps that I have a sense of humour. Cheers..
Thanks! The one is by Elena Schweitzer. I forgot the name of the piece. 😄
Do you anticipate that these findings would apply across into LC too? I know what I think, but keen to hear your thoughts
Yes, there are a few studies showing that even simple reaction time is slowed in Long-COVID. My hypothesis is that the same mechanisms are involved in both conditions. - Jarred Younger
Yes definitely to cognitive rehabilitation.
As someone with severe ME/CFS when I was in the moderate stage I would have people tell me it sounded like I had a stroke the way that I would talk that was because my brain was shutting down. I had went too far over my energy limit when that happened.
I am entering my 30s with years of severe cognitive impairment.
Please, what do I do to fix it. I can't live like this.
Hang in there. Answers are coming, friend. We're in this together.
Mindfulness, meditation, emotional processing…potential programs from Alan Gordon, Gupta program, Dr Levine, poly vagal theory…also sunlight/near infrared light…see medcram research. Our bodies are amazing and so are you 👍🙏
What supplements, diets or other protocols did you try so far?
I hope you are able to get this solved. Cognitive therapies are outside of my area, so I don't have great recommendations. There are so many tests and interventions that might help, but it can be hard to get in with the needed experts to figure out what you specifically need. My main approach is reducing inflammation in the brain, which may or may not be the issue you are struggling with. - Jarred Younger
Ive been knowing and saying this since I had covid. At the time i thought it was my depression meds. But its definitely brain inflamation from long covid.
That seems to be the case for many people. Regarding anti-depressants, there is a pretty wide range of effects on cognition (ranging from negative to positive) based on the class of medication. - Jarred Younger
As someone who games daily. Im more sensitive to reactionary times. 4 or 5 days a week i cant play competitive as my reaction and thinking are so delayed. I have no idea of the cause, im not sure its PEM. I just have good and bad days. It feels like concusion. But my reaction times are massively delayed. Im always 100% commited.
Also in conversations im unable to respond to complex questions immediately. Ill sit down and 5 minutes later, everthing will start flooding in, then i get frustrated why i couldnt think and respond at the time of that conversation.
Not sure if anyone else has ever experienced this but a few years back i had what felt like a cascade of water run down the back of my brain. Like there was fluid or something was blocked. Everything immediately cleared up and my energy levels rose to where i could run and do exercise.
I woke up the next morning and the pressure and ringing in my brain had returned. Along with the fatigue and brain fog/fire.
So for me atleast i know what i have is 90% neurological and cureable. Even though ive been suffering for 40 years.
The water on the brain feeling comes up in several neurological conditions. It can also happen with Chiari malformation. The brain doesn't have sense receptors, so the dura is the deepest place that could detect abnormal sensations. It is possible for increased pressure within the skull to produce sensations like you describe. Many of them can be detected with standard clinical neuroimaging scans. - Jarred Younger
@@youngerlab❤
U described how I feel today. Like my brain is hot, fuzzy, wobbly. This doesn't happen real often, this bad. Having a hard time typing. U are not alone, it helps me to read ur post. So I don't think I'm crazy.
I’ve been wanting to ask. Anhedonia, no emotions, no feeling, empty numb brain has been a common symptom for CFS. I see LC folks say the same and both say it often will lift late evening.
*I don’t see any research on why it would lift and doesn’t that mean no treatment can work to restore things?
Is there any research or ideas? Any hope?
The brain function not working is torture. There has to be some meds or does the fatigue have to be treated and then the brain will follow?
There is some evidence that cortisol is too low in the morning for people with LC or CFS. Then it normalizes over the course of the day. Try taking a ice cold shower in the morning and see if you're still anhedonic afterwards.. ;)
@@awaken69interesting. Wild if it’s just cortisol but perhaps. Crazy feeling losing your inner world. Not schizo but I get all the Schizophrenia negative symptoms. So uncomfortable. It’s definitely different from depression & docs don’t seem to realize it. I’ll try the cold shower😊. Next I’m buying all the meds online. Sure hope there is something. Seems like they should have some ideas to treat this.
