I hope you are well. Visiting your channel I have seen your all videos and content are very good but your video SEO optimization is not professional. Perhaps you are busy for managing the channel
@PCAGA2298Ай бұрын
Thank you for the presentation
@minghaogong23432 ай бұрын
This chemical sensitivities are so important in ME communities! Thanks for bringing out!
@MsFattyb4 ай бұрын
Happy birthday Dr. Jason!! You guided me on my path in psychology at DePaul in 1980-1983. You are amazing and I’m so happy to see the joy among a current generation of graduate students. Michael Shain
@KittenCasserole4 ай бұрын
Happy Birthday Dr. Jason! Thank you so much for your prolific and impactful contribution to the ME/CFS community over the decades ❤
@mikemartinez28574 ай бұрын
Oxford Resident here. It works
@michiganshadow5 ай бұрын
Michigan shadow a Social Engineering Corporation is seeking assistance in Alpena Michigan thank you Leonard Jason
@HopeHulette8 ай бұрын
My energy envelope is empty! You make a great point for asking what would you do tomorrow if you had the energy and could physically do it. I have so much I want and need to do. The issue is my body says it’s not happening. I can’t find a doctor around to understand and treat me.
@Corinthians--cb9dg8 ай бұрын
for the commenter below - I am living proof that a severe Epstein Barr viral infection in mid life - is forever life altering - end of story period nada.
@dirkkatz1728 ай бұрын
culprit: microwaves. it can last 2 years before musclepain goes away
@jamesgordon88678 ай бұрын
In the 6th grade, I had infectious Mononucleosis in the 1960's. I am 69. Finally, a real doc to begin to explain what I have lived.😊
@genuina84229 ай бұрын
Intoxicação por ondas eletromagneticas EMF cause
@kathb16839 ай бұрын
Another great pioneer in the field!
@andrewstrakele68159 ай бұрын
I believe CHRONIC STRESS is one of the most important pre-disease factors as to why people develop Chronic Fatigue Syndrome/ME, Long COVID, Fibromyalgia, Chronic Lyme Disease, MCAS, and POTS. Eliminating the Chronic Stress root cause is required for treatment of these diseases. If the CFS/ME patient has reached the point where some movement is also possible, stretching , ight yoga, mild exercise, such as a walk in Nature, may help improve Sleep, further reducing Stress. The JUST ROB Channel offers Polyvagal exercises to calm the Nervous System and other unique information. Loss of a Loved One, Divorce, Loss of a Job/Financial Security, a Traumatic Accident or Childhood Event, Surgery, or Athletic Overtraining are all examples of Chronic Stress. But one of the WORST Chronic Stresses is if you Believe you will get Very Sick or Die from an illness. A Type-A High Achiever/Perfectionist Personality typically will place healthful activities, such as getting a proper night’s sleep, as secondary to accomplishments. Type A’s will often want to quickly resume work and exercise, rather than rest and fully recover. An acute infection, such as COVID-19, can be merely the Trigger to the complete breakdown of an ALREADY Compromised Immune System from Chronic Stress. Once the breakdown occurs, secondary infections of other viruses (such as Epstein-Barr Virus), bacteria, molds, protozoans, and parasites that were FORMERLY being held in remission will now resurface. There is also little innate Immune System response to stop any NEW infections. The exacerbation of the effects of Environmental Toxins, Autoimmune Diseases, Allergies, and other Comorbidities may further complicate the disease and make it unique to almost EVERY Long Hauler! 🙀 Chronic Stress suppresses the Immune System and Digestion, making it more likely to develop Immune System dysfunctions, such as MCAS, and poor absorption of essential nutrients, leading to deficiencies that can cause issues like Leaky Gut. A deficiency in B-Complex Vitamins can lead to Leaky Gut as well as a Leaky Blood/Brain Barrier. A leaky BBB will allow pathogens and foreign proteins into the Brain, where they may cause inflammation, leading to Dysautonomia, Brain Fog, Loss of Memory, Headache, Depression & Anxiety, Chronic Fatigue, and other neurological symptoms. A B Vitamin deficiency will also make you feel more Stressed, and the primary objective is to Reduce Stress. Deep Sleep is the ONLY Time the waste products of inflammation and normal metabolism are removed from the Brain, so reduction of Chronic Stress to allow a Good Night’s Sleep is important for treatment. Typically, a Change in Attitude is required to reduce Chronic Stress and disrupt the endless repetition of negative thoughts. LifeWithKyle discusses how he uses Meditation to Calm his Nervous System and diminish Long COVID symptoms during a relapse. He offers Guided Meditations that are designed to make one feel SAFE, reducing Stress and avoiding the “Fight or Flight” Immune response. Fasting is a good Lifestyle Change to help restore integrity to the Gut and Blood/Brain Barrier as well as repair a dysfunctional Immune System. It gives the intestines a rest from Digestion, allowing energy to be focused on Repair. Fasting is a Stress on the Body, and like Exercise, should be approached gradually, probably AFTER you’ve had success with Meditation and Breathwork. However, one should realize EVERYONE FASTS WHEN THEY SLEEP. The key is to extend the benefits of Fasting into your Waking Hours. You should start with Time-Restricted Eating, gradually reducing the time of your Daily Feeding Window until you are comfortable eating within an 8 hour or less Feeding Window. From there, you can attempt a 24 hour or Multi-Day Fast. Don’t be discouraged if you end a Fast early. You can try again on another Day. Fasting will be easier if you follow a Healthy Low Carb, Whole Food Ketogenic Diet. Dr. Eric Berg can show you how to begin. Eliminating Grains and consuming Nutritional Yeast, a great source of B-Complex Vitamins, along with other B Vitamin-rich foods and supplementing Vitamin B1, will help to restore Intestinal and Blood/Brain Barrier integrity.
