I know this is personal for you - but many many thanks for your attention, energy and commitment to researching this illness! You are going to change millions of lives for the better with your efforts. We are so lucky to have you on our side.
I'm very ill from cfs. Every day gets worse and I pray for GOD to please take my life. All this research has offered nothing in treatment. Thank you for trying.
@@richk322 hello friend, please hang on. I know the struggle. I've been mostly severe for the last year, some weeks even very severe. Yes that was unbeareble. But now i am moderete to severe for the last 3 months and thats state i can wait in. Hang on friend! One day you will thank yourself and be proud. Love
@@richk322 if you can afford it, it is very expensive, you could try Ampligen. It has shown improvement in lots of severe ME patients I heard. have you also tried aripiprazole (abilify)? Some people improved on this. I took omega 3 fatty acids and B12.
Good to see scientists trying to prove their hypothesis wrong, but keep finding in reality they can’t, which adds more weight to the possibility that the original hypothesis has merit. Trying to prove a hypothesis wrong is good proper science, as it rules out coincidence. And shows decent evidence to others (regulators or people still claiming this horrible disease is a mental illness) who later may try to debunk these findings, will find they can’t. Thank you OMF for being so thorough!
Dear Dr Davis, You really cannot imagine how much your work means to us. We've been suffering & invalidated by the very docs who should be attempting to heal us and try to give us some QOL (or at least believe us) . The invalidation has been nearly as hard to bear as the disease Your work gives us validation NOW, and Great hope for the future. Blessings on you and your precious family this Thanksgiving. J.J.
Reading these comments and now yours here made me feel so much less alone right now as I could have written the exact same words in the same way. So many of us going through the same thing (similar at least), feeling the same feelings..
My son is literally dying with severe ME/CFS , I can’t tell you how much this research means to him and our family As always my thoughts are with you Ron and your wife and Whitney ❤️
As a person who has ME/CFS, I am grateful for attention and research into this. I am heartbroken for us all who suffer, lives disappearing and for our families. Thank you for your effort.
As I suspect I have this diagnosis and are fighting tooth and nail to get help while maintaining a personal and professional life, updates like this gives me the strength to continue. Thank you for that from the bottom of my heart.
Thank you, thank you, thank you all so very much for all that you are doing to try to improve our lives! I've had ME/CFS for almost 3 decades, severe for the past 7 years. My husband, carer, and I have had Long Covid since March of 2020, we got our vaccines this past Spring, and caught breakthrough COVID on July 29, 2021 from me spending 20 hours in the ER (for my ME/CFS and POTS causing me to pass out repeatedly) that was packed with Covid positive patients. After a couple of useless days admitted to the hospital, I went home.....only for the 2 of us to start all over with COVID again. It's beyond frustrating to not be able to get care for ME/CFS and Long Covid simply because there isn't enough funding given to all of you wonderful researchers!
Thank you for taking the time to update us. This sounds promising, I'm so grateful to all you clever people working so hard on this. I'm severe, so is my partner, we are barely living. Getting even just 10% of our life back would be a dream come true.
Happy to help. I want to figure this out as bad as anyone at Stanford does. I am lucky enough to be an ME/CFS sufferer living in the first world, I will keep donating until there's a cure.
Hi Dr. Davis - I'm a seasoned software engineer with a fair amount of embedded and windows experience who has a partner with debilitating ME/CFS. I would gladly donate dedicated time to your work if you need engineering support for your antiquated windows software (assuming you have the source code in tact - I can probably help). Let me know here and I can send you my linked-in profile to consider.
@@eagix You should be able to contact Ron through the Open Medicine Foundation - their email should be on their website. Thank you for your generous offer of your expertise, it's very much appreciated. If Ron and Co don't need it currently, I'm sure there are some other ME/CFS groups and organisations that would.
Thank you so much for all your hard work and for keeping us updated. It means the world to us to have such dedicated scientists and brilliant minds working relentlessly to help find answers to this horrendous disease. Sending you all the gratitude, love, respect and good wishes from Ireland.
I couldn't imagine a reality where I can actually get my life back from this illness after all these years. if you can actually find a cure I would give up everything I own for it. Good luck
Thank you all SO MUCH for doing this research! I have suffered with ME/CFS for 20 years now, and it has taken the "prime of my life" away from me. If you can get us closer to a treatment or a cure, we will owe you our lives
Please don't stop. Thank you for all of your work. I'm a severe patient and stuck in a black hole with no specialists in my area, and my doctor doesn't have anymore answers. We need more work on this.
Thank you. So very much, from people all around the world. Your work is life changing and more than anything, it’s giving us hope. Thank you. I hope there is significant recognition in your future for all that you do!
I second that. Thank you, Dr. Davis, & thanks to all those who assist & support you. Thank you, Vinod Khosla, & thanks to all those who enable & support you.
