An Update from Ron Davis and Janet Dafoe: The Neutrophil Study
ฝัง
- เผยแพร่เมื่อ 15 ต.ค. 2024
- REMEMBER! It’s the FINAL 2 DAYS to get your donation to OMF TRIPLED: bit.ly/3CdXYFH. HURRY before the math runs out on November 29, 2022!
Learn more about the neutrophil study: ron-davis-new-neutrophil-study
I've never seen Ron smile & chuckle so much. This must be revolutionary! You are both angels in disguise Janet & Ron ♥️
I particularly enjoyed that and Janet’s thoughtful chin stroking 😊
I am so emotional listening to this, as with all sufferers of ME, I am desperate to feel well after 35 plus years in my case.
I appreciate you and your work so much!!!
Thank you. Wishing you both well and obviously that includes Whitney also; his posts/words have often appeared as if by divine intervention at times when my reserves have all but given up, so much gratitude to him also. I know how much energy it must take for him. 😊🙏🏻🥰🙅♀️🙅♀️🙅♀️
A diagnostic marker is huge, hoping it works out. Thanks for maintaining the focus on Myalgic Encephalomyelitis
So lucky to have been able to have my caregiver husband quietly come by my darkened bedside for an hour T-gvg day - so sorry Whitney could not have been up for even this crumb of companionship!
I especially appreciate you two posting videos! Since I must have my computer screen black + volume low, severe ME only rarely allowing me to read OMF and other ME-related updates while laying flat in my bed, your videos, and your work on your son's and our behalf are are a huge gift - - - THANK YOU!
-Kandice Dickinson, age 62 || mostly bed/house-bound with severe ME since age 40 + mild ME and severe FMS+ since age 11 after a bout of glandular fever.:
Thank you for your hard work. Millions of ME sufferers hope for an answer, recognition, validation and cure. I wish there were more people like you.
You are the 2 most beautiful humans with the most amazing minds. Thank you so so much for giving hope to so many of us who so desperately need it. I will be forever grateful for all your efforts. xxx
I just want to tell you both thank you so very much for helping with this. I am so very tired all the time....no doctors want to help....I've been ill for 13 years....and rely on videos like yours - and cannot express to you enough how much I appreciate you all caring and doing research for the community of people like me.
I have severe ME and no one in this country,the US, cares, I've tried to get help so many times and no one cares or understands at all. I can barely move the last 3 months has been so bad I can't even hardly go to the bathroom I can't get to a shower, i can barely eat. So called medical professionals don't take me seriously at all and are just abusive so I'm stuck living in my car now and I can't even drive. I'm going to die soon because of people's lack of empathy. I'm only 34.
I am that example...diagnosed with A.S. in 2010. Major symptom for many years has been pain and fatique.
The fatique diagnosed as CF ( Tests also has shown the Epstien Barr) has worsened over the years. Doctors keep attributing my CFS to my A.S.
I am becoming more and more debilitated. I once was a active, and educated individual. I now am house bound and often bedridden.
I just came across your channel as I have William in FB.
Thank you for all you are doing. Thank you
Thank you so much for bringing us hope. ♡ I just donated to you for Whitneys 39th birthday. I have severe ME, ive been bedbound for over 2 years now. I have to believe that a cure will be found. Thats the only thing that keeps me going
What a great Christmas present you two are! You are both treasures, Dr. Davis for working so hard to get answers about this nasty disease and then passing them on to us patients (that helps us with hope) and Janet Dafoe, for working hard to make sure Dr. Davis's information is given in a way a lay person can understand.
What you do is invaluable in so many ways.
I want you to know I think of you both frequently, along with your dear, severely stricken with ME/CFS son, Whitney. You're all in my prayers (if you don't believe, know I'm sending you positive energy and love.)
Thank you so much for all the work you do and for these updates. Crying in bed watching this because it means so much to have people care, as well as provide hope. Thank you Ron and Janet and everyone at the OMF.
have severe ME and no one in this country,the US, cares, I've tried to get help so many times and no one cares or understands at all. I can barely move the last 3 months has been so bad I can't even hardly go to the bathroom I can't get to a shower, i can barely eat. So called medical professionals don't take me seriously at all and are just abusive so I'm stuck living in my car now and I can't even drive. I'm going to die soon because of people's lack of empathy. I'm only 34.
th-cam.com/video/9EiJ7z6uMVw/w-d-xo.htmlsi=g49eu1TSsijc62dA
This is so interesting and exciting. I wanted to thank you for the work you are doing, and for keeping us all updated. I know there are a lot of sufferers with ME/CFS and their carers too that really appreciate you Ron. Thanks to Janet too for keeping him on the easier-to-understand track in these videos! Love from the UK
It is nothing less than incredible what Ron and his staff have accomplished in the lab. And we are so grateful to have Janet translating all the complicated research data, so we all can understand. Once Ron has cured Whitney (and the rest of us) - and received the Nobel Price, you all in the family will need to go on a fantastic journey together to a lovely, beautiful and exotic place, so Whitney can make up for some of his lost years. You are all in my prayers.