@skarbuskreska8 ай бұрын
I believe you are absolutely right, because in my case I don't know of any infection I had, but I had a lot of stress, followed up by a severe Vit D deficiency, then intestine candida overgrowth, accompanied by yearly hayfever allergies in spring that had always stressed me. 2 years after onset of ME/CFS I got breast cancer on top. I did a check with my cell storage of minerals etc and I was defficient in at least half of them! Might have been that the candida was there longer, blocked minerals to being taken in, quite probably also casued Leaky gut because my brain was a bit struggling to, making frequent mistakes at work, forgetting stuff, focus was hard and I was often overwhelmed by stuff I hadn't been before. I then worsened my case by trying to activate myself. After all sport is said to be good for cancer patients and depression and I was after surgery which went well, but had declined chemo at that point as I feared I had not enough energy to go through it. So I downloaded an app and went jogging in my park, it went well for 3 weeks as I believe my adrenaline was activated pushing me until I crashed big and never fully went back to that baseline. Real life didn't stop to stress me, kids, a big household to take care of alone, little money and social security services trying to get me back into work (cancer was away at that point and for ME/CFS there was nothing in black on white, no biomarkers, noone knew the illness. My doctor trusted me and basically told me to do pacing, without really knowing much about ME/CFS, it was more of a gut feeling from her. She also didn't try to psychopathologize it and believed me when I said it doesn't feel like depression. Cancer came back after 2 years, but I detected it early, yet another surgery and I started to take antihormones bc of my breast cancer and was pushed right into menopause, which caused new stress. Difficulties with my son, financial stress, loosing friends bc I didn't call etc. I was never at a point where I was just taken care of and let my body just try to heal, it was always stress from one side or the other. I believe I could be better or at least at a better baseline if the constant little PEM crashes didn't happen regularly. Some poeple claim that my fatigue came/comes from cancer. I don't believe that. Cancer fatigue doesn't cause PEM crashes. And after surgery and cancer removed, I felt a bit better, but still had my limits and PEM.
@annalisette58979 ай бұрын
Recent research seems to show that EBV infection is likely causative for multiple sclerosis. EBV is at least mentioned in relation to ME/CFS. I wonder if ME/CFS (and Long C*VID) represent a biological process that can continue on the MS in some people. (Doctors have wondered for 20 years if I have MS but it has never progressed.) In my western U.S. geographical area we have had several terrible outbreaks of what our small town doctors called "unknown" "really tough" viral illnesses. When testing was done, results were negative for influenza. A basic pattern was that the illness began with mild upper respiratory signs. In about 48 hours the GI tract was attacked, especially intestines. Once the GI symptoms set in, neurological symptoms began. Those who got neurological symptoms were sick a long time or never fully recovered. I had one of these monster diseases in 1994-95 and never fully recovered. (Interestingly, when my friends and I got C*VID early in 2020, we were not severely ill. C*VID was nowhere near as bad as were the mystery viruses.) This video mentions gastrointestinal dysfunction preceding ME/CFS. For what it's worth, my earliest memories of being alive, maybe age 3, were that my ears made a lot of noise (tinnitus) and I felt like I would vomit. I have not had one moment in my life when I was not nauseous. I was shocked when my husband told me most people do not feel their stomachs unless they are hungry, full or ill. I cannot imagine not feeling my stomach! I have lived a long time and medical science needed to advance for me to even have a chance of diagnosis. For decades, doctors ridiculed me as mental and told me I would have to learn to live with a sick stomach. I have done my best. A diagnosis when I was a teen was that I had overactive intestines. (At that time I had normal and regular bowel movements, etc. but had chronic nausea.) Another diagnosis as a young adult was, overactive stomach and that doctor told me I was causing my own problems and needed to think differently! In 2006, lymphacytic colitis was diagnosed via colonoscopy. There is no treatment for that and I do not have severe symptoms though chronic nausea persists.
