Ron Davis Research Update: DNA/RNA Tech with Peidong Shen, PhD

Today, Ron Davis, PhD, and Janet Dafoe, PhD, sit down to discuss how DNA & RNA technology is being developed and used at Stanford to advance research into ME/CFS, Long COVID, and related multi-system chronic complex diseases (msCCD). This technology is being developed in partnership with Peidong Shen, PhD.
Transcript available here: bit.ly/3PwkptU

[@olivertruswell]

Thanks for allowing comments on this one. The Itaconate Pathway is the most intriguing and promising research that I've come across in following ME research for 10 years. I'm so excited to see where this leads! Thank you for all your hard work. You have no idea how much these updates help morale. They keep me motivated and positive for the future.

[@olivertruswell]

Also to add, this format for presenting research is great! Janet provides the layperson's view and I think she brings out the best in Ron. I think Ron feels a lot more comfortable doing these with her sat beside her rather than talking to a camera lens.

[@priyaluce]

She knows the questions to ask better than anyone!

[@ieltsliz]

So wonderful to hear. Love you both and all who are working with you xx

[@yuriyoung5673]

So excited for these updates! Janet, you're a great interviewer for us lay people 😅😂💖 Happy birthday Ron!

[@ixchelkali]

Thanks for clarifying that about Ron's excited face! 😂😂😂 After 20+ years of living with M.E., I've learned to curb my enthusiasm about new developments, but I can't help feeling a little excited myself. Or at least hopeful.

[@denda2643]

So charming, Janet, when you are pointing out that this is the excited Ron!:-) Thank you all so much for your endless effords! Lots of love.

[@lindabailey1828]

Love you Dr Ron without your work we would be doomed

[@solar979]

Thank you so much. It is easier to endure when we see and hear you two. Happy Birthday Dr. Davis! 💖

[@folaraj6343]

Thank you!❤️ You give me hope of one day getting my life back again, the ability to speak, eat, sit up or maybe even walk again one day after decades of this living death.

[@sweetiepienumber1]

"Keep hope alive!" Thank you for helping a long-time sufferer understand that there are very smart researchers working towards answers. We all have to live in this moment, yet hope is valuable. Love you folks.

[@windsordance3698]

I agree! I have been journeying through ME/CFS for a lifetime of 38 years, since the age of 24. Ignored & gaslighted by mainstream medicine for many years, relying on alternative therapies for any relief at all, it is marvellous to hear what is now being done for all of us who are fed up with being invisible. Without hope there is nothing. I am excited too! Smiling from ear to ear😁

[@helenjurgenson8356]

Thank you for your “team effort” on explaining and updating progress. It is so much appreciated. My adult son is dealing with this and I am a very concerned mother. Please know how important your work is. And a very happy birthday Ron. You two are a great team.❤️❤️

[@megangardner2766]

Has anyone looked at virus/infection hiding in the Vagus nerve? Thank you for all your work 💯!

[@EndersWorlds]

I LOVE watching all these videos on the research, I find it so fascinating, but it also gives me so much hope. I watch gthem again soemtiomes when I'm feeling a bit sorry for myself lol. cheers me right up. Every piece of research whether it's a postiive find or a negative one (ie a theory that doesn't pan out in the end) help me feel like we're moving forward towards an answer. But there's alot of extra excitement with everything that's coming out or being done recently, it feels alot more cohesive and like putting the jigsaw pieces together at last. SO so exciting. Thank you Ron, and Janet, you make a great team on these videos. THanks for all your work. I hope Whitney is doing alright. Knowing you are all out there fighting for him and for us, and knowing that Whitney is hanging in there and keeping on going every day, helps me on my bad days to keep going too. Sending you all good thoughts.💙

[@windsordance3698]

Hello Kate! I absolutely agree with you! I am from Australia & stuck in the no man’s land of ME/CFS in particular since a misdiagnosed attack of rheumatic fever in 1984, when it didn’t even have a name. My case, & I’m sure many others in varying ways, was caused by extreme trauma from the time I was born. ( A psychopathic, malignant narcissist much older sister who severely abused & tried to obliterate me in every possible way, including 35 murder attempts, including 19 near death experiences) Trauma of any kind & it’s effect on autoimmune diseases is also an area that requires much more research. SOMAtherapy is the best treatment I have found to unlock the body gently from this prison. Support & hope as there is on this channel is invaluable. Blessings to you, Kate, & to all of us who struggle. Paula

[@bugz6223]

my husband shows excitement the same way Ron does! so grateful for the work you are doing.