🙏🙏🙏❤❤❤❤❤
PS My ME-brain is not working as it used to, so I didn't quite get how the neutrophil white blood cells are related to the itaconate shunt and why the itaconate shunt causes the mitochondria to dysfunction in producing sufficient ATP. So if Ron would elaborate on this in the next video, it would be much appreciated.
"That's Ron's excited face!" LOL!!! Loved hearing the update and can't wait to hear about what you learn. Thank you from the bottom of our hearts for all you are doing for those with ME/CFS. ❤❤❤
Thank you for your great work, and for keeping us updated! It gives us (ME/CFS patients) hope!
Love Ron's excited face. Thanks both xx
Thank you for recording and publishing thoughts, discoveries and theories. It provides a lot of hope for this suffering from ME/CFS and associated chronic illnesses.
This sounds promising. I hope it leads to a diagnostic tool and treatment. That would be so awesome. Donated!
Thanks so much for the update! I've often thought my immune system was 'sticky' - once triggered it keeps ramping up the fever or inflammation long after the trigger is killed/gone.
Hoping for a successful study, we need a break through. Keep up the good work.
I like the way Ron seems to be able to think like an engineer.... Not just knowledgeable but also intelligent... Able to use his knowledge to think of new ideas... Keep up the great work 👍
ThanQ for the hope❣️🙏
I was born with MECFS from being accidently poisoned as a foetus by highly toxic chemicals that crossed the placenta...my dad was a photographer & my mum helped...i'd love to ditch some symptoms (i got hEds too & had a massive aneurysm rupture in the main artery in my brain).
Getting polio from the sugar cube & being paralysed for 6 weeks as an infant probably didn't help much...
🙏💜xxx
Thank you Ron for giving us hope we desperately need. Please keep up the good work. And thank you Janet for your translations!
Of all the tests I’ve had over the years, my “abnormal” ones were high Total Complement and periodically high WBC (for seemingly no reason). I hope this is as promising as it sounds. Thank you, Ron & Janet.
Keep up the wonderful work you do - thank you. I love these posts - you make the progress and what you’re up to easy to understand. ❤
Thank you Ron and Janet for all the hard work you do for us! It's the dedicated work you do that gives me hope that one day there will be a lot more answers and treatment options for M.E. ❤ to Whitney.
Thank you so much for your work, and for explaining what lines of inquiry you're pursuing. I wish we had about 20 more of you!
Thank you Janet and Ron. Keep up the great work!
Thank you, Janet and Ron!!
This was a really simple explanation with the theory of the the innate immunity stuck on. Makes a lot of sense. I hope you’re close 🙏 Thank you all for all that you do. You give us hope and that’s priceless.
The "Inate immunity stuck on" hypothesis makes sense to me. I've not had so much as a common cold in 2 yrs since getting CFS, and I know other CFS/ME patients who have reported the same (i.e. they don't get "normal sick" anymore since getting CFS).
Yes, I have not been sick since getting CFS, 11 years ago.
I wonder if it means that the viruses and bacteria get in to the body, but cos the neutrophils are going slow, they don’t attack the invaders and pwMe are carrying around a nice cocktail of bacteria/viruses etc
I’ve heard some say this but certainly hasn’t been my experience. In fact I currently have a nasty cold virus going on 2 weeks now. Severe me/Cfs.
So strange! BI got sick with ME 5 years ago.. before I got ME, I used to get sick all the time! Ever since early childhood, I think Ive had a weak immune system. I used to get sore throats, colds, the flu ect. several times a year, but that all stopped since I got ME.. I have often wondered why this is, and Ive been trying myself to find the answer.
I've had a similar experience and also heard the same from others anecdotally. Another reason for the lack of illness though could possibly be down to isolation. Many people with MECFS spend a lot of time in bed on their own so that lack of contact with other humans may result in reduced viral/bacterial spread and reduce the chance of getting sick.
Thank you for all the hard work you and your team do and put into this disease, it much appreciated 🙏 watching thing's like this give us hope that someone out there cares and is working towards treatment etc 🤗
Awesome! Thank you so much! Also for keeping us updated 💙
Thank you so much for all your hard work both from a suffer🙏
Dang, missed triple Tuesday. I might have to wait for next round triple. Keep up the good work
🙏🏻 best of luck in your work.💪🏻
Does this have anything to do with VanElzakker's grant to study neutrophils in Long COVID and ME/CFS? Will you work together?