@normazuckerman251 Жыл бұрын
Excellent presentation! Thanks to Dr Jason and Dr Katz for their persistence. Thanks to this group for posting the presentation.
@KittenCasserole Жыл бұрын
Great presentation, thanks for uploading 👍
@auntmimikassieskidschannel8500 Жыл бұрын
Where do I find the assessment for PEM through Dupaul?
@KittenCasserole Жыл бұрын
Phenomenal presentation and phenomenal research. Thanks so much for sharing 👏🏻👏🏻👏🏻
@raestone-smith9884 Жыл бұрын
Thank you so much for this. I was in tears hearing so much validation and understanding. I can't even begin to imagine what it would be like to have a physician who understood this.
@erikjohnson4275 Жыл бұрын
Dr Jason never looked into Chronic Fatigue Syndrome or he would know this syndrome was coined due to a fatal exception to the EBV hypothesis. An outbreak type disease that couldn't possibly be from EBV.
@janerigg9358 Жыл бұрын
I don't understand your reply. Cog fog...please could you explain for me
@erikjohnson4275 Жыл бұрын
@@janerigg9358 Sure. The "CFS" syndrome had to be coined because the Lake Tahoe outbreak which was suspected to be an outbreak of "chronic mono" turned out not to be from EBV at all. Dr Jason thinks CFS is from mono. He's got it all wrong.
@janerigg9358 Жыл бұрын
@@erikjohnson4275 Thank you
@AJansenNL Жыл бұрын
Good presentation. One big caveat about sleep hygiene though: for some patients this advice may be counterproductive. Daytime napping may be very necessary. In an effort to eliminate that, the patient may push beyond their limits and adrenaline takes over, thus exacerbating the sleep problem. Taking the rest and sleep you need is more important. Getting dressed into day clothes can be too taxing. Etc.
@MillionsMissingFrance Жыл бұрын
Thank you !
@dori1oakes Жыл бұрын
Thank you.
@nononouh Жыл бұрын
7
@mkayewilson9805 Жыл бұрын
Thank you . Jason & Dr Bobak. This contains critical info re: community psych research and its role in advocating for social change that I wish had been available to me when I first went into the mental health field. The Q&A section features extremely insightful questions from the students attending this lecture. Kudos to all! Mkaye W
@VinodKumar-is2tr Жыл бұрын
This is a phenomenal job. Many thanks to John and Lenny! I hope we will see more sessions of this kind, from basics to advanced models, in R Siena. Thank you!
@VinodKumar-is2tr Жыл бұрын
Thank you so much, Dr. Leonard Jason and Ted. This session is so wonderful. I am a Ph.D. student at UB Buffalo. I would love to learn more from you. Could you please organize a course on the basics and advanced modeling using R Siena? We will be very thankful to you.
@KittenCasserole2 жыл бұрын
Great video, thanks for sharing. I’ve never heard the theory that ME brains are close to going into low-level seizures. That’s really interesting. I’ve been explaining to people for years that I have “seizures” as a way to explain why I can’t just speak at-will. What I feel seems like a seizure-like reaction to minor stimulus.