If this metabolic trap hypothesis (where high tryptophan levels prevent ID01 from changing tryptophan into kynurenine) is correct, then wouldn't the cells of pwMECFS be high in tryptophan and low in kynurenine. Couldn't this become a biometric test?
recent Air Force officer and police officer…was in great health last year and then I had a few different happenings-tick bite (swollen lymph nodes), possible C19 infection, underwent a procedure involving anesthesia, had connective tissue trouble start, and even got a neck injury. I have an autoimmune condition now with ME/CFS, muscle atrophy, Craniocervical Instability, IIH, and so much more. Fighting for my life in the hospital now. They aren’t able to help me beyond Plasmapheresis and IVIG…hast helped yet-still worsening…hoping there’s a breakthrough soon 🙏
I am so sorry to hear this. Have you researched Jennifer Brea and Jeff Wood’s stories and road to recovery through fusion surgeries etc for their ME & CCI?? I assume you would have which lead to your diagnoses but just in case :) I have had ME/CFS since 18 & am now 35 and house bound but before that was incredibly fit and healthy. It is insanely frustrating to say the very least to have your old self still in your head but a failing body in reality. Hang onto that hope Anson, it might be a long road ahead but you are not alone
@@-brooke. thank you, my friend 🙏 I am trying to get to Mount Sinai now to see Dr. Bolognese and Dr. Ruhoy. Dr. Bolognese said I have dynamic basilar impression, CCI, and intracranial hypertension, with moderate stenosis. He is wanting to admit me but Covid has made admissions hard right now. I am having scary levels of head pressure and swelling over my left eye. But the hospital I’m in has become apathetic towards me because they don’t understand.
@@anson.meadows thats great to hear your in the US and have access to those Doctors. I hope you are able to go through with your treatment with them soon! Ugh, high levels of head pressure and the migraines accompanying them are absolutely horrendous. If only ppl could momentarily feel how you feel so they could have some understanding. Its terrible how little compassion is given for these diseases, especially from the medical field. As a commenter said under this video ''the invalidation has been nearly as hard to bear as the disease''. What a deep truth.
Hang in there...I was once severe...upgraded somewhat but that can change quickly...it's horrific nightmare.if people knew the devastation I think more donations would pour in
That's basically exactly my own story: I used to be an "elite soldier" (recon driver) and had a series of severe infections and traumatic injuries during a time period of about two years. Didn't recover fully after the infections, not regaining my former strength nor stamina. About ten years later I started to get increasingly handicapped, starting with extensive PEM and sweating. Now with severe ME/CFS rendering me partially house bound with migraines and severe spinal pain in addition as a result of a failed parachute opening and broken spine. My life is just junk but the pain I can live with. Morphine and Imigran gets me through the days. Fatigue and brain fog is the real killer here! Keep fighting! One day three will be a breakthrough! 💪💪
They’re all sleeping. It take a week of heavy handed research and this crap of a disease is history. But apparently there’s a huge financial profit behind this disease.
Very impressed by Dr. Davis' hypotheses and I am enthusiastic about the concept of the metabolic trap. But as a professor myself I think he explanations would REALLY benefit from some slides and many animations. Laypeople simply do not understand enzyme kinetics and metabolite feedback.
Thank you Dr.Davis. I really hope it will work and we can see medicine coming out soon. After 13 years of cfs/me it's more than enough for me and I want my life back. ❤
More power to all of the OMF researchers! Hoping we can get more funding and research on board this train as more validity crystallizes in the science. I’ve been talking about this research for years with little uptake anywhere but now, my own doctors and specialists’ interest is peaked after saying for so many years this is a very unique partnership at OMF with a commitment to overcoming obstacles. They’re interested in the FDA approved alternate use medication approach and the ingenuity in the data and research processes. Your work is so appreciated.
Dr. Davis thank you for all you are doing for us CFS patients. I have CFS and diagnosed and patient in Stanford. I also have MS and was on Rituxan for a few years. Had really bad MS attacks before going on Rituxan. Last year insurance didn’t approve Rituxan for my MS and I got worse. Currently experiencing a really bad CFS crash. Just started 0.1 ml Abilify for CFS but it doesn’t let me sleep. And will have to start Tysabri infusions for MS. can I take anything for sleep to help me continue Abilify ?
Lots of people recover, that's how I know this will be easy to reverse once they unlock the code of this. I bet once they do find the cause, it will have stared them all in the face
After 30 years of having this and doing my own research I am hoping before I die someone finds out the cause of this nitemare. I have a study published in 2000 medical journal. Started and facilitated a support group for this at local hospital for 23 years. I was diagnosed during the Incline Village breakout time about 1988. Problem money for this research has been lacking till recently. Most new people don’t even know about this time frame in the 80s. Hopefully for us and the Covid long haulers there will be help someday. This disease is a thief of life stealing years of days and nites that we will never get back.
I was told I have a defective tryptophan transporter gene. Is that the same thing? Am I understanding correctly that we should never take tryptophan supplements?
Thank you Professor for sharing the update, i cant claim i understand all you share with us im not academic or have a medical background, but i can follow what your saying and see possible connections to other areas of interest to me that may sound totally unrelated, Bee Keeping and Gourmet Mushroom growing, so please accept my apologies for this unrequested brain fart. Prof Paul Stamets has been doing research into colony collapse syndrome in honey bees and found a correlation with the lack of P-Coumaric acid and the p-450 pathway, humans also have this pathway and other common pathways i believe. Could p-Coumaric acid be of interest in the role of cfs/me. In Mushroom world im sure you know there have been some very promising discoveries made and papers published in recent years about the compounds in some edible mushrooms and the immunoregulatory possibilities , Cordyceps Militaris , Inonotus obliquus and Reishi (Ganoderma) to mention a few, i believe that cordyceps and possibly others have been fda approved for research use recently and thought id mention it in case its of interest in regard to you mentioning lack of fda approved medicine/compounds to try.
very good but it seems to be a jump to say that doing this manipulation to the yeast is equivalent to the chronic fatigue process in the human. whose to say that the metabolic trap would not be fatal for an organism ? or conversely, have barely any effect on its function ? or the trap can be automatically undone by other secondary mechanisms. If you could induce chronic fatigue in a mouse by creating the metabolic trap... that would be more convincing as to whether it really is the cause of the disease.