[@gmbowdle]

As someone who suffers from late stage lyme and chronic fatigue; I would be willing to give any samples that you might need.

[@KissTheFuture]

These updates are a lifeline; thank you so much!

[@anonamuss1604]

I always save these videos for when I'm having a really bad day. I probably take less info in but it makes me feel so much better knowing this is going on in the background. And any Ron Davis is fine by me, looking excited or not.

[@CarolAnnBarrows]

Janet Dafoe, your an awesome interviewer and translator of Ron Davis!!!!!

[@heatherz1844]

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!

[@frid123]

Thankyou for informing us about your research! I can't find any information in my own country, so your information gives me hope about a "light in the end of the tunnel" ! It means a lot! ❤️ Thankyou! ❤️

[@sherip1270]

Thank you, Superman, for sharing your information and giving us hope. Janet, you are awesome at reminding your brilliant hubby to speak our language too. Love you guys!

[@beeholtzclaw7935]

Very thankful for the up-dates from you both! As a care-giver for our severe son this gives us hope. Planing a educational/fund riser night for OMF at our church next month and will be passing on your excitement!!

[@sweetiepienumber1]

Thank you from a patient for the fundraising. Much success!

[@jan504]

I hope you will work with Dr. John Chia on the enterovirus aspect, so you won't have to re-plow already plowed ground. He has years and years of research on enterovirus, that he has found in tissue (not the blood).

[@joshs2444]

My deepest thanks to you and everyone working on this. I find it very exciting that you guys are pursuing to look for different pathogens that could be causing this cascade. I see you are mostly looking at what viruses could be doing this but I also think it would be amazing if you could focus on tickborne infections such as Borrelia, Bartonella, Anaplasma, Babesia, and more. Ticks not only carry bacteria like the many species of Borrelia spirochetes, but also include viruses like powassan, and parasites like Babesia. There's even evidence in some journals that the toxoplasma parasite and bartonella bacteria can be transmitted by ticks but it hasn't been given enough attention. Cats are the most known for spreading those two infections. Since there seems to be a multitude of different infections working at play here in developing mecfs I think it would be very important to look at ticks being a possible vector for transmitting a multitude of pathogens at once to a person which can initiate this disease process. Theres evidence of Borrelia in particular to affect connective tissue which seems to be implicated in many mecfs patients due to spirochetes sequestering themselves into tendons, ligaments, muscles, and joints in a way to avoid the immune system. They have also been found in the brains of patients and can affect cranial nerves which could implicate the autonomic nervous system. Bartonella seems to affect the endothelial cells of the vascular system in which mecfs patients also have trouble with blood flow issues. It's also very curious that people who have Chronic Lyme were known to have low numbers of CD57 NK cells just like mecfs patients. As with MECFS, people suffering from Chronic Lyme were ignored and not believed despite there now being many studies showing the persistence of Borrelia and tickborne infections. To this day there still hasn't been adequate attention given to Lyme disease and all the different coinfections so many people go undiagnosed. The standard testing is partly to blame since it is inadequate in detecting many Lyme cases. Also not everyone gets a rash which is a common misconception. The coinfections which many people have, are never even tested for in the first place. I was tested multiple times for a whole bunch of common and uncommon viruses and I came back negative for each one. It was only when I got high sensitivty testing for tickborne infections that I tested postive for many species of Borrelia, Bartonella, and Anaplasma. I had many ticks bite me in my life and was working at a nature preserve up until I had gotten sick and no one ever thought to test me for any of this. Even while living in the east coast where it's very prevalent. I meet all the clinical symptoms for MECFS and Chronic Lyme. It seems to be a very common story for people. There just doesn't seem to be any awareness or attention given to it for some reason. Anyways I just thought I would share my thoughts and again thank you for the amazing work you guys are doing!

