Is ME/CFS Curable? Ronald W. Davis' Lecture at the 2023 Fatigatio Symposium

  Рет қаралды 37,498

Open Medicine Foundation - OMF

Open Medicine Foundation - OMF

Күн бұрын

Пікірлер: 257
@peacekeepermoe
@peacekeepermoe Жыл бұрын
I pray to God that Ron Davis has a long healthy life, so he can see his son Whitney cured of this terrible disease. Thank you to all the people working on this and all the sponsors and donors. God bless you all!
@brobinson8614
@brobinson8614 Жыл бұрын
I hope he stops eating animal proteins as they cause inflammation of the endothelial cells lining the blood vessels, causing plaques to build up, i.e. cardiovascular disease
@Truerealism747
@Truerealism747 Жыл бұрын
​@@brobinson8614well I no I began and it's surely made her worse natural organic protein from beef keeps me going
@Truerealism747
@Truerealism747 Жыл бұрын
​@@brobinson8614to be truthful yes it maybe does that but my grea uncle 94 best way to die hardening of arteries in old age
@seanvogel8067
@seanvogel8067 Жыл бұрын
@@brobinson8614, no….carbs do that.
@burgermind802
@burgermind802 11 ай бұрын
@brobinson8614 hijacking a comment for your own pet issue is scummy
@Axle-F
@Axle-F Жыл бұрын
Ron is a living legend and it’s shameful that the NIH hasn’t invested more in his crucial work on ME/CFS.
@tanyabrown9839
@tanyabrown9839 Жыл бұрын
I had severe ME/CFS and was cured by trying hard not to do anything which crashed me (to do this I had to rely on others for a lot of help), slowly though I got better. It probably took me 4 to 5 years (maybe 6) until I was in full remission and during that fully cured time I was out running marathons, I did a 100km trail blazer marathon and lasted 90km before I had to stop due to a groin injury and hypothermia. I did that without a ME/CFS crash so was in full remission from this illness. I was cured until I caught what was a common cold going around after 3 years of complete wellness and that to my shock crashed me back into ME/CFS so now I'm have to rely on others for hep again and use support workers to push my wheelchair and help me with so much else. Im in Sth Australia and sadly now have had ME/CFS almost half of my life.
@ThaisCanto
@ThaisCanto Жыл бұрын
I hope you recover again. ❤
@marymastandrea2640
@marymastandrea2640 Жыл бұрын
How were u cured????? Diet ,,,rest. Explain
@wzupppp
@wzupppp Жыл бұрын
Please tell us more about your first recovery. What did you exactly do? I had the same in 2013 due to antibiotic allergy. I recovered after 5 months. I rested a lot and ate nutrient dense foods
@nikkismith8750
@nikkismith8750 Жыл бұрын
I had a very similar experience: severe ME/CFS for 3 years then gradually recovered (without any specific treatment/plan/action). Then enjoyed 15 very active years of full health, including running ultramarathons. Then a virus triggered something? and I've been stuck with moderate ME/CFS for another 8 years now, with no signs of improvement. My *guess* is that the lucky few who recover from ME/CFS do so entirely spontaneously, but often attribute their recovery to 'something' such as a unique supplement, or activity, or expensive treatment. More research will eventually give us the actual answer!
@iridiumho
@iridiumho Жыл бұрын
Thanks for sharing, so what I understood from your experience is we can go into remission and return to normal life, but it could always come back if we get another infection. Did you first have it as a teenager or as an adult?
@theanomaloushousewife886
@theanomaloushousewife886 Жыл бұрын
If avoiding crashes is all there is to getting cured, the solution is simple for chronic fatigue and something the entire world around us never wants to allow - - that all important REST, not working beyond your limits, *listening to your body's cues*. We aren't allowed these freedoms. We must always produce, you know? "Keep going. Everybody is tired." That's what you hear when you try to communicate that you just can't keep up the pace demanded of us all. You literally work until you collapse, day after day after day. It honestly, makes for a truly miserable life. I'm thrilled medicine is finally getting to the bottom of this. You can't tell people that the cells in your body just don't make energy. They don't get it. We should all just be able to will ourselves over that physiological hurdle because 'mind over matter'. If you can't see you, you won't believe it mentality. Magical thinkers are everywhere in your little world of hard physical limits.
@laurabone3228
@laurabone3228 Жыл бұрын
Agree. I cringe when people tell me my problem is watching medical videos or even talking about my disease, because it cements it into my reality. If only I understood that I am creating my own reality and should just leave all this sickness stuff behind me. Toxic positivity and magical thinking.