Cells are easier and cheaper to test on. If you rule out the cell, there is likely little need to test in animals and the research can move on to other hypotheses.
He did not say that the yeast model is equivalent to humans. He has put the human gene into the yeast. He also said that the next step is to test it in human cells. A mouse model is not that much different from a yeast model in spite of what you might think. Ron has actually done research on what models are best to use for complex issues like this.
I know exactly when I got CF/FM. I had two surgeries in on day & had it afterwards 1983? . It was a slow onset. I got by. Had a serious illness with mult. surgeries on pancreas, but no chg. 2003. 2019 I got the high dose flu shot with immed worsening. I had worked up to lifting wts and that day could not complete routine. Arthritis/FM worse, increased insulin need, sugar cravings, and need to be in bed & napping.
My memory of the explanation is that in healthy people all you need is IDO1, tryptophan levels generally never get high enough to inhibit the activity of the enzyme, so in most people IDO1 alone is able to regulate tryptophan levels on its own, it doesn’t matter if IDO2 is mutated in some way for most people. The general consensus in the scientific community is that IDO2 is essentially a redundant backup for IDO1, but further study has found that this isn’t quite correct - they’re activated and inactivated at different concentrations of tryptophan. If tryptophan levels get too high inside cells (for example due to severe infection) then IDO1 activity will be inhibited, in a cell with properly functioning IDO2, IDO2 becomes active at higher tryptophan concentrations and clears the excess tryptophan. If however you have a mutation in IDO2 which makes it less efficient, your cells may never be able to deal with all the tryptophan and are stuck in this disregulated state - your IDO1 gene will stay inhibited by the high tryptophan levels and your IDO2 gene is incapable of clearing the tryptophan due to mutation. This is why they say youre stuck in a metabolic trap, you can’t escape it without somehow disrupting the system. So to develop CFS you need to have an unhappy confluence of factors; an event that triggers unusually high tryptophan concentration inside cells and a mutated, poorly functioning IDO2 gene. If either of these aren’t present you would never be able to develop CFS (according to this theory).
Why does it target mostly women though? Do metabolites/metabolic/metabolism have a play? Does EDS (70% women) being connected to CCI have a play since it can affect the seratonin part of the brain?
I have diagnosed CFS but still able to work, just...constant pain everywhere, pressure headacke, constant tiredness, fatiguge, poor concentration.... i also have a damaged neak two damaged vertibra three prolappsed disks. CFS caused by varying or low pressure in spinal core or a reaction to central pain.
I was server at age 15 after mono no doctor at that time knew what was going on. I was checked into a children’s hospital were I was dx with dysautonomia, cfs one symptom I was having was metal taste sometimes. The doctor said that could be a symptom of Seizures so he ordered liquid dilantin i felt all crazy while it was going in I seemed to have reacted negatively to it. But when I woke the next day I was 80 percent better sound and smell sensitivity gone. Server orthastic intolerances gone. I actually walk to the car something I hadn’t been able to do for a year. It was like it reset something. I still had server fatigue but felt normal otherwise. Lasted up intel I was 28 and was given singulair for seasonal allergies to grass. Then boom with in 28 days I had it all back.
Low serum and muscle tryptophan levels, as well as elevated kynurenine levels, may be to blame for COVID-19's most common long-term symptoms, such as depression, sleep disturbances, fatigue, and muscle weakness-which are similar to the symptoms of tryptophan deficiency
If you look at cellular mineral levels you will consistently find a very low sodium to potassium ratio (Na/K ratio). Optimal level is 2.5, my initial level was .6. My level is now at 1.95 - getting close to normal and I am mostly recovered from ME/CFS at this point. Your son's level is probably only about .4 or so. Low Na/K levels compromise digestion. You cannot read this on a blood report as the levels are constantly buffered to stay in a normal zone. The best way is to use a Hair Tissue Mineral Analysis, however, most labs compromise the mineral results by the way they prep the sample - soluble minerals levels are altered by the cleaning solutions. Analytical Research Labs in Phoenix AZ is one of the only labs that provides an accurate test of the soluble minerals. When metabolism is slow, sodium and potassium cellular levels will fall and calcium and magnesium levels will rise (sometimes by 2x - 5x optimum levels). In some cases they will crash along with the Na & K levels - this is a true metabolic trap that takes a special program to recover to get out of, but it's doable and has been done many times already. I sure like to see yourself and other researchers spend more time studying the people that have either fully or partly recovered from me/cfs - we have a lot of both insight and data to offer in real world application, not in test tube. There are hundreds of interviews posted on youtube and other sites of people who have recovered by various means.