[@MB-tt9gb]

Thank you soooo! much!! for doing all that you ( two) are doing!! 💖💖💖💖 You two are hero's!! 💖💖💖

[@LukeFisherGAS]

Belated Happy Birthday Ron! Thank you, your research gives me so much hope

[@discardedvetdoc]

I am a desert storm veteran with gulf war illness. CFS is getting worse over 31 years i am 100% disabled now. I hope your research can help us too! Gulf war illness seems to be alot like long covid at least on a general/common symptoms level for most. gut/breathing/heart/brain issues

[@Justusson]

Sorry to hear. I got I’ll myself in high school, at the age of 18-19, from a viral infection. Possibly the SARS, which is related to the covid we have had now for a while - as the Asian flu of -68(?). It’s strange how so many things can set off this illness. Viruses, bacterias, vaccine, trauma, chemicals - as in your case I imagine? Hopefully, how unfortunate this covid have been, perhaps now there will be research and funding enough to help us others along with our problems. Both ME and Gulf War illness,.. 🤞

[@roonbooks1418]

Have you researched the fact that prof. Garth Nicholson has found mycoplasma fermentans in people with gulf war illness.he treated gulf war veterans with many rounds of antibiotics and they got better

[@brobinson8614]

@Discarded Vet, You have a great researcher Dr Nancy Klimas, who is working in Gulf War illness, ME/CFS and now Long Covid. I think a therapy or a cure for one of them will help us all. Question were you deployed or still on the ships as I heard both got GWI, meaning the only thing in common was the vaccines for multiple biological weapons pathogens, meaning you may have all had to many powerful immune hits all at once, that combined with the high stress environment of war increases hormone levels which are known to interfere with our immune cytokines, which could possibly have caused autoimmunity. Maybe autoantibodies are targeting receptors of the adrenergic system or any other receptor of an essential bodily function.

[@10milesfromnowhere]

Thank you Janet and Ron (and team)!

[@elizabeththomas6323]

Thanks so much for posting these videos and making the research accessable to lay people to follow. It gives me hope ♥️ Even if a treatment was years off to have an explanation would be HUGE - life changing... doctors, family, friends, and insurance would believe us.

[@MOJORAPSCALLION]

Happy Birthday Ron! Thank you both so much for all your dedication sending love and the wider team. Love to Whitney also. Wish I could donate I’m trying to survive on £52 a week. I will share the fundraiser however. Thank you Janet for your brilliant interviews you have been doing so helpful to us all 🙏🏼♥️I have a j tube also wish more of us could help no one will look at me here in the UK..

[@libraryfiles4470]

Always give these updates a thumbs up 👍 so that the video will pop up on more steams and get more views.

[@lydiaevangelisti1897]

This research is the only thing that keeps me going right now. Thank you.

[@andocobo]

You do a great job with these interview Janet - thanks so much for keeping us all informed

[@brendanrobinson2415]

I’ve noticed I donate each time I hear Ron is excited!!! I see we can donate here does that go direct to Ron’s work? Last time I donated to ‘Standard Genome Technology Center’ and it has a photo of Ron and just above his photo it says ‘Give a donation’ and then it shows you are giving directly to ‘Chronic Fatigue Syndrome’ Either way I’m happy to help, although I don’t have much money, if everyone helps we will get closer to a treatment faster!!

[@goldenrochelle888]

Thank you for all your incredible work and ideas. And your excitement 😁🙌

[@kristinae.7084]

Even when I don't understand the science, every single one of your videos gives me HOPE because I know that really smart people are working on solutions to help me feel better! Thank you from the bottom of my heart.

[@brendanrobinson2415]

These videos bring some hope and hope is a great thing with this fire disease. Imagine being around the day we get a cure or a medical therapy!! OMG that will be the greatest day of our entire lives!!! We will cry with joy, finally set free to get back into life again I’d even be happy to be half as better, even a 1/4 better would make a massive difference!!

