2022 Stanford Working Group Meeting on the Molecular Basis of ME/CFS: video update from Ron Davis
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- Опубліковано 8 лип 2024
- Annual Stanford Working Group Meeting on the Molecular Basis of ME/CFS, Sept 6-9, 2022, video update from Ron Davis and Janet Dafoe!
The working group is a week-long virtual event for biomedical researchers to share ideas and knowledge about the molecular basis of ME/CFS. One of the primary intentions of this symposium is to discuss unpublished data and research, and for privacy reasons, this meeting will be closed to the general public.
The meeting will be held from Tuesday, September 6, 2022 through Friday, September 9, 2022.
Be sure to follow @JanetDafoe on Twitter for symposium updates throughout the week - Наука та технологія
I patiently wait for these UA-cam videos as this is my only way to get updated information about ME/CFS- I'm in severe stage and been 'barely living' for 17 years now. I cannot be on Facebook- no energy for this...friends/family don't understand that even a phone call is too much for me- have lost many friends and have even gotten into arguments over me having ME/CFS and their lack of understanding. This isn't a life- so I wait.... I refused to believe that I would ever get better. Until recently- you two have given me hope- and for this I say thank you for helping us out here that have no voice. God Bless you both and your family- including Frankie!
I didn't know how much I needed to hear this until I did. Thank you! I really broke down hearing this. 12:49 From Janet, "We want you to know that during all of this we are thinking about you, the patients, all the time. And we are very devastated about the amount of suffering that is happening that you are experiencing. We are just hoping and praying and doing everything we can to find answers soon. "
If anyone in the world can figure it out and find a cure, it is Ron Davis, Janet Dafoe, and the group of great minds you are bringing together. You give us so much hope! Thank you for never giving up.
In our household we regard you as a Saint. We follow your research with great hope. Your leadership inspires us.
Thank you for all that you do for the MECFS community. Your family represents the MECFS trifecta. World renowned researcher, fierce advocate and warrior patient. Keeping my fingers crossed the meeting is successful and much gets accomplished on the way to finding a cure. Thank you so much !!!
Thank you to the moon & back for caring, & for devoting so much of your lives to helping so many of us - who are too weak to fight for ourselves. We're so grateful. Thank you.
Dr. Davis, what you said about long covid research neglecting the current and developing science in ME/CFS reminded me of how MDs, especially orthopaedic surgeons, similarly dismiss podiatrists regarding foot and ankle biomechanics, surgery, etc. I have been both, podiatrist and orthopaedic surgeon, and am currently a moderately-severe ME/CFS patient. I picked up on the neglect, but, for me, it rang a bell, mimicking a similar experience. I salute you for recognizing and being upfront about it.
Thanks Janet & Ron for keeping the MECFS community informed. It means a lot 😊
Thank you two so much for your dedication and hard work. Listening to you brought tears to my eyes. I have been suffering with ME/CFS for 36 years. It is has been hard. Thank you for acknowledging that and thank you for giving all of us hope!
Many thanks Ron and Janet for your ongoing tireless work and fight for ME/CFS.
You are such an inspiration! 🌟
Despite the desperation of so many sufferers your relaxed and confidant approach and trial of collaboration from other fields of research helps us all remain hopeful!
Love your gorgeous little dog🤗❤🐶...
My prayers go out for you all and especially Whitney🙏💫
Thank you so much for the update! This gives me so much hope! 😭🙌 Long Covid (turned ME/CFS) sufferer here, housebound/bedbound 2 years and counting...used to run 5 days a week prior to Covid. Still hanging on... I'm very much looking forward to the progress that comes from this conference! 😊
OMF is one of the few research channels I have seen that give me hope that one day I will not only know why this is happening to us ME/CFS sufferers but that a treatment or cure will happen. Thank-you for giving us that hope.
Thank you so much. Your final message of love, that you know it's hard and to please hang in means so much to me I can't even begin to tell you how much 😭🥰
Thank you very much for organizing this wonderful meeting of great minds about the molecular basis of ME/CFS. I hope this safe space to discuss the molecular basis will lead to great collaborations, and ideas that will push the field forward.
Thank you both for all that you do for ME/CFS.
Thank you for your tireless work Janet and Ron 🙏
Thank you for all you do. Thank you for giving us hope, if not for us, those that may not suffer in the future.