@talladams98402 жыл бұрын
Hello, your excellency, I am Muhamad Adam from Sudan, Darfur region, my parents are from a village called (korma) and because of 2003 war they had to leave the village after it got burned by a group of armed gun-people, it happened they made it to Alfashir safely in Alnifasha, camp as a displaced people, our income is farming not far away from the city,I am student at Alfashir University Arts Englund department, Semester 4, it happened to postpone my education because our source of economic is threatened by the same group of armed people, and we don't have guns to fight back whereas the government couldn't do nothing to stop them! I couldn't continue my education, I made it to Libya throughout difficult smuggling abuse and I am in Tripoli without legal papers, under any moment I would be in jail!; I went to UNHCR here, first time in December they told me to come back in 20th of February I went again, they gave me another appointment after three month which is very disappointing for someone in my situation, firstly I need a UNHCR documents that give me right to work or if I got caught under any moment they would know that am a refugee, that's why I have strong feeling that you would do something for a case like mine, finally thank you so much if you read my case, am looking forward to hearing from you. Faithfully Muhamad.
@owlsrace2 жыл бұрын
It will soon be 65 years since Dr Ramsay recognised ME. When is the medical world going to overcome its prejudice against post viral diseases and find a cure?
@charmianproskauer17662 жыл бұрын
Dr. Jason's talk begins at minute 5:24.
@erikjohnson42752 жыл бұрын
How the CDC fooled gullible doctors. kzread.info/dash/bejne/hHiamMuuYdHPps4.html
@charmianproskauer17662 жыл бұрын
Website for U.S. Action Working Group is usawg.wordpress.com (typo on the slide)
@lokee72 жыл бұрын
Excellent discussion. Thank you - Lenny's the best!
@haygoodpaints2 жыл бұрын
So validating!! Then the interviewers ADD & Dyslexia, was on point for personal identification! Also having 2 “before my illness”, same illness connection - I have witnessed the history! Thank you 💕
@shawnrachelstanton9362 жыл бұрын
I’ve had the same thought you articulated, Dr. Jason. It’s not at all surprising that some ME/CFS patients suffer from comorbid depression. It’s amazing that so many of us don’t!
@laurawilging58472 жыл бұрын
Thank you Dr. Jason. (Thanks to both of you). This was insightful. I appreciate your 30 years of dedication and experience working with ME. The information was refreshing and validating coming from an expert. Aside, thousands and thousands of women are developing a multitude of symptoms after getting breast implants. It’s a fight to get this medically recognized although there is old scientific research that supports correlation potential. (ASIA, siliconosis, -immune disruption etc). Women are facing blame and claims of hysteria and are being gaslight. The FDA is aware, but change is slow. Advocates(myself and others) must push on in these arenas. As you said, “new frontier,” you are on-point!
@themupsmuppet2 жыл бұрын
Lenny gets it!
@RK-yg5zr2 жыл бұрын
Thank you x
@abbul6162 жыл бұрын
Black molds are one of the underestimated leading causes of chronic fatigue syndrome. Mast cells activation syndrome is similar to CFS . Even though my disease onset started following mandate vaccines
@erikjohnson42752 жыл бұрын
Dr Jason has been told about toxic mold for 20 years. He never responds.
@rosstillman65732 жыл бұрын
I have fybromyagia over 30yrs and always put down my fatigue to that. What is the difference. I have always said I only have so ,uch energy and once it's gone it takes me days to recover. I love exercise but after a small amount I am in recovery mode again. I am now 62 and doubt I will ever be well again.
@erikjohnson42752 жыл бұрын
The CDC did not rename ME. Dr Carlos Lopez, who convened the Holmes committee, explained that the new syndrome was to FIND OUT IF THE LAKE TAHOE OUTBREAK WAS THE SAME AS THE ROYAL FREE DISEASE, ME. There never was a renaming. Did not happen. And Gary Holmes said that fatigue was the outward sign of "a possibly unique medical entity" He DID NOT SAY CFS IS JUST FATIGUE, and the directive was to LOOK FURTHER. The whole medical profession screwed up by freaking out and never bothering to look at how this whole thing came about.
@ryanneilcarr2 жыл бұрын
I agree with you. I duno why these people spread this, who dont read or know the history. Didnt this guy fall ill due to EBV? If so thats not M.E.. Shepherd fell ill after Zoster. Neither is M.E.. Both are misdiagnosed CFS illnesses. M.E. also is talking about severe end of spectrum related to Enteroviruses and a real genuine acute onset Encephalomyelitis; hence the reason for name. Ones who have actually had Encephalomyelitis. Its a neuromuscular 'motor neuron' illness and nonparalytic poliomyelitis in relationship to enteroviruses. Its not due to a lack of energy. CFS illnesses are lack of energy. The motor neurons attached to muscles have been damaged and destroyed. People who dont have this. Dont have M.E. The lack of energy people aint M.E. patients. End of story. Dont have same injuries. Encephalomyelitis means Encephalomyelitis. If the person hasnt had an Encephalomyelitis. They dont have M.E. Alot of the people who talk about M.E. dont even have it and are totally misdiagnosed.