[@hometechUK]

So exited wonder what the time frame to complete this? Yes with someone that has beeninfected with majority in the virus family Inc CMV that caused me to get ME CFS, I hope we can just switch off the immune over reaction!

[@riceman78]

Lol, thanks Janet for showing us "excited Ron"!

[@daniw.5481]

Soo amazing, you guys are smashing it! Thank you so much for never giving up on us and happy birthday Ron!

[@Kaylaut]

Thank you for posting this! I look forward to all of these updates - they give me hope! I really appreciate the 'interview' format. And I like how calm you both are. It helps me be able to watch all of the videos.

[@Skitkitten1]

Thank you for everything you do. 💖 this is very interesting finds. I, as a ME/CFS patient, is getting hope from theese finds and your videos. Thank you.

[@lelediamondASMR]

Thank you for your hard work for us it means so much. Gives me hope.

[@Gusski84]

ME/CFS the original Gordian knot. Dr Ron please untie it ...

[@Justusson]

Thanks for your dedication to this issue! 💕 I hope there will be a cure for it some day soon,.. 🙏

[@PS-er1qm]

I had near bedridden ME/CFS for 2 years and I found something which I can take which allows me to walk long distances every day and also not suffer from post exertional malaise. What worked for me was Caprylic Acid in the form of 50% magnesium Caprylate and 50% calcium Caprylate. I started on a dose of 450mg per day which was too high a starting dose for me so it made me really ill for the first 2 days from the bacterial toxic die off which also made my wrists and ankles break out in open sores. After day 2 my energy started increasing which allowed me to be able to do gradual exercise therapy. Over a period of about 4 months I gradually increased my daily dose to 6000mg per day and my energy increased hugely. After 4 months I was walking over 20km every day and cycling between 10-30km every day without suffering from post exertional malaise. Has anyone extensively studied Caprylic Acid as a energy booster for ME/CFS yet? Other important notes: I was on a FODMAP diet high in meat proteins. Gluten and Dairy free. Hope this helps somebody 👍 My ME/CFS was likely caused by Glandular Fever, (EBV) which is an enveloped virus Caprylic Acid has been proven to destroy by promoting hydrolysis. Caprylic Acid is also able to pass through the blood brain barrier too 👍

[@arlenefisher1164]

I'm going to discuss this with my Dr. Thank you! I have chronic active EBV. May I ask how you came to know this? If a Dr. can you share his/her name?

[@oliviabruno1]

At the end of the videos, I would love to hear any updates about how your son, Whitney. Even if nothing has changed. I worry about him a lot. Thanks.

[@tayldahl1]

Thank you for doing this work! 🙏

[@reemssmeer-maar-dan-omgeke9028]

From suffering from cfs for 5 years now (im27) i can tell you. The infection resided (in my case) in the cavities around the ears, nose forehead throat lungs. I got chronic inflamed cavities always as a first symptom to exercise. I hope you Read this 💪

[@vanessalele3953]

What do you mean resided? Is it gone now?

[@reemssmeer-maar-dan-omgeke9028]

@@vanessalele3953 *resides. Sorry

[@vanessalele3953]

@@reemssmeer-maar-dan-omgeke9028 there must be a way to stop it....you tried virostatica?

[@reemssmeer-maar-dan-omgeke9028]

@@vanessalele3953 no, have you? Im looking into a theory that States reduced bloodflow into small veins

[@vanessalele3953]

@@reemssmeer-maar-dan-omgeke9028 Not yet. You mean bloodclotting?

[@meeexxxxX4]

What a power couple. Thank you guys (and the rest of the OMF team) so much for these videos. They provide much needed hope. So grateful for everything you all are doing ❤

[@nicokelly6453]

I love to hear about the research y'all are doing, it gives me hope for us understanding ME/CFS more and helping patients. Thank you for all you do, and thanks for the updates.