This is what I love about Ron's research and his input into the field, the focus on trying to find a cure, and as a route to doing that the focus on putting together a comprehensive picture... joining up the dots. I related so much to what he says in this, it's how I've felt about the research field since I started reading about ME when I first got sick 6 or 7 years ago.
Love the sound of this meeting, it's lovely that people will get the chance to brain storm and hear discussion about current research that's happening and exchange ideas, I'm glad it's not getting recorded since that's what's best for the discussion. Good luck, I hope it goes well! Thanks for letting us know about what's happening, it's always so exciting to hear about the progress. You guys keep me so hopeful.
And hi Frankie! So adorable!
What a wonderful initiative and update. Ron and Janet are a great combination.
Thank you for bringing everyone together. Hopefully some answers will come from it.
Thank you for all the work you are doing. It's very moving to see and know that progress is being made. May this serve all those who are suffering.
Thank you for communicating all of this to Me/CFS community. I love the format in which you as a couple do this brilliantly.
Great to create a forum where half-baked ideas can move towards becoming fully baked! Thanks for all your work!
I'm so grateful for these updates. You had me in tears at the end because your words of caring felt authentic. Very few people understand the horror of this disease unless they are knee deep in it. Your impact is immeasurable.
I just got so sad. My bio resonance therapist suggested me to go for a walk an hour/day. I can’t even move freely inside the home. (Going for a walk in the nearby nature is a dream of mine.) After once again trying to explain to her what it means to have ME/CFS, she suggested that I would work out lifting bottles of water when the body can hardly manage enough energy for me to lift an arm. How much explaining is it going to take? I have explained to her that we have inflammation in the brain and infection, that the body can not produce energy properly, etc. Would she suggest the same thing for a person with fever? Still she suggests body training. I’ve been in “higher spirit” since I had some improvement after taking anti parasitic things. Her lack of understanding got me crying. I just wanted to say it to someone who understands.
@@annahallgren1055
I understand you so well, dear Anna😔... and my heart goes out to you🙏💕...
I too am so limited with ME/CFS and have had similar advice from many physicians and people who just cannot see/ understand or don't want to accept this terrible disease.
We will never give up! Despite the odds, keep the faith🌈...
Our bodies may be weak but our spirit is strong!
Sending you lots of love and a hug in thought💖
@@Angel-rp4nu Thank you for your response. It’s meaningful to know that there are other persons that understands.
You’re right -we’re strong in spirit! 💖 There’s many things to try and I have a father that’s ill too, so I’m not giving up and since I got at least a some improvement I have a bit of hope.
Love and a hug to you too and whoever is fighting ME/CFS that reads this 💗
@@annahallgren1055 Dearest Anna💖
Thank you so much! You and your Dad will be in my prayers🙏...
I feel in a way we must be connected in spirit...
I too am caring for my Dad who is in prep for surgery (well, am doing as much as i can but too weak to do what i wish i could)
You have a big ❤!
If we both had better health and more energy we could be distant friends🤗.
You are in my thoughts, Anna!
Lots of Love and hug🌟💫💕
@@Angel-rp4nu 💖 Thank you! I wish for you’re dad to be well too ✨💚💖💙
You have a big heart too💗
Yes, I believe we’re connected, all of us more or less. On the quantum level distance doesn’t matter 😊
💗💖💞✨
Our cries out for help have not been answered. We suffer every single day and we are living a living death essentially.
I have ME/CFS, I have suffered with chronic Epstein Barr and have had Mononucleosis every year since 2009!! Was diagnosed with ME in 2018. I am having a good day if I can wash a couple dishes. But then I am sick. I could go on and on…I have such a long story!! I truly appreciate everything you do! I hope our stories can help you get to the bottom of this!
You’re a blessing, makes me happy just seeing you talking. Hugs and gratefulness from Spain.
All of us ME/CFS patients are so grateful for your work!
So grateful for all you are doing Ron ♥️
You two are wonderful. Thank you so much!
Thank you both so much love from the UK 🇬🇧 ❤
Dear Janet and Ron. 1000 thanks to you guys and the rest of the ME-researchers for devoting your entire lifes to solving this enigma. We are tremendously grateful and these updates mean the world to us. We love you back ❤❤❤🫂👍👋🙏❤❤❤!
Love the work of Ron and the OMF, thank you so much!
Very exciting. Thank you from the bottom of my heart.
I have been sick since 2009 and I am in the severe category. I would love to have any info on how I can offer you or other researchers my hair samples, blood, etc. I would agree to coming to you, as difficult as it would be. I just want to be helpful despite how severe I am because I have heard that not many of us that are severe aren’t part of the research due to obvious reasons.