@sueklausshow2 жыл бұрын
Living in the Chicago area, one of the most frustrating things for me is that DePaul is the only Chicago University that does any research on this. The primary research is done on the coasts or in Utah. This leaves thousands without help, without diagnosis. I thank God every day for Dr. Jason and DePaul. But we have Northwestern, University of Chicago, Rush and Loyola mostly doing nothing. I want to participate in studies, but these noble institutions could not be bothered to even stay current on the research. The AMA does so little. It should be a nationwide push to educate the medical professionals.
@bohlalemokhele38922 жыл бұрын
This is a beautiful initiative. Thank you guys, you help restore hope in humanity.
@ztrkmtrk422 жыл бұрын
Can we use siena on weighted networks.
@erikjohnson42752 жыл бұрын
No one has ever come back to Incline Village to learn the real story of how and why the CFS syndrome was coined. These "researchers" are no better than the CDC/NIH
Пікірлер
I hope you are well. Visiting your channel I have seen your all videos and content are very good but your video SEO optimization is not professional. Perhaps you are busy for managing the channel
Thank you for the presentation
This chemical sensitivities are so important in ME communities! Thanks for bringing out!
Happy birthday Dr. Jason!! You guided me on my path in psychology at DePaul in 1980-1983. You are amazing and I’m so happy to see the joy among a current generation of graduate students. Michael Shain
Happy Birthday Dr. Jason! Thank you so much for your prolific and impactful contribution to the ME/CFS community over the decades ❤
Oxford Resident here. It works
Michigan shadow a Social Engineering Corporation is seeking assistance in Alpena Michigan thank you Leonard Jason
My energy envelope is empty! You make a great point for asking what would you do tomorrow if you had the energy and could physically do it. I have so much I want and need to do. The issue is my body says it’s not happening. I can’t find a doctor around to understand and treat me.
for the commenter below - I am living proof that a severe Epstein Barr viral infection in mid life - is forever life altering - end of story period nada.
culprit: microwaves. it can last 2 years before musclepain goes away
In the 6th grade, I had infectious Mononucleosis in the 1960's. I am 69. Finally, a real doc to begin to explain what I have lived.😊
Intoxicação por ondas eletromagneticas EMF cause
Another great pioneer in the field!
I believe CHRONIC STRESS is one of the most important pre-disease factors as to why people develop Chronic Fatigue Syndrome/ME, Long COVID, Fibromyalgia, Chronic Lyme Disease, MCAS, and POTS. Eliminating the Chronic Stress root cause is required for treatment of these diseases. If the CFS/ME patient has reached the point where some movement is also possible, stretching , ight yoga, mild exercise, such as a walk in Nature, may help improve Sleep, further reducing Stress. The JUST ROB Channel offers Polyvagal exercises to calm the Nervous System and other unique information. Loss of a Loved One, Divorce, Loss of a Job/Financial Security, a Traumatic Accident or Childhood Event, Surgery, or Athletic Overtraining are all examples of Chronic Stress. But one of the WORST Chronic Stresses is if you Believe you will get Very Sick or Die from an illness. A Type-A High Achiever/Perfectionist Personality typically will place healthful activities, such as getting a proper night’s sleep, as secondary to accomplishments. Type A’s will often want to quickly resume work and exercise, rather than rest and fully recover. An acute infection, such as COVID-19, can be merely the Trigger to the complete breakdown of an ALREADY Compromised Immune System from Chronic Stress. Once the breakdown occurs, secondary infections of other viruses (such as Epstein-Barr Virus), bacteria, molds, protozoans, and parasites that were FORMERLY being held in remission will now resurface. There is also little innate Immune System response to stop any NEW infections. The exacerbation of the effects of Environmental Toxins, Autoimmune Diseases, Allergies, and other Comorbidities may further complicate the disease and make it unique to almost EVERY Long Hauler! 