@melaniavxzq2983
@melaniavxzq2983 Жыл бұрын
I completely agree colleagues, it is sad that I visited the hematologist because my anemias have returned and I wonder if I read about chronic fatigue on the Internet or a doctor told me 🤷 luckily I am diagnosed by doctors but it seems sad to me, thank you to all these people who understand that it is not a simple fatigue and help us as the OMF team🙏
@val144sr
@val144sr Жыл бұрын
​@@melaniavxzq2983You can try drinking buy batches of nettle leaf tea ( not in teabags) every day, it restored my iron deficiency.
@winniecash1654
@winniecash1654 11 ай бұрын
You hit the nail on the head. ❤
@nestechen
@nestechen 10 ай бұрын
@@laurabone3228It is very true however, that excessive obsession over your illness makes it worse. You have to believe that you will be healthy.
@carojneville143
@carojneville143 Жыл бұрын
I have Severe ME/CFS & was just able to read a book for the first time in over ten years in book form ...it was the puzzler solver... God Bless the Entire Dafoe/ Davis Family ❤❤❤ ... Wait'in on Superman 🎶🎵
@MsJayjay70
@MsJayjay70 7 күн бұрын
Please get the cure soon! I’ve been sick for 20 years. It’s only due to covid that people finaly are taking this serious. I used to be very active. After my second child I became very ill and never recovered. They all thought it was a mental thing, but this ilness is taking whole familys down. I so much want to do thinga for and with my family ❤
@SyKnife
@SyKnife Жыл бұрын
Thank you for giving me hope! I’ve been sick for nearly 30 years. I was functioning but disabled when I got COVID and spent 6 months bedridden. Then I woke up one day and my brain was clear. That was six weeks ago and I’ve been regaining my functioning since. So I have experienced both the ongoing illness and the spontaneous recovery(just from the COVID part). I’m working to get back to my previous disabled level. I’ve noticed that people who get sick and have people to take care of them seem to get all better in two years. Your theory makes so much sense! ❤
@andrewgifford7740
@andrewgifford7740 Жыл бұрын
Thanks Ron - and all involved at OMF and its research partners - for all you're doing, I really hope this line of research bears fruit!
@Angel-rp4nu
@Angel-rp4nu Жыл бұрын
Dear Ron and OMF Team, thank you for everything you are doing, tirelessly... we all really appreciate your hard work 🙏. God bless you and strength to persevere to all, especially courageous patients. Let's keep going and stay strong in spirit🦋
@boogiebegs
@boogiebegs Жыл бұрын
this is incredibly encouraging... thank you so much Dr Davis for all your wonderful work...
@Tanya-cy9dx
@Tanya-cy9dx Жыл бұрын
Thank you for your dedication in researching M.E/CFS Your research findings are comforting. I live in hope for a cure 🙏🏻
@LR-px9ms
@LR-px9ms Жыл бұрын
Pr. Ron Davis - you are my hero! God bless you and your family. I have so much hope now!
@kjetil_
@kjetil_ Жыл бұрын
Thanks to the OMF-team, keep up the good work. Updates like these are greatly appreciated.
@MsDemonBunny
@MsDemonBunny 8 ай бұрын
Someone actually taking ME/CFS seriously and not trying to sell the backwards idea that we're just lazy or depressed or attention seeking; it's a legit illness with real triggers and an illness can be at least treated if not cured. The possibility of a cure though is amazing. But first we require more people in the medical community to understand it's a real and legitimate illness. Bless this gentleman and others working on figuring out what this illness is and what to do about it.
@ashleyandrews3105
@ashleyandrews3105 Жыл бұрын
Thank you for all you do for our population…..hope is so important when you’re not believed
@Katy-sh3ru
@Katy-sh3ru 2 ай бұрын
Endless blessings on you and all the researchers working on this ❤🙏
@oliviajenkinson7281
@oliviajenkinson7281 8 ай бұрын
Thank you so much for trying to help us!!! It means the world ❤
@crystalwebb5725
@crystalwebb5725 Жыл бұрын
I definitely think you are onto something, it would help millions of people all around the world. Super exciting!
@elizabethferguson1994
@elizabethferguson1994 Жыл бұрын
Thank you so much. I've been so excited by the itaconate shunt hypothesis. But the previous videos on it didn't mention the potential reactivation of the innate immune system through crashes which is what I've been waiting to hear. It coincides very much with my experience of the disease which is why I try to avoid crashes at all costs - this has worked very well for me and I've seen great results by doing this. I also knew that if I fell into Very Severe ME, the crashes would be impossible to avoid and would perpetuate the disease keeping me trapped in it ( I was very close to it at one point). So, hearing this so clearly explained is wonderful. The best news. It gives me great hope. Thank you, thank you, thank you xx
@Nottygdrasil
@Nottygdrasil Жыл бұрын
how did you avoid crashes ?