My belief and personal experience is that the liver two phase detoxification eventually filters the overloaded system and late in the day ' burns cleaner' with cleaner fuel. Chines Med calls simular 'Stagnation'.
@@spocksdaughter9641 very possible. They seem clueless. Bothers me, so bizarre and makes me think no meds will help as we need to know why. Doesn’t seem to be neurotransmitters. You might be right.
Many important points here. There are many chronic conditions that change drastically between the morning and evening. Just as an example, many with rheumatoid arthritis will see improvement as the day goes along. There are inflammatory, hormonal, and several other possible reasons. Things that develop over the day are hard to research, which is why the main thing I want are devices that allow testing at home over several days. My next video will probably be about a continuous inflammatory monitor that could explain this effect you are describing. - Jarred Younger
Could sgb help with the brain inflammation Stella ganglion block
Good question. I think it could help. I plan on doing a video soon on sgb, but I have not done a direct test of it myself. - Jarred Younger
I have been severe, with completely homebound, functionless periods with severe narcolepsy-style, dropping-anywhere somnolence, and I have been in remission, each more than once in my time with ME (decades now), and I have rarely felt particularly impaired cognitively as a result of that condition. Certainly I have been uninterested in cognitive tasks, and less likely to do them well in those states, for reasons of exhaustion and physical misery, but that is not different in kind from when I have been normally sleep-deprived or otherwise sick. Does it render me murky when my brain feels as though it will swell to the point where my eyes will pop from my sockets? Yes, but it does not leave me less cognitively impaired to be doubled up and writhing with uncontrolled kidney pain. Active illness always reduces cognitive function, for fairly clear reasons. The question is how much and why.
I can see all sorts of possible stories with ME. Its particularities may actually make it inevitable that people have bouts of cognitive difficulty. Pain problems could do that as well, taking care of both my cases above. That could be so and we can still observe that everyone with significant illness faces cognitive challenges at certain junctures. We may find certain illnesses that target or involve the CNS in ways that have significant impacts on brain chemistry both entail special cognitive effects and predispose people to develop certain mental illnesses (especially depression and anxiety, but possibly others) at higher rates than the general population. Or this kind of thing may not be so. Any long-term illness brings some level of cognitive difficulty from time to time and raises one's odds of breaking one's brain while trying to cope with the typical cascade of life changes long-term disease brings. We could lay out a bunch of examples and possible explanations along these, but this isn't the place for it and my head hurts too much already for having overdone a minimal bit of housework. The upshot is this paper and your video wade into very complicated territory.
Teasing apart where the lines of causation tangle with varying levels of correlation is no easy task, and no one study is going to answer all our questions. A lot more work remains to be done. It is always good to see people like Lange's group care enough to do some of the early spade work to unearth some evidence and to frame some useful questions. I wish they had done a better job of being clearer in the images about the relative data values. People get the wrong impression easily from such images - even people who ought to know they need to read the text carefully to understand such graphs, since, oddly, authors rarely do a good job communicating useful information in the graph visuals. That said, I am glad they have done what they have done with this study. It does not provide any answers, but it contributes to future answers in a field that gets fewer contributions than we need to see.
The average ME patient isn't able to write such a long and coherent text. How sure are you of your diagnosis?
In this case, it is the log10 transformation that makes me unable to judge the magnitude of the group differences. I prefer to use raw values in figures for that reason. - Jarred Younger
Depressing. I had guessed, as I have noticed after 2 years at my library there are still things I need to ask about, even if I learned it before. I only work ~3 hours/week, so some of these are things I don’t practice a lot (new patron accounts). What can we do about this? Or is there anything we can?