🙀 Chronic Stress suppresses the Immune System and Digestion, making it more likely to develop Immune System dysfunctions, such as MCAS, and poor absorption of essential nutrients, leading to deficiencies that can cause issues like Leaky Gut. A deficiency in B-Complex Vitamins can lead to Leaky Gut as well as a Leaky Blood/Brain Barrier. A leaky BBB will allow pathogens and foreign proteins into the Brain, where they may cause inflammation, leading to Dysautonomia, Brain Fog, Loss of Memory, Headache, Depression & Anxiety, Chronic Fatigue, and other neurological symptoms. A B Vitamin deficiency will also make you feel more Stressed, and the primary objective is to Reduce Stress. Deep Sleep is the ONLY Time the waste products of inflammation and normal metabolism are removed from the Brain, so reduction of Chronic Stress to allow a Good Night’s Sleep is important for treatment. Typically, a Change in Attitude is required to reduce Chronic Stress and disrupt the endless repetition of negative thoughts. LifeWithKyle discusses how he uses Meditation to Calm his Nervous System and diminish Long COVID symptoms during a relapse. He offers Guided Meditations that are designed to make one feel SAFE, reducing Stress and avoiding the “Fight or Flight” Immune response. Fasting is a good Lifestyle Change to help restore integrity to the Gut and Blood/Brain Barrier as well as repair a dysfunctional Immune System. It gives the intestines a rest from Digestion, allowing energy to be focused on Repair. Fasting is a Stress on the Body, and like Exercise, should be approached gradually, probably AFTER you’ve had success with Meditation and Breathwork. However, one should realize EVERYONE FASTS WHEN THEY SLEEP. The key is to extend the benefits of Fasting into your Waking Hours. You should start with Time-Restricted Eating, gradually reducing the time of your Daily Feeding Window until you are comfortable eating within an 8 hour or less Feeding Window. From there, you can attempt a 24 hour or Multi-Day Fast. Don’t be discouraged if you end a Fast early. You can try again on another Day. Fasting will be easier if you follow a Healthy Low Carb, Whole Food Ketogenic Diet. Dr. Eric Berg can show you how to begin. Eliminating Grains and consuming Nutritional Yeast, a great source of B-Complex Vitamins, along with other B Vitamin-rich foods and supplementing Vitamin B1, will help to restore Intestinal and Blood/Brain Barrier integrity.
I believe you are absolutely right, because in my case I don't know of any infection I had, but I had a lot of stress, followed up by a severe Vit D deficiency, then intestine candida overgrowth, accompanied by yearly hayfever allergies in spring that had always stressed me. 2 years after onset of ME/CFS I got breast cancer on top. I did a check with my cell storage of minerals etc and I was defficient in at least half of them! Might have been that the candida was there longer, blocked minerals to being taken in, quite probably also casued Leaky gut because my brain was a bit struggling to, making frequent mistakes at work, forgetting stuff, focus was hard and I was often overwhelmed by stuff I hadn't been before. I then worsened my case by trying to activate myself. After all sport is said to be good for cancer patients and depression and I was after surgery which went well, but had declined chemo at that point as I feared I had not enough energy to go through it. So I downloaded an app and went jogging in my park, it went well for 3 weeks as I believe my adrenaline was activated pushing me until I crashed big and never fully went back to that baseline. Real life didn't stop to stress me, kids, a big household to take care of alone, little money and social security services trying to get me back into work (cancer was away at that point and for ME/CFS there was nothing in black on white, no biomarkers, noone knew the illness. My doctor trusted me and basically told me to do pacing, without really knowing much about ME/CFS, it was more of a gut feeling from her. She also didn't try to psychopathologize it and believed me when I said it doesn't feel like depression. Cancer came back after 2 years, but I detected it early, yet another surgery and I started to take antihormones bc of my breast cancer and was pushed right into menopause, which caused new stress. Difficulties with my son, financial stress, loosing friends bc I didn't call etc. I was never at a point where I was just taken care of and let my body just try to heal, it was always stress from one side or the other. I believe I could be better or at least at a better baseline if the constant little PEM crashes didn't happen regularly. Some poeple claim that my fatigue came/comes from cancer. I don't believe that. Cancer fatigue doesn't cause PEM crashes. And after surgery and cancer removed, I felt a bit better, but still had my limits and PEM.