@me-cfs-strategiesforhealing
@me-cfs-strategiesforhealing Жыл бұрын
A true hero.
@anaserrot6620
@anaserrot6620 Жыл бұрын
Mis oraciones para todos los enfermos e investigadores. Especialmente para el doctor Davis y su esposa e hijo. Dios los bendiga abundantemente. Desde Argentina 😚😚😚😚
@mc-xf7uf
@mc-xf7uf Жыл бұрын
Thank you Ron and all involved in this research. Your hard work is greatly appreciated.
@rivkaclifford427
@rivkaclifford427 4 ай бұрын
Your work is so appreciated, Dr Davis. I've followed Whitney for years. I also have ME, and had to stop working due to it, in my professioanl prime at 52 years of age. Like many with ME I am not living on disability and struggle to be able to get even the basic supps to help. Thank you for all you do for the ME community.
@2hff728
@2hff728 Жыл бұрын
Thanks Ron + OMF team. Let's solve this!
@ulalaFrugilega
@ulalaFrugilega 2 ай бұрын
This is the kind of science communication I like. Not to mention the slight moment in with which his "curable, yes" lifted a mountain off my back...
@lme9743
@lme9743 Жыл бұрын
It's encouraging to hear many get to a better place in their lives. Thank you for everything you and your team are doing. Prayers going out for your son.
@helenstrandell5455
@helenstrandell5455 Жыл бұрын
Thank you so much for your efforts! On sunday I have been ill in this sickness for 10 years and that is most of my childrens childhood. This give me hope for the future! Thank you🙏🏼💙
@Truerealism747
@Truerealism747 Жыл бұрын
26 years for me but more fybromyalgia now which is symptoms in of CFS are you hypermobile it's linked to asperger's ADHD Dr lenz
@casscanine
@casscanine 3 ай бұрын
Thank you Dr Davis for everything you do for the ME community, giving us such desperately needed hope when it feels like we've been abandoned by most of the medical profession. Seeing this scientific confirmation of why it's so important to avoid PEM is really encouraging and validating, a big step forward in being taken seriously by those around me. My hero ❤️
@susanphoenix74
@susanphoenix74 Жыл бұрын
Thank you very much for your dedication. Things are beginning to show promise thanks to you and your colleagues. The thought of a real cure is exhilarating.
@Anchor7
@Anchor7 Жыл бұрын
Thank God we have you and your team trying to figure this out
@martinamartina5919
@martinamartina5919 Жыл бұрын
But, can we get better and be mild when we pushed too much and ended up severe? I didnt know thats cfs and everybody was saying you have to push through 🤷🏼‍♀️
@jennycolenbrander131
@jennycolenbrander131 27 күн бұрын
I had an almost miraculous "revival" from the near death experience of having CFS . I had to find my own way to an MTHFR test...then find out which doctors did the test.... heamatologists use it to manage methotrexate dosage.....managed to get an appointment...... barely walked into the offices....was prescribed Rescuvolin just to try.... I think it's 30mg of folate... brain cleared in one day.... leg pain receded from 2nd day. Trying to balance with "normal" vitamins as the Rescuvolin was too much..... bruising etc from too high doses. Struggling still but nowhere near as bad as I was. Hope this helps someone ❤
@barringtonsmythe3464
@barringtonsmythe3464 Жыл бұрын
Thank you Doctor. More avenues to explore in a hope of being cured 😊
@deborahkate1849
@deborahkate1849 Жыл бұрын
Thank you so much for this excellent information. Blessings for you and your family and your beloved, precious son.
@TheValiantZero
@TheValiantZero Жыл бұрын
Thank you for all you are doing to research CFS treatment!
@sigrid3553
@sigrid3553 6 ай бұрын
Thank you so much for encouraging news. Blessings from Norway.
@spinstersuccess6941
@spinstersuccess6941 Жыл бұрын
Thank you for all your work. I was diagnosed in 2016 after years of drs not believing my symptoms.
@lmnts556
@lmnts556 Жыл бұрын
It's strange, I keep seeing people getting sick with ME around 2015-2016. I wonder if something happened around that year. Very strange.
@Truerealism747
@Truerealism747 Жыл бұрын
​@@lmnts556stress maybe but it would if been there before any hypomobility?
@maya-w3k5v
@maya-w3k5v 3 ай бұрын
I think coxackie
@Amy-rb23
@Amy-rb23 24 күн бұрын
​@@lmnts556I got sick and then got ME in 2017. Definitely seems like a lot of people were around that time too.