@@adrenalinejunkie3828 I had a quite severe case of me/cfs and it took many years to recover. The sodium & potassium levels were from a cellular biopsy - hair analysis is considered a cell biopsy. That is very different from a blood test that would be better for checking electrolytes. My blood test never showed any problems (as is the case with almost all me/cfs patients). Blood levels of minerals are highly regulated, while cellular levels can vary widely. I used a program developed by the late Dr. Paul Eck called Nutritional Balancing (also known as Mineral Balancing) to correct my metabolism back to normal. My first test showed approx. 75% loss of metabolic energy, not just in the Na & K levels, but most of my mineral levels were far from normal. It's unfortunate that me/cfs researchers do not take advantage of what is already known about me/cfs and how to correct poor metabolic performance - it looks to me like a lot of stumbling around in the dark reaching for improbable answers.
That’s very cool 😎 Alternatively, could you put people on a tryptophan restricted diet and fast to upregulate autophagy? So you get fresh enzyme and no overwhelming tryptophan.
Does anyone have any thoughts/information on how a person can have Fribromyalgia (possibly caused by low tryptophan/serotonin??) and ME (caused by too high tryptophan??) at the same time? Can tryptophan get stuck in the wrong place and not get converted to enough serotonin?
@@KidCity1985 sometimes i think in ME lies the key to all chronic illnesses, like MS, Rheuma, Lupus and more. Maybe thats why the lobby won't provide funding.
Vou dar uma resumida: basicamente o Dr Davis e sua equipe estão tentando testar a teoria da "armadilha metabólica" que foi teorizada por ele e outros médicos anos atrás. O processo inteiro é meio complexo, mas seu corpo entra em um ciclo onde fatores ambientais e genéticos fazem com que seu corpo não consiga sair desse ciclo, o que teoriza todos os sintomas da fadiga crônica. A atualização do doutor sobre esse tema é que eles ainda não conseguiram provar que essa teoria é inválida e estão procurando algumas drogas que possam intervir nesse processo metabólico e fazer com que ele volte ao normal. Segundo ele, com o equipamento que eles tem, é fácil encontrar tais medicações. Eles estão recebendo agora sangue de alguns doadores saudáveis para testar esses medicamentos, logo após isso, o teste será feito com sangue de pacientes para ai sim os testes poderem ser executados em vivo (com as pessoas tomando as respectivas medicações).
@Mauled By Traitors its all about the money....ME is expensive to diagnose and treat, hence why they stigmatized it to a psychological disease, for decades.
I know this is personal for you - but many many thanks for your attention, energy and commitment to researching this illness! You are going to change millions of lives for the better with your efforts. We are so lucky to have you on our side.
I'm very ill from cfs. Every day gets worse and I pray for GOD to please take my life. All this research has offered nothing in treatment. Thank you for trying.
@@richk322 hello friend, please hang on. I know the struggle. I've been mostly severe for the last year, some weeks even very severe. Yes that was unbeareble. But now i am moderete to severe for the last 3 months and thats state i can wait in.
Hang on friend! One day you will thank yourself and be proud. Love
@@richk322 if you can afford it, it is very expensive, you could try Ampligen. It has shown improvement in lots of severe ME patients I heard. have you also tried aripiprazole (abilify)? Some people improved on this. I took omega 3 fatty acids and B12.
Good to see scientists trying to prove their hypothesis wrong, but keep finding in reality they can’t, which adds more weight to the possibility that the original hypothesis has merit.
Trying to prove a hypothesis wrong is good proper science, as it rules out coincidence. And shows decent evidence to others (regulators or people still claiming this horrible disease is a mental illness) who later may try to debunk these findings, will find they can’t.
Thank you OMF for being so thorough!
Dear Dr Davis,
You really cannot imagine how much your work means to us. We've been suffering & invalidated by the very docs who should be attempting to heal us
and try to give us some QOL (or at least believe us) .
The invalidation has been nearly as hard to bear as the disease Your work gives us validation NOW, and Great hope for the future.
Blessings on you and your precious family this Thanksgiving.
J.J.
Reading these comments and now yours here made me feel so much less alone right now as I could have written the exact same words in the same way. So many of us going through the same thing (similar at least), feeling the same feelings..
My son is literally dying with severe ME/CFS , I can’t tell you how much this research means to him and our family
As always my thoughts are with you Ron and your wife and Whitney ❤️
See if they've checked his acylcarnitine levels. It's a simple blood test.
@@tearydawn what can you do with the result?
Love the videos. We veterans with CFS hang on every breakthrough. Please always keep up updated.
I can help you and my service is free to veterans.
As a person who has ME/CFS, I am grateful for attention and research into this. I am heartbroken for us all who suffer, lives disappearing and for our families. Thank you for your effort.
As I suspect I have this diagnosis and are fighting tooth and nail to get help while maintaining a personal and professional life, updates like this gives me the strength to continue. Thank you for that from the bottom of my heart.
Words can't describe how grateful I am for your tremendous efforts!
Ron, you're a legend. Keep it up.
Thank you, thank you, thank you all so very much for all that you are doing to try to improve our lives! I've had ME/CFS for almost 3 decades, severe for the past 7 years. My husband, carer, and I have had Long Covid since March of 2020, we got our vaccines this past Spring, and caught breakthrough COVID on July 29, 2021 from me spending 20 hours in the ER (for my ME/CFS and POTS causing me to pass out repeatedly) that was packed with Covid positive patients. After a couple of useless days admitted to the hospital, I went home.....only for the 2 of us to start all over with COVID again. It's beyond frustrating to not be able to get care for ME/CFS and Long Covid simply because there isn't enough funding given to all of you wonderful researchers!