Thank you for being relentless in making us healthy, many of us live for your breakthrough.
I often think about how big a sacrifice it is that you don't get to enjoy your otium on your own terms - you can't travel or do as you please because of this mean disease. And yet you never complain but just keep on being so dedicated and hard working despite your age to solving this enigma. God bless you. 🙏❤🙏❤
A deficiency in vitamin B1 (thiamine) can lead to fatigue due to its essential role in energy metabolism. Thiamine is a coenzyme that helps convert carbohydrates into glucose, which is the primary fuel source for our body's energy production. Without sufficient thiamine, the body's ability to generate energy from food is impaired, leading to decreased energy levels and fatigue.
Additionally, thiamine deficiency can also affect the proper functioning of the nervous system, including the brain. This may result in neurological symptoms such as weakness, mental confusion, and difficulty concentrating, which can contribute to feelings of fatigue and tiredness.
I hope a cure comes one day that's what I'm waiting on. 6 years with this horrible illness. Keep up the good work. This is why I worry about getting the covid vaccine as I dont want it to cause my m.e to be even worse than now. As its serve now. Any serve patients had the vaccine with chemical sensitivity syndrome? I'm in the uk theres literally nothing for us and no support just judgement.
Thank you, donated. I appreciate the updates.
Thank you so much for the update. All the very best with this crucial work.
We need another update!!
Lovely to see Ron smiling 😊 Sounds like neutrophils behave like a supernova - they explode and mop up a lot of junk! It's great that you have someone new working specifically on this project. Cheers from Melbourne Australia (home of Chris Armstrong's OMF-affilitated research centre) ☺
I live near Sydney Australia,I've had it for close to 10 years. Do you know any good ME/CFS groups,to connect with?
Thank you for your efforts once again. Godspeed.
Thank you very much for the work you do and the update.
From the bottom of my heart Thank You ♥️
Thanks for the good work!
Y'all are awesome!
So impressive what you are doing!
💖 Thank you you two hero's 💖
This is amazing I have on and off had neutrophil issues in blood tests the neutrophils have been very low in a lot of my tests over the years and high WBC’s as well. I wonder what this means, severe ME sufferer for over 30 years.
Nutriphils
interacts with platelets and platelet activation and then RANTES / CCL5.
I am hoping I can understand why my sleep is so affected. I swear this only started after POTS and CFS. I may have sighted non 24 or sleep delay phase. My sleep keeps going forward. It's the one thing that really is making my progress stunted. If I could get better with that I would be honestly at peace with my level of functioning. If the CFS can be cured I'm hoping it will rid me off that. I know this is way off topic. Thank you so much for what you do it gives me hope more than anything.
If we could have directed our tax dollars from my husband's income (and every ME/CFS patient’s loved ones) to Open Medicine instead of it going to Dr. Fauci's NIH and the CDC- Open Medicine would have the answers by now!!
Keep up the good work!
God bless you for your commitment. There have been many days when knowing that you are working on the ME/CFS cure was all that kept me hopeful for a better life.
This innate immunity being activated and stuck on could explain why I got ME/CFS fairly soon after I got a flu shot. Important to note: I'm not an anti vaccine person! Its just that in 2013 I got a flu shot, a week later got a severe flu which was followed by secondary pneumonia. Treated with Z pack and lung issues went away, but all other symptoms of flu stay to this day. Thanks beyond thanks for the work you do.
Mil gracias desde Sur América!
Exciting possibilities! Thank you for staying focused on ME/CFS.
The last great disease to be conquered. Please keep us informed with your progress.
What is an update with a metabolic trap that you were working on earlier?
My daughter has severe ME like Whitney
Research update interviews by Janet Dafoe
Ron Davis : Itaconate pathway
th-cam.com/video/hxBIaA3YVXU/w-d-xo.html
Rob Phair: Itaconate Shunt
th-cam.com/video/RiVDNhg4l48/w-d-xo.html
Ron Davis : Manganese grant and study
th-cam.com/video/Cf8_xz0bVZc/w-d-xo.html
Ron Davis: Update on Tryptophan Metabolic Trap
th-cam.com/video/8drZ5eF7FI4/w-d-xo.html
Ron Davis: DNA/RNA Technology with Peidong Shen
th-cam.com/video/MwypF_KoRDM/w-d-xo.html
😂 since 2019 we have watched OMF UPDATES , and little has been discovered. I believe that avoiding crash is crucial to cope with the CFS till they find something that can help us in this disease
Absolutely. Plus you can't avoid crashes. There are always infections or stressors that cause crashes
Thank you so much !