@DanielleLegacy
@DanielleLegacy Жыл бұрын
Great work! Thanks for the info. Praying for your research team. These videos give me hope. 🙏🏼🤍
@FatigatioeV
@FatigatioeV Жыл бұрын
Thank you very much for your participation and your valuable lecture, Ronald Davis. It was a pleasure to have you as part of the symposium. Best regards, Fatigatio e.V. - Bundesverband ME/CFS
@MB-tt9gb
@MB-tt9gb Жыл бұрын
Thank you again for all the work that you and many more are doing!! 🙏🙏🙏🙏
@KidCity1985
@KidCity1985 Жыл бұрын
Good morning Ron. I started Abilify today, wish me luck.
@spinstersuccess6941
@spinstersuccess6941 Жыл бұрын
Hi, did you read that abilify may help you? I also have it
@KidCity1985
@KidCity1985 Жыл бұрын
@@spinstersuccess6941 I've heard several researchers say people are having good luck. I believe Ron Davis was one. So far, the best luck I've had was with Savella, it worked great for 3 years. 27 years here. Best of luck.
@KidCity1985
@KidCity1985 Жыл бұрын
That's a no, made my muscles hurt horribly and made me emotional.
@olivertruswell
@olivertruswell Жыл бұрын
🙏🙏🙏🙏 thank you for all your efforts. When I saw this video I was so excited and it didn't disappoint. I wish you luck with exploring this further and praying it unlocks this mystery
@saramonaghan6262
@saramonaghan6262 Жыл бұрын
Thank you I find your updates the best in the research forums and have hope when reading 😊❤
@vb6345
@vb6345 Жыл бұрын
Thank you, thank you, thank you, Dr. Davis, for ALL you do to help those with this disease. ❤ Our loved ones are in a better place and actually have some hope knowing that you’re focused on this.
@btudrus
@btudrus Жыл бұрын
JAK-STAT path is tightly connected to the insulin pathway (PI3K/AKT). which means that insulin-resistance/hyperinsulinaemia will activate JAK-STAT and VICE VERSA! targetting insulin resistance (fasting / ketogenic diet) is the way to go!
@melaniavxzq2983
@melaniavxzq2983 Жыл бұрын
I don't know if this happens to you, but if I fast I go to the ground with a lot of dizziness and fainting, rather it gives me hypoglycemia, at least in my case. Have you tried that diet and has it worked well for you? Thank you very much 🤗
@btudrus
@btudrus Жыл бұрын
@@melaniavxzq2983 Yes, I eat ketogenic and plant-free and I do occasionally fasting for several days to weeks. Sometimes I do time-restricted-eating (when eanting, of course). If you go hypoglyceamic while fasting it is a sign that your insulin is high / you are insulin resistent. You need to start slowly. Also, you need to watch your electrolytes...
@oliverbird6914
@oliverbird6914 5 ай бұрын
Would you say it's significantly improved you. Why don't all diabetics feel like us. I'm not disputing what you're saying. Just question s​@@btudrus
@jj-87ro
@jj-87ro Жыл бұрын
Those of us who are severe and bedbound are so desperate for a cure. Today, I can barely find the energy to breathe and cannot listen to this video 😢 Can someone please sum up?
@sevenshadesofsmooth
@sevenshadesofsmooth Жыл бұрын
The short version of the video says that under normal circumstances, your body has a cycle that produced energy via an amino acid called ATP. After pretty much a bunch of different traumas/illnesses the body can change this cycle due to a cascade of effects that makes your body run (poorly) and no longer uses ATP correctly. He discussed instances where people have recovered due to the body switching back to the normal ATP cycle, but these are not results from studies, only anecdotal evidence. At this stage, they are searching for already approved drugs that may prevent the body from switching into the altenative cycle and allowing people to avoid the fatigue/energy loss. Hope that helps you.
@briannacooper2628
@briannacooper2628 Жыл бұрын
❤ Thank you for the updates. They give me hope.
@KrystalGault
@KrystalGault Жыл бұрын
The more I learn the more I realise we also need to be looking at Mast Cell Activation. This seems to be so important but so missed.
@cristinamiro7
@cristinamiro7 3 ай бұрын
Indeed. Mast Cells are one of my problems, since I cannot eat most of the foods and I react to smells very strongly.
@vvdv3444
@vvdv3444 Жыл бұрын
Hi Ron I recovered from many years of severe CFS. I could hardly walk around the house. Now I can do intense exercises and mountain hikes no issues.
@MB-tt9gb
@MB-tt9gb Жыл бұрын
How did you do it?🙏🙏🙏
@MarcosSanchezMuriel
@MarcosSanchezMuriel Жыл бұрын
Was it spontaneous?
@AlbaLynxQueen
@AlbaLynxQueen Жыл бұрын
What helped you?