I too would like to offer hair sample as I too am severe
Just seen the documentary you guys were in. While I also struggle with chronic fatigue, not to the same degree as in the documentary. None the less it very much takes over my life. I added your guys foundation on my Amazon smile account. Thank you for all you guys do!
I send you my love and appreciation to both of you as well.!
32 yrs with ME/CFS and severe the last 10 of those.
I totally understand the “No recording working group”, it should allow for much better brainstorming and creativity.
Thank you eternally for your dedication and devotion to the community. 🤗🤗🤗
My friend and me really needed this update. Especially her given how hard this has all been for her recently. Thank you both for always caring about us all and just being amazing human beings working towards a cure. Franky is also just a straight up cutie!!!
One quick question, I think Ron Davis and his team found that if they put healthy cells in ME patients’ blood (or maybe it was serum) the cells developed the “ME phenotype.”
Was there any progress on discovering what the blood factor causing this is? Or what type of molecule it is likely to be? A protein, a fat or a small molecule?
I was wondering about that too. If it would be an autoantibody, it should be easy to spot.
Its viral proteins. Thats whats in the blood and doing the damage.
Thank you both, love all your work and love these updates
We know your are the kindest genuine humans. So valuable to us all. X
Thank you for all of your time and effort!
So glad this is happening. Wish there was one of these every month! Looking forward to updates.
Thank you for all you do ! I am hopeful this meeting will bear fruit. P.S. love the photo bomb.
Thank you for your enduring work. It can't be easy. I'm so shocked that long-covid research is ignoring ME research. Sigh. I'm glad you mentioned remission. I'm only in remission because I stopped working and have prioritized rest and eliminated stress. I still struggle when attempting to introduce work or projects. The negative impact is still there and leads to physical, mental, and emotional setbacks that lasts for months.
Thank You for looking into a cure.How about the California wildfires impact on Me/cfs with toxic exposure(s)
you guys are amazing, such a gift, thank you.
Deepest thanks, Ron and Janet and ALL of you, you are our heroes! God bless
THANK YOU!!!!!!
Thank you Ron and Janet
My life was completely destroyed by this disease. It’s incredibly difficult to live a normal life. I’ve been waiting and waiting for a treatment or cure and nothing has happened. Abilify has helped but it isn’t a cure.
How does Abilify help? With which symptoms?
You’re doing great work. I think vague headline tweets on the event would be enough for patients- “we’re having really interesting discussions about x” for example. Or perhaps the discussion might generate questions for patients? “When you went into remission did x happen just before?“.
I feel you’re right that (in the most part) this disease is entirely reversible, it’s about working out how to deliberately cause that change, and the minority who go into remission would be interesting to study. I have previously got to the point I didn’t get PEM (working full time hours, socialising, walking miles) but I don’t know how, or why I can’t get there now. I’ve spent a decade now between moderate-severe with no mild phases.
Thank you for this info, exciting stuff! Always happy to see Ron's excited face 😀
Thank you both so very much! 🙏🏻💖
Thank you for sharing this with us
Pretty sure there are subgroups:
-Chronic viral infections the body can't shake off (faulty antibodies)
-autoantibodies
-Bloodclots
Or all together. The worst to treat will be the first one
The autoantibodies can’t be cured
@@TeaLeafer99 Autoantibodies are the easiest to treat
I would love all the answers. However, until we (researchers like you) do get all the answers I will take any incremental improvements that could change lives. Much appreciated.
Thank you both very much
Best of luck. Hope you get the funding.
A friend had spontaneous remission after multiple antibiotic infusions at hospital for an infected wound caused by treading by on a nail. I’ve been intrigued by that- wish I could try it myself
How severe was he affected by ME? And is he still fine?
@@hasangenc2922 He wasn’t bedridden all the time but had episodes of not functioning at all /overwhelm/bed. Yes he was very fine and energetic for quite few years -though just had Covid and now finds his fatigue is returning- which is consistent with theory that root cause of ME/LC is biological and viral (often associated with EBV).
@@annon3173 so did he got worse again?
@@hasangenc2922 yes after covid. So retired disabled ( ex vet) with cfs/me- was ill for 10 years, then remission for 5 years. Got covid 3 mths ago- feeling more fatigued than before it but not as bad as pre- remission
Thank you!