[@siccanuck2380]

You two are so cute together 😀 Love Ron’s excited face 😅😅 Happy you’re looking into enteroviruses!

[@Starfish3942]

Thank you both, so interesting and wonderful to see someone who understands this illness and has a dedicated research team. So grateful for all your efforts.

[@Gazumbo]

Thank you so so much to you both for doing these interviews and updates. They are so interesting to watch and learn. I can’t thank you enough. Happy birthday Ron!

[@ajtwain]

I am a CFS patient. My history was that I had an EBV infection in 2007 and then became infected by HHV-6 during EBV recovery and that triggered my CFS. I self treated with GcMAF due to losing 5 teeth from low immunity but this triggered systemic lupus erythematosis. Interestingly EBV antibodies went totally absent but the HHV-6 antibodies are present. I think my CFS is a co-infection by HHV-6 during EBV recovery. Bhupesh Prusty says there is evidence that HHV-6 micro RNA trigger a defensive mitochondrial fragmentation response which we CFS patients feel as fatigue. He says a micro RNA inhibitor drug is readily accessible as an effective treatment.

[@frid123]

Thankyou so very much for all the work you are doing! And thankyou for informing us about your rese

[@maxnits9556]

Thank you!

[@ash0787]

I'm typically moderate but sometimes get severe phases and I have been feeling lately that they might be representative of a virus thats popping up all of a sudden in response to some sort of failure of homostasis following overexercise or stress or too much PEM over a period of time, reason I say that is because I get these chemical burn like sores that appear on my fingers which usually indicates im becoming more ill or about to, I also had bad finger arthritis and rash on my hands when I was severe and only then, I do get a few small dots on my hands consistently associated with MCS, these appear rapidly though so most likely not viruses.

[@NiobraraLaCross]

Wonderful work. This is very exciting for me as I have ME/CFS-Thank you both as well as your colleagues. And thank you Janet, for pointing out your husband's lack of expression; I live with someone who has mild autism and has a great poker face.

[@womaninamerica4572]

Thank you for keeping at it!

[@saramonaghan6262]

The work being done for all of is is truly beyond words of gratitude because if you succeed even by a small increment it may make the difference to one of us suffering a little less to live vs just slowly dying inside - and for that alone you are all truly amazing scientists and caring people. Thank you 😊

[@FionaEm]

Lol at Janet teasing Ron about his expression 😆

[@patrickjohnson1309]

Hurry up,Ron.

[@MP-vw6ix]

💪🏼 from Spain 🇪🇸🙌🙌🙌❤️🙌

[@denisau3646]

I keep wondering what / if there is a connection between this bh enzyme and collagen or conjunctive tissue disorder. A lot of ME / Long Covid have a form of EDS , including me.

[@a_d_s5361]

normal Ron Davis and excited Ron Davis can be a meme haha. Thanks guys!

[@IThinkICare]

No samples available ? Meaning from deceased people? Because he can have any sample invasive or from me ! 15 years is too long.

[@vanessalele3953]

15 years for what?

[@IThinkICare]

@@vanessalele3953 I have CFS for 15 years, at this point I try anything is what I meant.

[@thandles_workshop]

@Janet Dafoe Hi! You guys are doing a great work. I have a theory why it's so hard to find anything from me/cfs-patient blood work or spinal fluid. I believe patient must be on PEM when the blood test/spinal fluid is taken. I believe most of us feel pretty much normal without any fysical or mental stress. If the patient is not severe. Yes we too feel sore and muscle pain almost all the time but I think the biggest activation of this disease comes whit PEM. I've got mine twelve years ago after H1N1-virus. I'm keeping my pulse under my at-level and without emotional stress I can live without PEM. I had to beat POTS first with diet and betablockers. It took years to beat. I can avoid PEM but can't live normal life. S l o w l y healing I guess😅 Thanks Janet and Ron👍🏼

[@womaninamerica4572]

I have EBV as well

[@sherrybutts5947]

Words are viruses that penetrate the feelings through the process of thinking

[@Aqueous_Anomaly]

I once cured my CFS early into it with MMS in big doses. It went away for about 6months and I became the fittest I had ever been in that period. So it definitely felt to me that the MMS killed something. The m.e came back when I had a reoccurrence of the original infection that started it which was thrush. Then I couldnt get the mms to work again after that. That was about 4 years ago. I'm am still very sick.