@seanwallace857
@seanwallace857 Жыл бұрын
How did you recover?
@crystalwebb5725
@crystalwebb5725 Жыл бұрын
Yes, how.... please
@youMEtubeUK
@youMEtubeUK 4 ай бұрын
00:06 ME/CFS is curable, according to Ronald W. Davis 02:02 ME/CFS onset linked to innate immunity activation 03:29 Activation of the itaconate pathway decreases ATP production 04:44 Itaconate shunt robs the ability to make ATP, causing fatigue. 06:08 Evidence of itaconate shunt activation in ME/CFS patients 07:42 ME/CFS severity is determined by the number of cells involved, leading to energy depletion and crashes. 08:58 Some ME/CFS patients have experienced spontaneous cure. 10:16 Exploring JAK-STAT signaling pathway Inhibitors and CAD production blocking for potential ME/CFS treatment.
@afterthoughts423
@afterthoughts423 Жыл бұрын
I've been suffering and getting worse for 27 years. I got shingles at 9yrs old then hit with unexplainable pain suddenly at 10yrs old. They first thought it was JRA, then leukemia, Lyme, mixed connective tissue disorder, lupus, MS, and finall back to the unknown. Doctors have all, but given up. I have all the symptoms for ME/CFS. Where can I go or who can I contact to be tested?? It's ruined my work life and getting harder to rebound from. I'm only 38 and feel 90 daily.
@semracalik3040
@semracalik3040 2 ай бұрын
Thank you
@ericahayes7416
@ericahayes7416 Жыл бұрын
Thank you!!!!
@12atp
@12atp 6 ай бұрын
I have avoided crashes for years at a time simply because ME/CFS is so isolating and limiting. Avoiding crashes has never improved or cured my condition. Going on 21 years with ME/CFS.
@melaniavxzq2983
@melaniavxzq2983 Жыл бұрын
Is that why we feel improvement when supplementing with sugars like D-ribose? My question would be if in our disease it is easier to obtain ATP from sugars or carbohydrates than from fatty acids and I would also like to ask if a cpt2 or vlcadd style diet low in fat and rich in sugars could help us? Thank you so much for help us 🙏🌹
@jmer9126
@jmer9126 Жыл бұрын
Thank you 🙏 ❤
@morriganwitch
@morriganwitch Жыл бұрын
Long Covid since 2019 the fatigue is just the worst xxx
@frid123
@frid123 Жыл бұрын
Ask your MD about this... pubmed.ncbi.nlm.nih.gov/33807280/ It seems to better long covid patients, at least... I hope? 🌸
@-TheRealThing-
@-TheRealThing- Жыл бұрын
What are you talking about? Covid only started in 2020.
@carpediemcotidiem
@carpediemcotidiem Жыл бұрын
@@-TheRealThing- It's called COVID-19 because it was discovered in 2019
@abstuli
@abstuli Жыл бұрын
There are several mast cell diseases that can have the same symptoms, triggers and PEM as Long-COVID and ME/CFS. Associated diagnoses are also the same as in ME/CFS. Mast cell diseases can be treated with medication. These diseases are unknown to almost all doctors. Mast cell diseases have genetic causes. • Hereditary alpha-tryptasemia syndrome (HαT) common in 5% of the population discovered in 2016. Most have not become ill from the syndrome. • Mast Cell Activation Syndrome (MCAS) assumed very common 17% to 20% of the population. Given its name in 2007, most people have not fallen ill from the syndrome. • Systemic mastocytosis (SM) very rare. Mast Cell Activation Syndrome (MCAS) is linked to Long covid. Scientific articles at NCBI. • Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome • Immunological dysfunction and mast cell activation syndrome in chronic COVID • Mast cell activation syndrome and the link with chronic COVID • Mast cell activation symptoms are prevalent in Long-COVID • Mast cell activation is associated with post-acute COVID-19 syndrome • Mast cell activation may explain many cases of chemical intolerance • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • The role of mast cells in migraine pathophysiology • The role of human mast cells in allergy and asthma • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers • Mast Cell Activation Syndrome: More than “just allergies”
@markstaud
@markstaud Жыл бұрын
This could be the cure for ME/CFS. ATP is also a major problem in Long COVID. Please keep up the great work Doctor Davis and your Amazing Team
@Beth_82
@Beth_82 3 ай бұрын
This was a year ago, are there any updates?
@lenagx222
@lenagx222 Жыл бұрын
Thank you so much Dr. Davis for not giving up!!! My son who is also has a severe ME/CFS for over 6 years, he bedridden and uses feeding tube for nutrition and fluids. We are trying everything under the sun for his cure. I was just wondering if maltase enzyme could help to process the glucose? I was trying to buy it but can't find it anywhere.