When I have an actual virus my ME/CFS symptoms ease temporarily. Anyone else in the same boat? Always wondered why.
Immune system is distracted, thats why.
Thank you so much!!❤
The reduced neutrophil motility made me think of Nancy Klima's finding of reduced NK cell activity and Julia Newton et al's finding of increased neutrophil apoptosis. Since all of these are related to innate immunity is there a chance the same factor is causative of them all? Whether that is an infection, autoimmunity, or abnormally elevated signalling molecule?
makes me wonder if you turned off the innate immunsystem wouldn’t neutrophils and NK cells function even worse?
How has NO ONE made a full documentary on this amazing family!!?
Thank you for all the pioneering work you are doing to help all of us who are sick hope to get better soon. It's exciting that you're learning more. I especially like hearing one of your lab scientists got better by not letting herself crash...that's what I am trying too. Maybe we're getting that innate immunity to finally turn off. Wouldn't that be something.
Thank you ❤
More than half of my crashes, more so in the winter, are in fact colds and viruses. They just don't present like normal colds and coughs. Symptoms instead are crushing weakness and fatigue... Which lasts for weeks after the germ has gone too.
It makes sense why I'm so much better in the summer. Can't just be the heat and vitamin D! 😏
So, I think we still get sick, but not with the traditional snotty nose, coughs, etc.
I believe the immune system is too weak or too busy to pop out these normal cold symptoms.
Thank you OMF for all you do! ❤️
Beki x
So basically our immune system is in overdrive ? I heard LDN (low-dose naltrexone) helps regulate this -but haven’t tried it yet
My son with me/cfs has chronic low neutrophil count. This has me thinking 🤔 Dr just shrugs since he has no active illness they can find.
Just discovering Ron and his work. If I were rich, I would donate money to this cause without hesitation. I don't know if I have full blown ME, but I am exhibiting some pretty severe symptoms ever since I had a horrible norovirus infection last summer. I am in learning mode and just trying to manage my energy usage. Recently got a double vaccination for shingles and tetanus and that along with some intense physical exertion put me into the biggest crash yet. This has been an eye-opener. I simply can't do the stuff I used to do.
Regarding the idea of turning the innate immune system switch off as a treatment - I thought about this after watching the Itaconate shunt video - but wouldn't it be quite dangerous to turn off the innate immune system? I would guess that a medication might suppress the immune system enough to get the citric acid cycle going again normally and generating ATP. But then wouldn't this leave people with MECFS who are being treated with a non functioning immune system? Or would any medication have to be able to just reset the switch so it's still able to turn on again if there is a genuine viral/bacterial threat?
i’m wondering the same
Every Me Cfs Patient has genuine viral threats. Its an immune dysfunction that got overwhelmed by viruses.
My understanding is that the innate immunity is stuck on. The "cure" is to flick the switch to the "off" position.
It should still turn back on when necessary.
Hello Professor Davis and Janet,
Thank you for your continued dedication to the cause of ME/CFS.
I’m wondering if NMN, the NAD precursor, which is a popular substance right now, can help increase ATP in a ME/CFS patient’s cells?
Thanks sharing! Btw, The learn more link in the description is not working.
Thank you
Hello, have you looked at thiamine deficiencies in relation to chronic illnesses? I tried a high dose thiamine protocol and am feeling much better.
Is neutropenia common in me/cfs. I've certainly had periods of neutropenia that "seem" to correlate with inflammation
myself as well... 14 years of low end of normal neutrophils
So ME is an autoimmune disease? Because a hallmark of autoimmune diseases is the permanent activation of innate immunity.
For 2 ½ decades I've exclaimed countless times, to my large family, that MY IMMUNE SYSTEM MUST BE STUCK 'ON' & in OVERDRIVE :(.
In fact, I feel convinced that it i resume catching bugs, LIKE HEALTHY PEOPLE DO, that'll mean that i no longer [had] ME/CFS !!! IDK, just my weird logic ;)
Here's a very brief rundown to explain why I think this could be so:
26 yrs ago I was suddenly stricken while beginning the (light) weightlifting portion of my workout routine Id faithfully did 3x per. I was pregnant with our FIFTH (of 6) kids & without getting into a long narrative, i just want to share that in ALL THOSE YEAR with 6 kids attending 3 different schools, having much close contact (nursed each an avg 2 yrs) inc each sleeping w/ mommy ranging from 2 - 5 yrs...
Hubby took them to school & helped with baths, homework & meals.