Thank you for taking the time to update us. This sounds promising, I'm so grateful to all you clever people working so hard on this. I'm severe, so is my partner, we are barely living. Getting even just 10% of our life back would be a dream come true.
You have found the cause , and you will find the cure ! Thank you Ronald W. Davis !
I am one of the people that donated blood to you. Hope you figure it out soon.
Thank you!!
Happy to help. I want to figure this out as bad as anyone at Stanford does. I am lucky enough to be an ME/CFS sufferer living in the first world, I will keep donating until there's a cure.
Am I the only one coming back to this channel hoping for a new update
no
No.
No.
No.
No
Hi Dr. Davis - I'm a seasoned software engineer with a fair amount of embedded and windows experience who has a partner with debilitating ME/CFS. I would gladly donate dedicated time to your work if you need engineering support for your antiquated windows software (assuming you have the source code in tact - I can probably help). Let me know here and I can send you my linked-in profile to consider.
Thats a really nice offer! They don't seem to read their youtube comments much so you should maybe just email them your offer and Linkdin! Thank you
@@gabrielleg.1347 Thanks Gabriel, I did reach out on LinkedIn but didn't hear back. Not sure what other email to use if you have a recommendation?
@@eagix You should be able to contact Ron through the Open Medicine Foundation - their email should be on their website.
Thank you for your generous offer of your expertise, it's very much appreciated. If Ron and Co don't need it currently, I'm sure there are some other ME/CFS groups and organisations that would.
Thank you PaperCup - that's a great idea!
@@eagix Thank you for offering to help with programming. Did you hear back from Dr Davis or his team?
Thank you so much for all your hard work and for keeping us updated. It means the world to us to have such dedicated scientists and brilliant minds working relentlessly to help find answers to this horrendous disease. Sending you all the gratitude, love, respect and good wishes from Ireland.
Thanks so much for the update, and for the tireless work from all of you. We appreciate you so much!
I couldn't imagine a reality where I can actually get my life back from this illness after all these years. if you can actually find a cure I would give up everything I own for it. Good luck
Same.it’s horrendous
Thank you all SO MUCH for doing this research! I have suffered with ME/CFS for 20 years now, and it has taken the "prime of my life" away from me. If you can get us closer to a treatment or a cure, we will owe you our lives
Please don't stop. Thank you for all of your work. I'm a severe patient and stuck in a black hole with no specialists in my area, and my doctor doesn't have anymore answers. We need more work on this.
Sterling & Steadfast work Ron & Team brilliant stuff thank you so much for all of your efforts & commitment 💙🙏🏼💙xx
Thank you for your dedication to solving this. Praying for you and your team.
Thank you. So very much, from people all around the world. Your work is life changing and more than anything, it’s giving us hope. Thank you. I hope there is significant recognition in your future for all that you do!
Agreed, and another thank you here, from Australia. :-)
So grateful to Dr Davis and Vinod Khosla who funded this research since our NIH wont
I second that. Thank you, Dr. Davis, & thanks to all those who assist & support you. Thank you, Vinod Khosla, & thanks to all those who enable & support you.
Iv been suffering with CFS/me with fibromyalgia and I'm ready to die
Thank you so much for this research! It is so desperately needed.
Thanks for the update doc !, never stop believing. You WILL find the key
If this metabolic trap hypothesis (where high tryptophan levels prevent ID01 from changing tryptophan into kynurenine) is correct, then wouldn't the cells of pwMECFS be high in tryptophan and low in kynurenine. Couldn't this become a biometric test?
Thank you Ron. You and your entire team are providing hope for so many of us, I cannot put my gratitude into words.
Ron you're an inspiration to me and many others.
We really need some treatment options by now....
recent Air Force officer and police officer…was in great health last year and then I had a few different happenings-tick bite (swollen lymph nodes), possible C19 infection, underwent a procedure involving anesthesia, had connective tissue trouble start, and even got a neck injury.
I have an autoimmune condition now with ME/CFS, muscle atrophy, Craniocervical Instability, IIH, and so much more.
Fighting for my life in the hospital now. They aren’t able to help me beyond Plasmapheresis and IVIG…hast helped yet-still worsening…hoping there’s a breakthrough soon 🙏
I am so sorry to hear this. Have you researched Jennifer Brea and Jeff Wood’s stories and road to recovery through fusion surgeries etc for their ME & CCI?? I assume you would have which lead to your diagnoses but just in case :) I have had ME/CFS since 18 & am now 35 and house bound but before that was incredibly fit and healthy. It is insanely frustrating to say the very least to have your old self still in your head but a failing body in reality. Hang onto that hope Anson, it might be a long road ahead but you are not alone
@@-brooke. thank you, my friend 🙏
I am trying to get to Mount Sinai now to see Dr. Bolognese and Dr. Ruhoy. Dr. Bolognese said I have dynamic basilar impression, CCI, and intracranial hypertension, with moderate stenosis. He is wanting to admit me but Covid has made admissions hard right now. I am having scary levels of head pressure and swelling over my left eye. But the hospital I’m in has become apathetic towards me because they don’t understand.