@abstuli
@abstuli Жыл бұрын
ME/CFS can be so many things. There are several mast cell diseases that can have the same symptoms, triggers and PEM as ME/CFS. Associated diagnoses are also the same as in ME/CFS. Mast cell diseases can be treated with medication. These diseases are unknown to almost all doctors. Mast cell diseases have genetic causes. • Hereditary alpha-tryptasemia syndrome (HαT) common in 5% of the population discovered in 2016. Most have not become ill from the syndrome. • Mast Cell Activation Syndrome (MCAS) assumed very common 17% to 20% of the population. Given its name in 2007, most people have not fallen ill from the syndrome. • Systemic mastocytosis (SM) very rare. Mast Cell Activation Syndrome (MCAS) is linked to Long covid. Scientific articles at NCBI. • Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome • Immunological dysfunction and mast cell activation syndrome in chronic COVID • Mast cell activation syndrome and the link with chronic COVID • Mast cell activation symptoms are prevalent in Long-COVID • Mast cell activation is associated with post-acute COVID-19 syndrome • Mast cell activation may explain many cases of chemical intolerance • The Emerging Role of Mast Cells in Irritable Bowel Syndrome • Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome • Mast Cell Activation Disorder and Postural Orthostatic Tachycardia Syndrome: A Clinical Association • The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome • Mast cell-mediated neuroinflammation may have a role in attention deficit hyperactivity disorder (ADHD) • The role of mast cells in migraine pathophysiology • The role of human mast cells in allergy and asthma • Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases • Successful Treatment of a Patient With Severe COVID-19 Using an Integrated Approach Addressing Mast Cells and Their Mediators • MCAS: what is Mast Cell Activation Syndrome? - Online interview • The Role of MCAS in Long Covid With World Leading Specialist Dr Lawrence Afrin • Here's How You Treat Long Covid | Lessons From MCAS - Dr Tina Peers • Mast Cell Activation Syndrome: More than “just allergies”
@BernardoVasconcelos1
@BernardoVasconcelos1 Жыл бұрын
This give me hope that recovery is still possible, even after nearly a decade of this.
@steveozone4910
@steveozone4910 Жыл бұрын
Hi Ron. I'm not sure if you'll get a chance to read this or not. I was diagnosed with M.E in 2010, and I've had multiple kidney operations since that time. I noticed that my symptoms are always better for a few days after receiving Saline ( ringers solution) drip. I'm not sure if there's anything to it, but thought I'd pass on the info anyway. Maybe it's something you can test with your son? Keep up the good work. We're all routing for you! I'm currently testing Cetirizine to see if it has anything to do with the NF-kB pathway.
@papercup2517
@papercup2517 Жыл бұрын
As I understand it, as a patient not a doctor, taking salty water every day helps with the orthostatic intolerance (which includes several variations of faintness while upright) by tightening blood vessels and thus raising blood pressure. Research has shown most people with ME have some degree of OI, even if they don't actually experience symptoms.. Cort Johnson has info on this in his Health Rising blog. I don't know what if any the negative effects of this regular salt water intake might be long term, for example on kidneys.. I haven't seen any research addressing any this, and the doctors I've had access to know nothing about it, and unfortunately can't be bothered to find out.. I take about a teaspoonful of salt in a large glass of water daily, and drink plenty more fluids through out the day. OI always worsens if I stop for a day or two. Hope this helps in some way. :-)
@annalisette5897
@annalisette5897 Жыл бұрын
Good advice. I am a journalist researcher. All of us reading, sharing and giving sources, I believe will aid research. If those with the degrees and abilities listen to us!@@papercup2517
@kimwarburton8490
@kimwarburton8490 Жыл бұрын
I take 1.5tspoons of doctor sarah myhills 'sunshine salt' in 3ltrs o water daily, shes a uk mecfs expert n has hundreds of recovered mecfs clients. I used to follow her protocol religiously, but find i no longer need to as im well on my way. Currently rebuilding fitness, driving, studying biology wiv view to changing career n being self employed, 🤞starting the course spring '24
@Truerealism747
@Truerealism747 Жыл бұрын
​@@kimwarburton8490did you have much pain are you hypermobile
@kimwarburton8490
@kimwarburton8490 Жыл бұрын
@@Truerealism747 i have hypermobile joints if thats what ur asking. I was in chronic pain in my body for years before i had MECFS, but id ignored it, accepted it 10-15yrs. MECFS brought about acute audio and light sensitivity such that birdsong made me cry with pain and i lived in the dark, alone. I also had intense headaches/migraines that would last for weeks/months non-stop. I also had such severe brainfog i could not communicate, nor could i understand language for most of a year and when it got better, it would take extreame effort, worse than a foreign language and id often faint from the exertion
@popokatapetl6995
@popokatapetl6995 10 ай бұрын
So what is the treatment
@ashleylala4293
@ashleylala4293 Жыл бұрын
I notice that I have more energy when I don’t eat. Obviously, this is not sustainable because I’m a thin person. But it does make me wonder what the hell they’ve done to the food with all the factory farming and whatnot. Glutathione IVs have also been helpful for me, particularly with the migraines.