It seemed that whenever some BUG was brought home my husband would also become ill w/ upper respiratory, flu, typical contagious maladies kids share with fheir household. BUT, NOT ME! Our kids range is 16 yeara so thats A LOT of years for me & my family ro notice that MOMMY [NEVER] GOT ILL! I sometimes would get the initial sensation in my throat or sinus pressure but never went past a momentary sensation
COULD DR. Ron Davis's speculation of the innate immune system being STUCK ON, be what has made me almost 100% immune, i had SIX bitties sipping on my straw, coughing in my face when a fit of coughs overcame them...IOW I naturally had much more exposure to them than their dad yet he caught whatever was brought home more often than not!
How long before a diagnostic test??
Yes, Yes, Yes. First time I'm excited, resonate so true with my 22 year experience with ME. Had a few experience all related to virus/ immunsystem activation. Active viruses makes me free from ME but after it gives longterm regression. Novavax x2 has me vastly improved. Thank you both for your love to your son that spills over to so many of us that just want to live.
Ar the neutrophils slower because of the shunt? If they run on ATP, they would be slower
It probably would be a good idea to have more urgency in this research. Ron isn’t getting any younger
I have severe ME and no one in this country,the US, cares, I've tried to get help so many times and no one cares or understands at all. I can barely move the last 3 months has been so bad I can't even hardly go to the bathroom I can't get to a shower, i can barely eat. So called medical professionals don't take me seriously at all and are just abusive so I'm stuck living in my car now and I can't even drive. I'm going to die soon because of people's lack of empathy. I'm only 34. I have diagnosed gastroparesis.
Do not loose hope God willing you will feel better soon
What is happening with "Whitney"? He's not at home, they can't visit?
He is at home. He can’t tolerate visits.
CoQ10 seems to have snapped me out of my resent relapse.
Where's RONNY??
Severe ME seems like ALS to me. There is no known cure for either. All my muscles don't work hardly my stomach muscles don't work well I have gastroparesis. It seems like ALS, but of course I don't know and I can't find any doctors who care enough to find out.
Plzzz I beg help!!!.family just starting forcing me now getting me out bed taking me hr.away dr.saying she can get me back 2 quality of life and forcing my legs and arms physical therapy.ihad cfs over 12 yrs got covid last Jan. got better but went downhill cause try to push while very fatigued stayed in crash bc they don't believe u can worsen permanently.they say long covid.but IT IS NOT!!!that dr.cant get me back precovd bc this has nothing g 2 do with covid.i can't talk and barely use hands worse by the day.dr.tells them she can get me b,ack but I have 2 be willing.they say ii not try and they stay mad and say I'm negative plzzzz I beg.no one listen 2 me.crash now bc text.hard breathe bc fatigue dr says something else won't listen! Plzzz die don't know if make this week plzzzz call someone or something.killing me
Until we start looking at vaccine and P harma injury I don't think we'll get anywhere in understanding ME and that's just fine with the establishment so our numbers will keep growing.
Test for genetic Ataxias
I am extreme severe.only move hands little eat little
🥰🥰🥰
Fuckin, this bloke takes his time!! Hurry up!!
Hey , be nice and respectful . Even if he doesn’t read your comment .
We all want a cure , but it doesn’t take over night . Bless this man .
CFS is devastating and sad but I just don’t know why they continue to maintain this is what Whitney has. There are progressive and late onset neurological disorders caused by faulty genes and/or chromosomes that haven’t even been named yet. When you see the pictures of some of these individuals, you see something so much more reminiscent of Whitney. Sure, yes, he has “chronic” “fatigue”. Maybe his mitochondria aren’t programmed to work properly. Maybe he’s got some kind of dystrophy or dementia. What about ataxia? There are new genes for ataxia being discovered often. He’s definitely got something, but curing CFS isn’t going to help him. These parents have to discover, uncover and deal with what he really has before it shows up in the family tree again.
CFS is not „chronic fatigue“
Where are ya Ron?? Gone missing again!!
You get to many thanks Ron,for someone who hasn't delivered anything to help the MECFS community!! Sit in front of the mirror and have a good hard look at yourself and ask yourself if your the man for the job, because it's been over a decade and nothing has come to fruition!!
Where's Wally,for the MECFS community,it where's Ronny??
Where are ya Ronny Boy?? Gone fishing again lol.
C'mon Ronny Boy,get a move on would ya and get this so called optimism you've been talking about for 10 yrs and turn it into diagnostic test!! It's been 8 months and we haven't heard a word from ya!!
When is it gonna change?? I'm sick of your optimism,it's been going on for a decade!!