@@anson.meadows thats great to hear your in the US and have access to those Doctors. I hope you are able to go through with your treatment with them soon! Ugh, high levels of head pressure and the migraines accompanying them are absolutely horrendous. If only ppl could momentarily feel how you feel so they could have some understanding.
Its terrible how little compassion is given for these diseases, especially from the medical field. As a commenter said under this video ''the invalidation has been nearly as hard to bear as the disease''. What a deep truth.
Hang in there...I was once severe...upgraded somewhat but that can change quickly...it's horrific nightmare.if people knew the devastation I think more donations would pour in
That's basically exactly my own story: I used to be an "elite soldier" (recon driver) and had a series of severe infections and traumatic injuries during a time period of about two years. Didn't recover fully after the infections, not regaining my former strength nor stamina. About ten years later I started to get increasingly handicapped, starting with extensive PEM and sweating. Now with severe ME/CFS rendering me partially house bound with migraines and severe spinal pain in addition as a result of a failed parachute opening and broken spine. My life is just junk but the pain I can live with. Morphine and Imigran gets me through the days. Fatigue and brain fog is the real killer here!
Keep fighting! One day three will be a breakthrough!
💪💪
Is there any new updates?
They’re all sleeping. It take a week of heavy handed research and this crap of a disease is history. But apparently there’s a huge financial profit behind this disease.
Ron, you’re a treasure. 🙂
I am thankful for you Dr. 🦃
You working so hard for your son and for us means so much. Thank you for caring and not giving up.
Thank you Dr Davis - very exciting news.
Thank you, thank you, thank you and everyone involved for all their efforts. It is greatly appreciated.
Very impressed by Dr. Davis' hypotheses and I am enthusiastic about the concept of the metabolic trap. But as a professor myself I think he explanations would REALLY benefit from some slides and many animations. Laypeople simply do not understand enzyme kinetics and metabolite feedback.
Wonderful news! Grateful to all involved!
HURRY UP!!
Thank you Dr.Davis. I really hope it will work and we can see medicine coming out soon. After 13 years of cfs/me it's more than enough for me and I want my life back. ❤
More power to all of the OMF researchers!
Hoping we can get more funding and research on board this train as more validity crystallizes in the science.
I’ve been talking about this research for years with little uptake anywhere but now, my own doctors and specialists’ interest is peaked after saying for so many years this is a very unique partnership at OMF with a commitment to overcoming obstacles. They’re interested in the FDA approved alternate use medication approach and the ingenuity in the data and research processes.
Your work is so appreciated.
Thanks for the update! As someone who works with mast clients, that also have trouble in this pathway, I've been following this hypothesis.
Dr. Davis thank you for all you are doing for us CFS patients. I have CFS and diagnosed and patient in Stanford. I also have MS and was on Rituxan for a few years. Had really bad MS attacks before going on Rituxan. Last year insurance didn’t approve Rituxan for my MS and I got worse. Currently experiencing a really bad CFS crash. Just started 0.1 ml Abilify for CFS but it doesn’t let me sleep. And will have to start Tysabri infusions for MS. can I take anything for sleep to help me continue Abilify ?
Thank you for this update, Dr Davis!
Big thank you for all that you do
Thank you so much for your work! Please keep up updated. So many lives (& hope) depend on it!
Thank you for the update. Wishing you and your family all the best
Thank you & bless you Ron Davis & all at OMF.
Thank you thank you thank you - your efforts mean so much to so so many of us
What type of compounds are showing success? What are the binding affinities?
When are you gonna get something done,that actually helps people with M.E!!
Does this mean it can be passed down? My grandmother, mother, aunt, cousin, and I all have CFS. I'm the most severe.
The genes can be passed down. One severe infection - Covid, or more common EBV -, and the system crashes.
Lots of people recover, that's how I know this will be easy to reverse once they unlock the code of this. I bet once they do find the cause, it will have stared them all in the face
After 30 years of having this and doing my own research I am hoping before I die someone finds out the cause of this nitemare. I have a study published in 2000 medical journal. Started and facilitated a support group for this at local hospital for 23 years. I was diagnosed during the Incline Village breakout time about 1988. Problem money for this research has been lacking till recently. Most new people don’t even know about this time frame in the 80s. Hopefully for us and the Covid long haulers there will be help someday. This disease is a thief of life stealing years of days and nites that we will never get back.
Thank you for your work.
Any updates? It’s been 6 months….
I was told I have a defective tryptophan transporter gene. Is that the same thing? Am I understanding correctly that we should never take tryptophan supplements?
Great update, thanks for sharing 👍🏻
Thank you so much for this update!
How do we go about helping with blood draws? I will be seeing Dr. B in April and would like to help if possible. Thank you for your work!
SAME!!
Hi, can you recommend a doctor in Houston or Texas area that treat CFS/ME? Thank you for your research.
Thank you Professor for sharing the update, i cant claim i understand all you share with us im not academic or have a medical background, but i can follow what your saying and see possible connections to other areas of interest to me that may sound totally unrelated, Bee Keeping and Gourmet Mushroom growing, so please accept my apologies for this unrequested brain fart. Prof Paul Stamets has been doing research into colony collapse syndrome in honey bees and found a correlation with the lack of P-Coumaric acid and the p-450 pathway, humans also have this pathway and other common pathways i believe. Could p-Coumaric acid be of interest in the role of cfs/me. In Mushroom world im sure you know there have been some very promising discoveries made and papers published in recent years about the compounds in some edible mushrooms and the immunoregulatory possibilities , Cordyceps Militaris , Inonotus obliquus and Reishi (Ganoderma) to mention a few, i believe that cordyceps and possibly others have been fda approved for research use recently and thought id mention it in case its of interest in regard to you mentioning lack of fda approved medicine/compounds to try.