There are pharmaceuticals and botanicals that can help more with cognitive issues. Pycnogenol (which we've discussed previously) is one, and palmitoylethanolamide is another. But we'd have to run clinical trials to know if they are helpful with cognitive issues in ME/CFS specifically. - Jarred Younger
I had severe difficulty 14 years ago and got away from some environmental issues because I was on palliative care. My function is slightly better yet overall decline. Many don’t have reserves and with every supplement I could afford, it isn’t holding back the ME/CFS nor the other issues and COPD-I was never a smoker. Too many impairments and even though I was born with it, there is not help for it. I received help from ASA as a child and trying to keep stress down, well we try. 😊
Hi I am Dr Suryanarayanan D from India .I am unable to see your podcast No 41.Can you reload the video.😊
I'll check it and see what I can do. I have been having some problems with the platform thinking I am a company selling medications. It is probably an AI thing based on the terms I used in my presentations. I've been trying to work through the issues. I'll see if there are any alerts on #41. I don't know how it works, but it is also possible the video was blocked from some regions because it was about Veterans. That word might have triggered something. Not sure. Thanks for letting me know. - Jarred Younger
So....in conclusion, every single one of our brain cells is well and truly knackered.
I can't argue with your alternative phrasing. :-) - Jarred Younger
Is it possible to have ME/CFS and not show inflammation markers in blood tests? I woke up on day last spring with hand and foot joint pain, muscle spasms and fatigue. I wasn't sick, just achey and tired. Within a week the tendons in my hands ached everytime I moved them. The cramps pulled muscle/tendons off bones in my feet. The foot and hand joints became. arthritic. My neuroconductive tests revealed very little signal getting through to hand and feet. I test weakly for Lupus, but not RA. I have the HLA B27 genotype. I am working with a rheumatologist but am in pain all the time and haven't gotten a diagnosis yet. Weirdly with all the aches and pains, my inflammation markers are normal. I also am recovering from a serious TBI from 9 years ago, but this seems really different from that.
Have you had vitamin/mineral level testing done?
I saw another researcher on ME/ CFS say that the disease is found in the nervous system and tissue. Therefore, it will not be picked up in a blood test. Nevertheless, my blood test always comes up with high inflammation numbers that my doctor totally ignores.
you have lyme. Get checked at vibrant wellness.
@@shawnshawn7477 Don't just tell people that. You have no idea.
I have not had a research participant who presented in that way. Small fiber polyneuropathy can feel like your description. If the physical damage to the tendons have been confirmed, it (to my knowledge) would suggest a neural conduction issue more than an inflammatory one. There are autoimmune issues that could disrupt transmission, but the first place would be to rule out any vitamin or mineral deficiencies. I'm guessing circulation issues and diabetes have already been ruled out. - Jarred Younger
This is why ‘Effort Preference’ is a terrible term when used in ME/CFS studies like that NIH one recently. They didn’t take into account that neurones poop out of energy therefore it’s not about the patients ‘preference’
It’s about ability and disability. This study is a good example for why ‘Effort Preference’ needs to be removed from that study and an apology by the authors given to patients
I know there is a small literature on "effort preference", but it is outside of my area. In my field of inflammation and neuroinflammation, it is expected that someone who is ill will choose an easier task. If someone has a 104F/40C body temperature and can barely get off the couch, they won't be choosing to do yard work. They might be able to get up for a drink. But we wouldn't consider that decision a preference. We see something similar where people with fibromyalgia become more hesitant to do activities that could exacerbate the pain. I would have to read the cognitive literature more to know what claims are being made about effort preference. - Jarred Younger
I had these exact tests (the one back, two back and maze) in my Alogabat [autism drug by Roche] second phase study last year. The maze was a nightmare lol
Ha yeah I think those tests are better to give than to take. 😀
@youngerlab especially with undiagnosed Athsma ME APD (at the time) and a broken brain 😜 but hey I have 20/20 vision so all is well 🤣
Taking mushrooms is a form of cognitive rehabilitation. Talking to a psychiatrist is a joke.
We are running a psilocybin trial for fibromyalgia right now. For pain, though, and not cognition. - Jarred Younger
I would love to see if you've done any research into the potential causes being ionic bonding or ionic pathways between cellular membranes at the molecular level basically look into Michael Levin's work on bioelectricity and disease?