Love your enthusiasm and mission critical focus on molecular basis. Good luck with aligning the troops. Let's do one thing well then move to the next. I hope to be able to contribute in a material way $$ in the near future. My mission is to help with the funding you need to support fail fast ideas. I'm about to launch an initiative that I hope will deliver this. The business world operates like this, I would love to see the medical research world do this. Have my fingers and toes crossed that this works for you all. I so hope your meeting allows everyone to take fear off the table. I really feel for you having to work in a space that comes under so much scrutiny. Fully and comprehensively support everything you are doing.
Hi there! Are you inviting Dr. Jarred Younger from Univ of Alabama Birmingham? He's doing a genetic study on ME/CFS and has some great molecular imaging techniques of the brain. (Layman's terminology - but he's on the cutting edge in this area I believe.)
Yes. He’s one of the speakers.
@@janetld I hope he's already done the test to see if leukocytes infiltrate the brain in ME/CFS patients. 23 June (I think) he said in 2-3 months he'd have tested the 1st ME/CFS patient so fingers crossed 😀
Thank you both for such enlightening and hopeful updates like this. Great minds collaborating can catalyze new discoveries. I want my life back or at least more function so I can participate more fully in this life
I wonder when we will get to the point that it will be possible to create a comprehensive accurate computer model of human biochemistry that could take as its input some measurements of a patients genome and other measurable aspects of that patients present biochemistry. With such a computer model one could virtually test drug treatments and other medical interventions. Imagine how the practice of medicine would change.
Sending you the "Love" its all I have left!
Well today is the 7th and I thought I'd check in. On the 9th a medical appointment with Grants Pass Oregon VA clinics. They cant do anything for me...yet G-d bless you all and please help me not say stupid things!
You are amazing! Thank you for all you do! 💙
Thank you from my Soul...🙏🗽💕
Would it be helpful to study the brain in people that have passed away?? Have any studies like this been done?? Thank you so much for all you do!! I do feel hopeful that you will find the treatment for this awful disease. Again thank you soooo much, you guys are awesome!
Thank you both🙏🏻
Sounds hopeful, thanks Ron and Janet. My wife has had ME/CFS for 4 decades.
How is your son going?
Thank you! 💙
I noticed something yesterday - I have not had hiccups since developing symptoms of ME/CFS ( still undiagnosed ), does anyone else with the disease find that they do not get hiccups any longer ?
I sneeze lots. Yes ,it's true, I havnt had hiccups. I think I know what a sneeze is trying to do...I think it's trying to start electricity
Thank you sooo much!
Thank you OMF
Thank you so much 🙏
Thank you ♥️
I'm waiting on your find re the blockages...
I was poisoned by photographic chemicals that crossed the placenta that my parents worked with when i was a fetus & was born with ME/CFS as well as 2 versions of EDS ...thank you for trying to help us❗🙏🙂
God bless you
Mercury from amalgam fillings would be a great place to start.not too mention mercury in childhood vaccines
This is just unbelievable!
If we keep looking at the damage of the mitochondria, we will never solve this disease. We need medication that targets viral proteins and immunmodulators.
When's the next update??
If it’s closed to the public, how can we tune in?
💛💛💛💛
It got deleted and came back agdin 10 min later.
Heroes!!!
Can you ask a church to use their building during the week for a meeting for free?
I offered to work for free for them using my software engineering skills, they didnt reply even though they confirmed they got my resume and need a software engineer, i complained about it on phoenix rising and was censored there.
Suspicious...
❤️
well you know I feel like hell but balancing the whole thing, I hope the original thoughts of the original investigators come thru this due to the private nature of the symposium. Good luck getting by government oversight upon the release of the true nature of this disease.
Frankie is a cutie!
Autoantibodies.......I have 5 autoimmune diseases started long after M.E. ...my mum's mums family of girls all had autoimmune diseases. Any ideas to stop Rheumatoid (by far the worst), and no drugs have worked so far and tolerating them sometimes impossible. What a life, but still hopeful👍
Got M.E about 14, aged 64 now Rheumatoid began 2&half years ago...other autoimmune diseases occured from teens to now
The autoimmune ME could be definitely cureable, its the people with severe ME that haven't got autoantibodies are the real problem.
@@artansadiki3244 any ideas what might help treat that?
What is your twotter name Janet?
You really need to hurry up!!
Missing person alert 📢
The average age,life expectancy in USA is 78-79... Your 81 Ron!! You really need, to get your skates on and figure out how to cure it!!