Thank you so much for this, Ron! It's wonderful to get a little extra hope for Thanksgiving time ❤ How can we find out about giving blood to help?
I think you have to donate in person, but great question. I wish I could donate but I'm in another state.
Thank you so much! Is any herb known for it already that could potentially work?
Suramin should work.
Thank you you give me hope
so now all we need to do is turn ourselves into yeast ;) keep up the good work!!
very good but it seems to be a jump to say that doing this manipulation to the yeast is equivalent to the chronic fatigue process in the human. whose to say that the metabolic trap would not be fatal for an organism ? or conversely, have barely any effect on its function ? or the trap can be automatically undone by other secondary mechanisms. If you could induce chronic fatigue in a mouse by creating the metabolic trap... that would be more convincing as to whether it really is the cause of the disease.
Cells are easier and cheaper to test on. If you rule out the cell, there is likely little need to test in animals and the research can move on to other hypotheses.
He did not say that the yeast model is equivalent to humans. He has put the human gene into the yeast. He also said that the next step is to test it in human cells. A mouse model is not that much different from a yeast model in spite of what you might think. Ron has actually done research on what models are best to use for complex issues like this.
@SKY yes
I know exactly when I got CF/FM. I had two surgeries in on day & had it afterwards 1983? . It was a slow onset. I got by. Had a serious illness with mult. surgeries on pancreas, but no chg. 2003. 2019 I got the high dose flu shot with immed worsening. I had worked up to lifting wts and that day could not complete routine. Arthritis/FM worse, increased insulin need, sugar cravings, and need to be in bed & napping.
Does anyone here know the best way to find a doctor for CFS? I need help
What does it mean for a gene to be essential vs not essential?
Why is the ID01 gene considered essential but ID02 gene is considered not essential?
My memory of the explanation is that in healthy people all you need is IDO1, tryptophan levels generally never get high enough to inhibit the activity of the enzyme, so in most people IDO1 alone is able to regulate tryptophan levels on its own, it doesn’t matter if IDO2 is mutated in some way for most people. The general consensus in the scientific community is that IDO2 is essentially a redundant backup for IDO1, but further study has found that this isn’t quite correct - they’re activated and inactivated at different concentrations of tryptophan.
If tryptophan levels get too high inside cells (for example due to severe infection) then IDO1 activity will be inhibited, in a cell with properly functioning IDO2, IDO2 becomes active at higher tryptophan concentrations and clears the excess tryptophan. If however you have a mutation in IDO2 which makes it less efficient, your cells may never be able to deal with all the tryptophan and are stuck in this disregulated state - your IDO1 gene will stay inhibited by the high tryptophan levels and your IDO2 gene is incapable of clearing the tryptophan due to mutation.
This is why they say youre stuck in a metabolic trap, you can’t escape it without somehow disrupting the system.
So to develop CFS you need to have an unhappy confluence of factors; an event that triggers unusually high tryptophan concentration inside cells and a mutated, poorly functioning IDO2 gene. If either of these aren’t present you would never be able to develop CFS (according to this theory).
Thank you, thank you... and Happy Thanksgiving ❤️🙏
Why does it target mostly women though? Do metabolites/metabolic/metabolism have a play? Does EDS (70% women) being connected to CCI have a play since it can affect the seratonin part of the brain?
I have diagnosed CFS but still able to work, just...constant pain everywhere, pressure headacke, constant tiredness, fatiguge, poor concentration.... i also have a damaged neak two damaged vertibra three prolappsed disks. CFS caused by varying or low pressure in spinal core or a reaction to central pain.
I was server at age 15 after mono no doctor at that time knew what was going on. I was checked into a children’s hospital were I was dx with dysautonomia, cfs one symptom I was having was metal taste sometimes. The doctor said that could be a symptom of Seizures so he ordered liquid dilantin i felt all crazy while it was going in I seemed to have reacted negatively to it. But when I woke the next day I was 80 percent better sound and smell sensitivity gone. Server orthastic intolerances gone. I actually walk to the car something I hadn’t been able to do for a year. It was like it reset something. I still had server fatigue but felt normal otherwise. Lasted up intel I was 28 and was given singulair for seasonal allergies to grass. Then boom with in 28 days I had it all back.
@@kimbuck-2 no
@@kimbuck-2 bed bound. Ever since I took singulair for seasonal allergies it triggered it over to server.
It's such a bizzre illness..my trigger was a chemical which contained benzene and toluene
@@roonbooks1418 yeah, its incredibly complex and follows no pattern except the triggers.