@wzupppp
@wzupppp Жыл бұрын
Covid triggered it for me
@karenschindler2871
@karenschindler2871 Жыл бұрын
I’ve had covid twice and for some strange reason my ME/CFS symptoms improve at the beginning of the covid infection.
@val144sr
@val144sr Жыл бұрын
I also get mini remission for a day when I spike a fever from flu, food poisoning, etc. It's the immune system switching.
@garystaudinger9034
@garystaudinger9034 Жыл бұрын
@@val144sr Your immune system stop fighting you and starts fighting the foreign infection
@val144sr
@val144sr Жыл бұрын
@garystaudinger9034 Probably! But I can't prove that I have autoimmunity because all my autoantibodies are fine. I also have chronic EBV and Shingles so I think this is what causes the autoimmunity - a chronic infection.
@rhyothemisprinceps1617
@rhyothemisprinceps1617 Жыл бұрын
There was an article from 2010 that reported suppression of both adaptive and innate immune responses following spinal cord injury, Held et al., "Impaired immune responses following spinal cord injury lead to reduced ability to control viral infection". I was wondering if the immunosuppression leads to opportunistic viral infection, which then causes ME/CFS in some. Also wondering if people who have recent spinal cord injury should be advised that they could be at increased risk from infections, especially considering current circumstances.
@RubberTag
@RubberTag Жыл бұрын
Can we help with the studies some how? We who are sick. I would gladly be used to get information about CFS
@plantagominor722
@plantagominor722 Жыл бұрын
Do we know what the function of the Itaconate pathway is in healthy people?
@bwhatever60
@bwhatever60 Жыл бұрын
I have ME/CFS and I'm in so much pain all the time. Also type 2 diabetes, and chronic acute sleep apnea. Not terribly overweight. But the ME/CFS started first in this whole mess. With all treatments for co existing other condition I still have chronic awful pain. I wish there was something to stop this.
@sneakypress
@sneakypress Жыл бұрын
What kind of pain, exactly, are you experiencing, and where is the pain located ? We have noticed that there is more pain after eating certain foods. Are you gluten free ? If you are not, we suggest you begin by avoiding all gluten-containing foods.
@randomname4726
@randomname4726 Жыл бұрын
I have pain too but I also have Ehlers Danlos Syndrome. I take tramadol and gabapentin and it works really well. I do still get that whole body and head ache like when you have the flu.
@randomname4726
@randomname4726 Жыл бұрын
Ehlers Danlos can cause sleep apnea too, could be something to investigate. I really want to loose weight but it's so hard when sick in bed and food is comfort.
@m.c.o.3068
@m.c.o.3068 Жыл бұрын
Thank you to OMF for the molecular biochemistry updates applied to making sense of post-viral chronic health and wellbeing challenges. Real time considerations, and post-viral experience: For the adult patient, everything - social expectations, anticipated challenges - is the same; however the patient's ability to address and meet those realities half-way is altered. Awareness, lacking alertness - a diffuse versus discrete neurocognitive state. Evolutionary time considerations, and post-viral experience: Evolution may have incidentally generated this immune mediated altered state... Afflicted early humans may have self-quarantined away from the group, partly because of a reduced ability to meet everyday realities half-way. The larger group's genetic character would have moved into the future - thanks to this self-quarantine behavior, provoked by multisystem immune reactions - long before germ theory. Beyond that, a diffuse character of mind allows a kind of sensory and information overload. Some of the self quarantined early humans may have survived; because they had enough processing power to make positive sense of the cognitive overload. These, (self-quarantined), individuals, able to cope and survive, would have become a part of human genetic evolution as well.
@MECFSAwareness
@MECFSAwareness Жыл бұрын
What a legend.
@ash0787
@ash0787 Жыл бұрын
Theres been some other research coming out this year e.g. Prusty and WASF3 protein, would be interested to know what Dr Davis thinks about those things. I got surprising improvements after being stung by a wasp a couple months ago, prior to that I was in a tough situation, with onset of multiple chemical sensitivity and reactions to many foods, also a big increase in mold hypersensitivity. I think I have issues with stomach toxins particularly H2S but I don't know the root cause, for years I had CFS but none of these issues and no periods of extreme stomach bloating reminiscent of SIBO.