Recent research seems to show that EBV infection is likely causative for multiple sclerosis. EBV is at least mentioned in relation to ME/CFS. I wonder if ME/CFS (and Long C*VID) represent a biological process that can continue on the MS in some people. (Doctors have wondered for 20 years if I have MS but it has never progressed.) In my western U.S. geographical area we have had several terrible outbreaks of what our small town doctors called "unknown" "really tough" viral illnesses. When testing was done, results were negative for influenza. A basic pattern was that the illness began with mild upper respiratory signs. In about 48 hours the GI tract was attacked, especially intestines. Once the GI symptoms set in, neurological symptoms began. Those who got neurological symptoms were sick a long time or never fully recovered. I had one of these monster diseases in 1994-95 and never fully recovered. (Interestingly, when my friends and I got C*VID early in 2020, we were not severely ill. C*VID was nowhere near as bad as were the mystery viruses.) This video mentions gastrointestinal dysfunction preceding ME/CFS. For what it's worth, my earliest memories of being alive, maybe age 3, were that my ears made a lot of noise (tinnitus) and I felt like I would vomit. I have not had one moment in my life when I was not nauseous. I was shocked when my husband told me most people do not feel their stomachs unless they are hungry, full or ill. I cannot imagine not feeling my stomach! I have lived a long time and medical science needed to advance for me to even have a chance of diagnosis. For decades, doctors ridiculed me as mental and told me I would have to learn to live with a sick stomach. I have done my best. A diagnosis when I was a teen was that I had overactive intestines. (At that time I had normal and regular bowel movements, etc. but had chronic nausea.) Another diagnosis as a young adult was, overactive stomach and that doctor told me I was causing my own problems and needed to think differently! In 2006, lymphacytic colitis was diagnosed via colonoscopy. There is no treatment for that and I do not have severe symptoms though chronic nausea persists.
Excellent presentation! Thanks to Dr Jason and Dr Katz for their persistence. Thanks to this group for posting the presentation.
Great presentation, thanks for uploading 👍
Where do I find the assessment for PEM through Dupaul?
Phenomenal presentation and phenomenal research. Thanks so much for sharing 👏🏻👏🏻👏🏻
Thank you so much for this. I was in tears hearing so much validation and understanding. I can't even begin to imagine what it would be like to have a physician who understood this.
Dr Jason never looked into Chronic Fatigue Syndrome or he would know this syndrome was coined due to a fatal exception to the EBV hypothesis. An outbreak type disease that couldn't possibly be from EBV.
I don't understand your reply. Cog fog...please could you explain for me
@@janerigg9358 Sure. The "CFS" syndrome had to be coined because the Lake Tahoe outbreak which was suspected to be an outbreak of "chronic mono" turned out not to be from EBV at all. Dr Jason thinks CFS is from mono. He's got it all wrong.
@@erikjohnson4275 Thank you
Good presentation. One big caveat about sleep hygiene though: for some patients this advice may be counterproductive. Daytime napping may be very necessary. In an effort to eliminate that, the patient may push beyond their limits and adrenaline takes over, thus exacerbating the sleep problem. Taking the rest and sleep you need is more important. Getting dressed into day clothes can be too taxing. Etc.
Thank you !
Thank you.
7
Thank you . Jason & Dr Bobak. This contains critical info re: community psych research and its role in advocating for social change that I wish had been available to me when I first went into the mental health field. The Q&A section features extremely insightful questions from the students attending this lecture. Kudos to all! Mkaye W
This is a phenomenal job. Many thanks to John and Lenny! I hope we will see more sessions of this kind, from basics to advanced models, in R Siena. Thank you!
Thank you so much, Dr. Leonard Jason and Ted. This session is so wonderful. I am a Ph.D. student at UB Buffalo. I would love to learn more from you. Could you please organize a course on the basics and advanced modeling using R Siena? We will be very thankful to you.
Great video, thanks for sharing. I’ve never heard the theory that ME brains are close to going into low-level seizures. That’s really interesting. I’ve been explaining to people for years that I have “seizures” as a way to explain why I can’t just speak at-will. What I feel seems like a seizure-like reaction to minor stimulus.
Hello, your excellency, I am Muhamad Adam from Sudan, Darfur region, my parents are from a village called (korma) and because of 2003 war they had to leave the village after it got burned by a group of armed gun-people, it happened they made it to Alfashir safely in Alnifasha, camp as a displaced people, our income is farming not far away from the city,I am student at Alfashir University Arts Englund department, Semester 4, it happened to postpone my education because our source of economic is threatened by the same group of armed people, and we don't have guns to fight back whereas the government couldn't do nothing to stop them! I couldn't continue my education, I made it to Libya throughout difficult smuggling abuse and I am in Tripoli without legal papers, under any moment I would be in jail!; I went to UNHCR here, first time in December they told me to come back in 20th of February I went again, they gave me another appointment after three month which is very disappointing for someone in my situation, firstly I need a UNHCR documents that give me right to work or if I got caught under any moment they would know that am a refugee, that's why I have strong feeling that you would do something for a case like mine, finally thank you so much if you read my case, am looking forward to hearing from you. Faithfully Muhamad.