[@Justusson]

What is MMS? I had a similar period of time where I was treated with TCM - traditional Chinese medicine that strengthened my “chi” - as they say. I got a supplement that I, once consuming it, could feel a difference in only hours. After a double dose, I could be up and about it in one to two days - like clockwork. I got better, eventually started training (hard), studying and continued on with work too. I still had to sleep once or twice a day, 30 minutes or so when it flared up. But that was it,.. However, I always crashed to the point of not being able to get up, if I stopped taking them entirely. And I tried, boy did I try,.. Several years in they stopped manufacturing this supplement and I crashed for good, unfortunately, and became bedridden again. It was such a defeat,.. I have tried some of the herbs individually that in it, with no effect. It was said to be the combination. What it really was I don’t know. If they strengthened my body’s energy so it could handle it better? Not develop into a spiral of autoimmune-ness (which I could feel was present)? Get my immune system to work better for any reactivated viruses? Don’t know,.. Please let me know about MMS - that sounded interesting.

[@Aqueous_Anomaly]

@@Justusson Mm it does really suck ha. I can't even remember what that period felt like anymore but pretty sure I was 100% better and had no symptoms anymore. MMS Is chlorine dioxide, it's used as anti malaria medicine but gets a very bad rap as being a snake oil an dangerous etc. But yeah it worked for me back then. It works by killing pathogens and oxygenation of the body. I was taking initially and it was only helping relieve my symptoms somewhat and then one night out of desperation I drunk many doses over the evening and I literally woke up and it was gone. It did take me time to get my muscles and fitness working again. But the underlying cause seemed to be completely gone. in that period I started doing a lot of biking and broke through new levels of fitness I had never achieved before. When I got the Candida again months later I started to feel brain fog again but my muscles still worked like normal. Then I was in a situation where I didn't have access to my meds for that(Candida) and to my horror the CFS came back.

[@Justusson]

@@Aqueous_Anomaly Wow, sounds similar to me many ways. Too bad it’s gotten back too, the symptoms. I know the feeling - it’s hard to remember anything else really, good times and times where it was gone. I looked into MMS a little bit. I think I’ve heard of it before, as snake oil - as you mentioned :) It sounds a bit poisonous 😅 But, was it that time where you drank a lot of it - and nothing more? Or did you continue to drink it afterwards as well? How long did it take for you to notice any difference by normal usage? - I’m intrigued. Thanks for sharing your story. One can only speculate as to why it made you better and why the illness came back after that again. The illness seems so complex,.. Have you tried a large dose after that again, to try and reanimate that moment? Or gotten rid of the Candida again? Or was it that the illness became triggered by the Candida, and resurfaced?

[@Aqueous_Anomaly]

@@Justusson @Chris yeah It was definitely right after I had the multiple doses one night that I became better. I had been taking it at lower doses before that so maybe that weakened whatever it was before I finally killed it or made it become dormant again. The lower dosing prior only helped make me feel less sick and more clear. After that night I didn't take any no, I didn't need to. When I woke up I kind of intuitively knew It was gone also. Yea with mms you feel it quite instantly after ingestion. It's a nice feeling that makes you feel like your blood is getting cleaned out and a nice clear headed feeling. I especially enjoyed taking it before I was sick. But now it does make me feel a little bit nauseas in the liver area. So yea maybe it is a bit poisonous haha. Never had that trouble originally.

[@Aqueous_Anomaly]

Yea I do believe it is some kind if parasite or pathogen possible virus. And the mms knocked it back enough that my immune system got back on top of it. I have tried to take it in high doses again yes a few times but I didn't get it to work maybe I did stick to it long enough partly cos of the nausea. I am kinda thinking about trying it again though.