Levin's work, primarily conducted at Tufts University, explores how bioelectric signals and ion channel dynamics play crucial roles in cellular communication, tissue patterning, and potential disease mechanisms. His research suggests that:
1. Cellular electrical communication is fundamental to:
- Tissue organization
- Developmental processes
- Potential disease and healing mechanisms
2. Key concepts from Levin's research:
- Cells communicate through ion channels and electrical gradients
- Bioelectric signals can potentially "reprogram" cellular behavior
- Electrical/ionic disruptions might contribute to disease states
Regarding ME/CFS specifically, Levin's framework suggests that ionic pathway disruptions could potentially:
- Interfere with cellular communication
- Disrupt energy metabolism
- Contribute to systemic dysfunction
While not definitively proven for ME/CFS, Levin's research implies that:
- Ionic communication errors could potentially be a causative or contributing factor
- Targeted electrical/ionic interventions might offer therapeutic possibilities
- The disease might involve complex bioelectric signaling disruptions
This perspective shifts from purely biochemical models to include bioelectrical information processing in understanding disease mechanisms.
I'll check his work out. I'm a clinical scientist, so my cellular and molecular work is limited, but I'm always looking for new ideas that can be brought over to human participants. Thanks - Jarred Younger
Dear God
I am completely unfaciltated!!! No one has PROPERLY DIAGNOSED my brain!!!
I do not have competent MD’s in ANY area!!!
My animals received more definitive attention!!!
Does CBD/THC help insomnia when microglial symptoms occur
I helped with the development of such a test (actually a more advanced version) 30 years ago in the Netherlands. I wasn't able to do T4 as I lost consciousness due to exhaustion. But I have ME, not 'ME/CFS'. The difference between 'ME/CFS' and HC is very insignificant compared to the difference between ME and HC. Further, I performed relatively best in the most complicated test. That is another difference between ME and 'ME/CFS'.
I'm confused because I was under the impression that ME and CFS are synonymous. I've seen you make the distinction on here before but I've not found this distinction being made anywhere else. In fact most places explicitly say something like "ME also known as CFS".
@@chimpwithagun If you do more reading on the history of ME you will find answers. Looking into the work of Dr. Byron Hyde would be an excellent start.
@@chimpwithagun ME/CFS is the general term used, but there are some distinctions that can be made. CFS typically describes profound fatigue that is not helped with rest. ME/CFS adds neurological symptoms and post-exertional malaise. - Jarred Younger
I'm wondering how loss of consciousness is scored in the testing protocol. I could see some researchers removing that "incomplete dataset", but that would be missing the point. - Jarred Younger
@@youngerlab Adding a requirement makes 'ME/CFS' a subset of CFS, not a more general term. The symptoms of ME are different. Fatigue and malaise aren't characteristics of ME, but it has many symptoms that aren't in CFS or 'ME/CFS' or are more specific. Also, ME is a disease. In addition to symptoms, it has signs and pathology, which CFS and 'ME/CFS' lack. So the letters ME in 'ME/CFS' should rather stand for 'Malaise after Exertion'.
All these tests, have had since 1988. Have degrees in Health Ed. Also my own study published in 2000. I have watched all this since diagnosed but some tests just wasting time. What we need is to find what caused this horrible illness then we can better know what we need to help us. This just seems a waste of time. Sorry just sayin.
I understand the point. One thing I didn't mention is that this analysis is part of a larger multi-site study that gathered experts from several fields of research to investigate ME/CFS. They don't know which tests will end up being the most valuable. - Jarred Younger
Water filters dont stop neuro problems. Good shit easy lawsuit baby
Hi how are you
I'm sorry, but this is the biggest waste of money and time. I hope RFK starts sending these people home to find new careers. Start believing patients. The medical system is so backward with all this stupid "data" instead of treating people and believing them.
RFK will do exactly what?
The "medical system" is different from researchers. Other countries have different and better medical systems, but they rely on science researchers like Dr. Younger. Many doctors do listen to patients, you haven't found the right one yet. Dr. Younger has helped thousands of people with his research on low dose naltrexone. He is one of the very few doctors in the U.S. researching me/cfs and Fibromyalgia. Data is part of science; medicine is based on science and that is a good thing compared to the crazy medical practices of the past. Bleeding people to heal them had no science behind it but was practiced for a long time.
@@BSLO48You do realize that the US United States medical establishment has been fabricating much of the " science".