It will soon be 65 years since Dr Ramsay recognised ME. When is the medical world going to overcome its prejudice against post viral diseases and find a cure?
Dr. Jason's talk begins at minute 5:24.
How the CDC fooled gullible doctors. kzread.info/dash/bejne/hHiamMuuYdHPps4.html
Website for U.S. Action Working Group is usawg.wordpress.com (typo on the slide)
Excellent discussion. Thank you - Lenny's the best!
So validating!! Then the interviewers ADD & Dyslexia, was on point for personal identification! Also having 2 “before my illness”, same illness connection - I have witnessed the history! Thank you 💕
I’ve had the same thought you articulated, Dr. Jason. It’s not at all surprising that some ME/CFS patients suffer from comorbid depression. It’s amazing that so many of us don’t!
Thank you Dr. Jason. (Thanks to both of you). This was insightful. I appreciate your 30 years of dedication and experience working with ME. The information was refreshing and validating coming from an expert. Aside, thousands and thousands of women are developing a multitude of symptoms after getting breast implants. It’s a fight to get this medically recognized although there is old scientific research that supports correlation potential. (ASIA, siliconosis, -immune disruption etc). Women are facing blame and claims of hysteria and are being gaslight. The FDA is aware, but change is slow. Advocates(myself and others) must push on in these arenas. As you said, “new frontier,” you are on-point!
Lenny gets it!
Thank you x
Black molds are one of the underestimated leading causes of chronic fatigue syndrome. Mast cells activation syndrome is similar to CFS . Even though my disease onset started following mandate vaccines
Dr Jason has been told about toxic mold for 20 years. He never responds.
I have fybromyagia over 30yrs and always put down my fatigue to that. What is the difference. I have always said I only have so ,uch energy and once it's gone it takes me days to recover. I love exercise but after a small amount I am in recovery mode again. I am now 62 and doubt I will ever be well again.
The CDC did not rename ME. Dr Carlos Lopez, who convened the Holmes committee, explained that the new syndrome was to FIND OUT IF THE LAKE TAHOE OUTBREAK WAS THE SAME AS THE ROYAL FREE DISEASE, ME. There never was a renaming. Did not happen. And Gary Holmes said that fatigue was the outward sign of "a possibly unique medical entity" He DID NOT SAY CFS IS JUST FATIGUE, and the directive was to LOOK FURTHER. The whole medical profession screwed up by freaking out and never bothering to look at how this whole thing came about.
I agree with you. I duno why these people spread this, who dont read or know the history. Didnt this guy fall ill due to EBV? If so thats not M.E.. Shepherd fell ill after Zoster. Neither is M.E.. Both are misdiagnosed CFS illnesses. M.E. also is talking about severe end of spectrum related to Enteroviruses and a real genuine acute onset Encephalomyelitis; hence the reason for name. Ones who have actually had Encephalomyelitis. Its a neuromuscular 'motor neuron' illness and nonparalytic poliomyelitis in relationship to enteroviruses. Its not due to a lack of energy. CFS illnesses are lack of energy. The motor neurons attached to muscles have been damaged and destroyed. People who dont have this. Dont have M.E. The lack of energy people aint M.E. patients. End of story. Dont have same injuries. Encephalomyelitis means Encephalomyelitis. If the person hasnt had an Encephalomyelitis. They dont have M.E. Alot of the people who talk about M.E. dont even have it and are totally misdiagnosed.
Living in the Chicago area, one of the most frustrating things for me is that DePaul is the only Chicago University that does any research on this. The primary research is done on the coasts or in Utah. This leaves thousands without help, without diagnosis. I thank God every day for Dr. Jason and DePaul. But we have Northwestern, University of Chicago, Rush and Loyola mostly doing nothing. I want to participate in studies, but these noble institutions could not be bothered to even stay current on the research. The AMA does so little. It should be a nationwide push to educate the medical professionals.
This is a beautiful initiative. Thank you guys, you help restore hope in humanity.
Can we use siena on weighted networks.
No one has ever come back to Incline Village to learn the real story of how and why the CFS syndrome was coined. These "researchers" are no better than the CDC/NIH
Ok
46:30 so true
Thanks