[@ellat3568]

Thank you so much for doing these videos. I wasn't clear if you were saying there was a link between low bh4 and the itaconate shunt staying on...or are they two separate theories?

[@janetld]

They think they’re connected and they’re trying to figure that out

[@ellat3568]

@@janetld this is so exciting! Thank you! I am ++ for mthfrA1298c which reduces BH4 by 70% and I have had severe M.E for five years initiated by tonsillitis. My sister has recently been diagnosed with long covid and I will encourage her to do a genetic test. I know this might not be the gene you're interested in but curiosity and investigation keep me going. As do these videos! Thank you

[@priyaluce]

Whitney had mentioned years ago and that his entire genome was sequenced and there were absolutely NO pathogens of any kind found, and that the process happening in ME did not involve pathogens. Can you please clarify, since now you are looking for EBV, enteroviruses, nematodes, etc. Thanks so much!

[@Fizzypopization]

It's weird too because someone said that the BH4 deficiency that they had may involve a virus blocking the pathway or a latent infection.

[@hasangenc2922]

Now that you mention it, it makes no sense that there are no pathogens active.

[@snic5805]

Somebody needs to get onto Lady Gaga for funding. She has said many times she wants to help find a cure for Fibromyalgia which she has

[@vanessalele3953]

Yeah, true

[@madbeggar]

Lady Gaga found a cure for fibromyalgia?

[@snic5805]

@@madbeggar No, I meant she has fibromyalgia. The sentence needed punctuation 😂

[@EndersWorlds]

Oooooo good idea!! Need to direct her attention to the open medicine foundation somehow, she wopuld be an amazing high profile advocate and funder opportunity. How though? Don't think sliding into her Dm's would work given how famous she is lol

[@arlenefisher1164]

I once read that CHER has CFS. Maybe she could help??

[@ash0787]

I think the Itaconate thing is the most interesting, its also surprisingly simple that you wonder how it wasn't considered before, I understand that some of the research didn't exist until a few years ago ? the metabolic trap theory on the other hand never really rang true for me because whats to say it wouldn't kill the organism ? both are cool though, but I don't understand what the status of the metabolic trap research is at the moment, I heard it hasn't been confirmed in human cells yet ? but then there was the testing of the drugs with the robot, im confused there.

[@Joan11ify]

Fascinating work!! Am wondering if hidden blood infections such as Mycoplasma, Babesia, Bartonella, Rickettsia, Lyme etc.. are also being tested for as a potential cause or trigger?

[@freakattack6890]

Infections are the cause and drive of this disease.

[@womaninamerica4572]

Invasive how so? What are you needing?and what tests are done to achieve? Can we still turn in hair samples as well?

[@daysofnoah]

HHV-6 CNS Infections

[@lessons9745]

Stealth infections.. Likely different for each person.. I have terrible pots after a hospital acquired ESBL infection and before that I had sledding mishap landed on my rump and set in motion bad degenerative disc disease in L5 S1.. It is possible that there could be a stealth infection there as well. Could also possibly be a problem with the mitochondria... My son has pots as well and other people in my family are borderline pots too. Would folate possibly help with this BH4 issue? Anyhow, I hope you find the bottom line with what ails your son..this illness is horrid. I don't have the bad stomach issues, but more breathing, heart rate, muscles, temp dysregulation, migraines and more. I pray for everyone who suffers from disabling chronic illness.

[@MOJORAPSCALLION]

No way I caught ESBL in my local hospital in Swindon wilts UK it effected my bladder they treated me with vancomycin. I have EDS and Gastroparesis as well as pots and autonomic neuropathy, and peripheral neuropathy I also have ME/cfs since 20 caught mono and have had untreated Lyme Disease from tick bites at that time and in 2009 as well. I also have disc issues as L5/S1 too.

[@lessons9745]

@@MOJORAPSCALLION sounds very similar. I was treated with Meropenem and Ertapenem. Those are B lactam antibiotics which are known to cause mitochondrial dysfunction. I've also read that vancomycin can cause mitochondrial Membrane dysfunction... I didn't know they used it for ESBL UTIs though. Sorry to hear you are quite ill. I wish I could say or do more, but I'm in bed most of the time.

