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Hi how are you

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 at o before and had huge problems with thinking in certainty ways. 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.

Scroll to 18.30 mins… THANK YOU for this important validation!

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.

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?

Water filters dont stop neuro problems. Good shit easy lawsuit baby

So glad ppl r collaborating. It’s horrible living with ME CFS and seeing how clueless drs r.

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.

My girlfriend had four day neuropsych testing done by Dr. Lang as part of the objective data we presented for her disability claim. Dr. Lang 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.

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.

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, 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.

Please watch the latest presentation given by Dr. Adams from Arizona State University on fecal transplants for "autism". The metabolites are causing ALL these issues. My daughter became "regressive autistic" the same time I became CFS/PEM/Depression Big Pharma will do anything/everything except start giving fecal transplants to help people because there is no money in it. It was a closed meeting for parents/investors, but if you provide your email I will send you a copy when he releases it.

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.

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 am entering my 30s with years of severe cognitive impairment. Please, what do I do to fix it. I can't live like this.

Hi I am Dr Suryanarayanan D from India .I am unable to see your podcast No 41.Can you reload the video.😊

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?

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.

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

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?

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'.

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 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 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..

Taking mushrooms is a form of cognitive rehabilitation. Talking to a psychiatrist is a joke.

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.

Thank you! Happy Thanksgiving! 😎

Could sgb help with the brain inflammation Stella ganglion block

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.

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?

Yes definitely to cognitive rehabilitation.

doctor, my daughter and i both have ME. We also have a history of infected upper teeth with exposed infected roots in the floor of the sinuses. the dentist said about 10% of people have this condition, thin upper jaw bones where the tooth roots are exposed in the sinuses. I am also a farily intelligent person who can no longer really cognitively function very well. But It occurred to me that maybe this constant assault of pathogens getting from the mouth into the sinuses, very close to the brain, plays a role in making us so sick. We both have our teeth under control now and we are not better. But just wondering if it is a condition that folks need to look for and take care of sooner. It was a constant battle with dentists who want to save these awful teeth. they need to stop doing that. It cannot be good.

I think a lot of my cognitive dysfunction is from stress. Focusing on my finances causes stress and the cognitive dysfunction from that. Another example would be taxes I get stressed I can't focus or concentrate but have no choice but to work through it. Eventually I overcome the stress and am able to make progress. Another would be trying to trade stocks very stressful. I get fatigued very quickly looking at charts and trying to pick stocks I think I might be able to make money off of. I trigger the stress response and the task becomes very difficult. Again if I just work through it eventually the stress goes away and I can make some progress. Conversely I can look through adds on harbor freight or comp usa all day long without invoking that stress response. I can read articles on Science based medicine and while I am using my brain it's entertaining no stress response. Watching a show like 60 minutes again entertaining no stress no cognitive dysfunction. There is the issue of mental fatigue also. I may be real sharp for 5 minutes but I can't do mentally demanding tasks all day long. Similar to what many are required to do occupationally 8 hours a day 40 hours a week. No way in hell I could do something like that. I hate admitting this cause I know CFS deniers use this type of thing to promote their agendas. But it is what it is. It never happened 28 years ago before I got sick.

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

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.

if you constantly feel like you are drowning or dying theres no space left for cognition.

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,

Do you anticipate that these findings would apply across into LC too? I know what I think, but keen to hear your thoughts

Am having deja vu for that Madeleine l'Engle novel that I never read in highschool. Must go read it.

Thanks for short videos

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.

How about disregulated adrenalin?

This is me, high IQ and spots of dumb as hell. Not Alzheimer's.

Thanks Jarred, brain inflammation no matter how you got does bring down brain function. Peace

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!

No question that long cov, me)frs affects congniriin, exec processing, loss of IQ down 6pts, but tests that verify always helpful

Congratulations on the grant acceptance!

Have patiently waited since diagnosis in 1985 at 35. Have kept abreast of few studies thru the years before internet. Since have got 2 college degree’s and started and facilitated a support group at hospital for 23 years. I have my own study published in 2000 in Journal of Musculoskeletal Pain. In all this time I have seen so many wasted studies that’s why we are so far behind. One study used a hairbrush and ran it down a arm to gauge the number corresponding to the pain number, what a waste. We need real medical studies not studies like that. We need Real trials on drugs and supplements. Seemed at first studies were done just to get study money busy money but studies did not lend any real useful results. Only hope now we can have real studies with doctors and clinicians that are serious to find a cause or cure. Enough different hypothesis about how and real studies promoting real help.

Time od day blood was drawn..CRP elevates as day goes on...may go down with a nap..then back up