Low serum and muscle tryptophan levels, as well as elevated kynurenine levels, may be to blame for COVID-19's most common long-term symptoms, such as depression, sleep disturbances, fatigue, and muscle weakness-which are similar to the symptoms of tryptophan deficiency
Thank you from Argentina
If you look at cellular mineral levels you will consistently find a very low sodium to potassium ratio (Na/K ratio). Optimal level is 2.5, my initial level was .6. My level is now at 1.95 - getting close to normal and I am mostly recovered from ME/CFS at this point. Your son's level is probably only about .4 or so. Low Na/K levels compromise digestion. You cannot read this on a blood report as the levels are constantly buffered to stay in a normal zone. The best way is to use a Hair Tissue Mineral Analysis, however, most labs compromise the mineral results by the way they prep the sample - soluble minerals levels are altered by the cleaning solutions. Analytical Research Labs in Phoenix AZ is one of the only labs that provides an accurate test of the soluble minerals. When metabolism is slow, sodium and potassium cellular levels will fall and calcium and magnesium levels will rise (sometimes by 2x - 5x optimum levels). In some cases they will crash along with the Na & K levels - this is a true metabolic trap that takes a special program to recover to get out of, but it's doable and has been done many times already. I sure like to see yourself and other researchers spend more time studying the people that have either fully or partly recovered from me/cfs - we have a lot of both insight and data to offer in real world application, not in test tube. There are hundreds of interviews posted on youtube and other sites of people who have recovered by various means.
@@adrenalinejunkie3828 I had a quite severe case of me/cfs and it took many years to recover. The sodium & potassium levels were from a cellular biopsy - hair analysis is considered a cell biopsy. That is very different from a blood test that would be better for checking electrolytes. My blood test never showed any problems (as is the case with almost all me/cfs patients). Blood levels of minerals are highly regulated, while cellular levels can vary widely. I used a program developed by the late Dr. Paul Eck called Nutritional Balancing (also known as Mineral Balancing) to correct my metabolism back to normal. My first test showed approx. 75% loss of metabolic energy, not just in the Na & K levels, but most of my mineral levels were far from normal. It's unfortunate that me/cfs researchers do not take advantage of what is already known about me/cfs and how to correct poor metabolic performance - it looks to me like a lot of stumbling around in the dark reaching for improbable answers.
Please can I ask you some questions regarding this Alan E x
@Alan E
@@selinabrookes8045 Sure. My email is on my youtube channel page/about section if you would like to contact me directly. Alan.
@@alane9630 if you can contact me I’d really appreciate it:)
How can I make a donation directly to your research center and not to Stanford?
Donate directly to the Open Medicine Foundation here:
www.omf.ngo/
I see the Kynurenine pathway is implicated on normal blood clots, wonder if microclotting?
That’s very cool 😎 Alternatively, could you put people on a tryptophan restricted diet and fast to upregulate autophagy? So you get fresh enzyme and no overwhelming tryptophan.
Can patients from outside the US participate in the research?
Curious if Niacin affects this pathway.
I would make an excellent Guinea pig.
Yeah me too… I wouldn’t mind that at all 😂
Does the blood type at all play a factor here?
If this theory is correct then why does tryptophan medication not affect it in any way at all? Speaking about my own experience here
Many Thanks to you!!
Does anyone have any thoughts/information on how a person can have Fribromyalgia (possibly caused by low tryptophan/serotonin??) and ME (caused by too high tryptophan??) at the same time? Can tryptophan get stuck in the wrong place and not get converted to enough serotonin?
It's pretty common that ME/CFS is first misdiagnosed as fibromyalgia and later hangs on even if the patient is diagnosed with ME/CFS at a later stage.
So what about the Uppsala trial?
That is very interesting.
Thank you Ron
有人可以翻譯成中文嗎？ 這位博士大概講述了什麼 看評論區感覺很有希望的樣子
If the government cared at all, this man would have endless funding.
Government tries to impede all kind of funding for this disease.
@@barangoran4179 it's very suspicious.
@@KidCity1985 sometimes i think in ME lies the key to all chronic illnesses, like MS, Rheuma, Lupus and more. Maybe thats why the lobby won't provide funding.
Hell yeah 😄😄😄😄
Could watch a 5 year old video and get the same infos. Lots of talk and nothing gets done tbh.
Dead Right. Had it for 30 years plus and some Doctors will not even give sleeping pills, without which I have absolutely NO SLEEP WHATSOEVER.
I don't get it either. Something really has to happen now.
Alguém poderia traduzir o vídeo em português?
Vou dar uma resumida: basicamente o Dr Davis e sua equipe estão tentando testar a teoria da "armadilha metabólica" que foi teorizada por ele e outros médicos anos atrás. O processo inteiro é meio complexo, mas seu corpo entra em um ciclo onde fatores ambientais e genéticos fazem com que seu corpo não consiga sair desse ciclo, o que teoriza todos os sintomas da fadiga crônica. A atualização do doutor sobre esse tema é que eles ainda não conseguiram provar que essa teoria é inválida e estão procurando algumas drogas que possam intervir nesse processo metabólico e fazer com que ele volte ao normal. Segundo ele, com o equipamento que eles tem, é fácil encontrar tais medicações. Eles estão recebendo agora sangue de alguns doadores saudáveis para testar esses medicamentos, logo após isso, o teste será feito com sangue de pacientes para ai sim os testes poderem ser executados em vivo (com as pessoas tomando as respectivas medicações).
Can someone tell me if they gave up on the nanoneedle?l
@Mauled By Traitors its all about the money....ME is expensive to diagnose and treat, hence why they stigmatized it to a psychological disease, for decades.
Can anyone summarise how this translates to what CFS sufferers can get better treatment?
I'd like to know that too.
🤞🤞