[@roonbooks1418]

Interestingly, my troubles seem to start after,in the 70s, I was put on tetracycline for acne at the age of aprox.15 yrs. Old.i was on tetracycline for 1 1/2 years!!!!! Tetracycline never took my acne away....it was after the tetracycline that I got an "infection" in a motel room. I was drinking well water at that motel.i now have uranium, nickel and antimony in me. What took my acne away was,...I went and layed in the sun (sunbathing)...and in aprox. 2 weeks, my acne completely went away.it was severe on my back. But...my me/cfs came to a head (I guess you could say), in 1993, but things were percolating long before this...from whatever pathogen I got in the motel room in aprox. 1981

[@lessons9745]

@@roonbooks1418 infections and antibiotics are definitely culprit

[@MOJORAPSCALLION]

Ps. I was wondering if HPV viruses are being looked at too?

[@KidCity1985]

A friends daughter developed me/cfs from the vaccine. Thank you both for all your hard work.

[@KidCity1985]

@@kimbuck-2 she got the vaccine, she immediately got me/cfs. Pretty obvious.

[@KidCity1985]

@@kimbuck-2 when you have it you know.

[@winning7grams]

I became severe after being moderate from it.

[@KidCity1985]

@@winning7grams I'm so sorry, I am moderate, I was afraid of that and that's why I didn't vaccinate. I got the virus and luckily it didn't make it worse. I over do it almost daily.

[@winning7grams]

@@KidCity1985 Thanks

[@roonbooks3227]

Yes, my EBV is also ellivated ...but.....i took one single dose of ivermectin and became severely itchy all over. Subsequent doses did nothing.that single dose of iver has done more positive than any other thing ive tried....and ive tried lots. It feels like i have a flu 24/7. I WAS like whiteney, maybe worse.i am better to a degree but not even close to my former self from 1993. I can tell you this is a HORRIFIC illness to go through. I was in so much pain, i was going to take my life at one time. I suppose god is on my side. Imagine being this sick and being told " you are depressed" MY FRIKKIN SKIN WAS GREEN.i think this is a form of sepsis

[@Ninjamom4]

👍👍

[@dragonfly111cute]

Can you test biofilm?

[@arlenefisher1164]

Does anyone study the dead bodies of people with ME/CFS? Is there any need for people to donate their bodies? If so where would one find out to donate?

[@LukeFisherGAS]

Hi again, is there a transcript available for this interview?

[@Gusski84]

I just rewatched with subtitles, really helped.

[@ash0787]

Just realized something - I haven't had 'hiccups' for a long time, I don't believe i've experienced them since developing me/cfs, I wonder if this could be common ? maybe its a clue ?

[@saveyourselves5923]

Does this disease have any similarity to encephalitis lethargica?

[@maxyazhbin826]

I volunteered to help them with their software engineering problems but never heard back, even though they have confirmed they have my resume, if they don't want my help then they could tell me so

[@myhealthobs5290]

I know my bh4 mutations are fairly rare. 23andme

[@katea6720]

i volunteer to give tissue samples - non blood.

[@felixsanchez213]

I develop cfs from chronic anxiety and stress so how is that connected with viruses I feel like yall are looking at the wrong thing. It doesn't have nothing to do with viruses

[@janetld]

Don’t worry, that’s not all he’s looking at. Take a look at the other four videos that we have made about other aspects of his research. This is just a part of it.

[@felixsanchez213]

@@adrenalinejunkie3828 so how did I develop cfs??

[@felixsanchez213]

@@adrenalinejunkie3828 there people out there that I have talked to and said they developed cfs from stress some others from not sleeping and others from severe mental stress

[@felixsanchez213]

@@adrenalinejunkie3828 not everyone has developed cfs from infection that's what people are getting wrong

[@valerystoichkov7429]

@@felixsanchez213 There are 3 triggers for ME: Infections, Poisoning, accidents. Or a combination of these. You don't get Me/Cfs from stress and anxiety.