@larklajonlizerman846
@larklajonlizerman846 Жыл бұрын
Hello Ron, please take a look at the mechanisms bat viruses use for viral reactivation! Short: During flight the mitochondrial stress is so high, innate immunity shuts down to avoid inflammation/NLRP3 and Autoimmunity e.g. Cardiolipin, leading to massive viral reproduction . After a few hours after restoring metabolism the virus reproduction is stopped. In humans, this process leads to crashes
@karenschindler2871
@karenschindler2871 Жыл бұрын
How are people healing from mind-body work? I’d like to know Dr. Davis’ opinión on that and how it relates to his research.
@cpt_kirkwood
@cpt_kirkwood Жыл бұрын
And with covid more retriggering so many peoples ME, what are people supposed to do? Is so contagious. It’s scary. No one send to care about preventing infection and what will happen to people with ME? If we invested in this research early on, we likely wouldn’t have had to deal with long covid as a phenomenon. Thanks for doing this work. Can you provide a timeline for song updates? I have a vaccine injury that caused what seems to be ME and I’m afraid if catching ANY infection at this point. I do not want to be bedbound again. I feel like I’m just waiting for the day when it triggers again after some infection or traumatic event and the clock will be reset on any incremental progress. Laying in bed so fatigued as we speak. This gave me some hope but I worry I won’t hear about any updates😢 I’ve only been dealing with this for a few years but I’ve seen some people trapped with ME for decades. It’s really one of the most debilitating things I can imagine honestly. Didn’t know childbirth can trigger it too. New fear unlocked lol
@randomname4726
@randomname4726 Жыл бұрын
Yes I got sick when pregnant with my third child and it just got worse for the past 10 years. If we ever get better I think a quiet, slow paced life would be best for us.
@fintux
@fintux Ай бұрын
ME seems to be a puzzle of a thousands of pieces with the reference picture missing. I have been wondering what is the role of dysbiosis and fungal overgrowth (especially candida albicaans). Candida itself causes many overlapping symptoms and can derail the immune system as well as cause dysbiosis. And candida overgrowth can come as a result of an infection. Perhaps also a surgery, physical trauma and childbirth can introduce candida inside tissue, where it can start wrecking havoc. It also would explain why sugar, glucose, alcohol and excess amounts of red meat have detrimental effect. It would also explain low serotonin levels. However, I still suspect that if it significant in ME, then maybe it also is still just a piece in the puzzle, and not the root cause. Otherwise, treating ME could be done with antifungals (one thing with antifungals, however, is that they can cause candida die-off symptoms, which could feel as worsening of the sickness). Well just my thoughts, but I have not seen too many studies on this topic, just some speculations from the 90s.
@McRusen
@McRusen Жыл бұрын
This might explain why some smaller studies in the past saw improvements (no cures!) with interventions that help cell metabolism. Enzymes, co-enzymes, amino acids, high-dose vitamins, that stuff. It might "just" help the body to provide more ATP. At first glance, it doesn't really seem to explain stuff like orthostatic intolerance or sympathetic overactivity, so maybe there are different subsets of people (that is to say that "CFS" might refer to a few different yet-unknown diseases). However, strictly avoiding crashes and helping your body as much as possible (good* nutrition, sleep and mental health) definitely helps to at least establish a baseline. * relative fof everyone
@yourprincecharming
@yourprincecharming 12 күн бұрын
Mitochondria are affected in brain due to chronic inflammation, this leads to CFS/ME and Adrenal fatigue. HPA axis dysfunction is closest diagnostic name for the symptoms.
@craigsawyer6453
@craigsawyer6453 Жыл бұрын
Really working on not crashing since spring of 2023... not much of an improvement yet. Perhaps by next spring things will get better?
@frid123
@frid123 Жыл бұрын
🙏♥️🙏
@kyriestrange
@kyriestrange Жыл бұрын
Does this mean if we take ATP supplements it could help?
@SocialjusticeFeb21strong
@SocialjusticeFeb21strong 9 ай бұрын
Thank you so very much! Does this include fibromyalgia?
@eddie8489
@eddie8489 Жыл бұрын
Thanks for all your work kind sir. I think it’s important to note that it’s also highly correlated with connective tissues disorders and POTS and can arise in anyone without any identifiable trigger too. Correct me if I’m wrong but any disease process that makes the body reach aerobic threshold too quickly is likely to cause an ME CFS like condition. I think the disease may be more cardiovascularly related than we think. Also likely most if not all patients have a completely different root cause which would explain some being cure and some not as well certain medications working for some but not others
@frid123
@frid123 Жыл бұрын
There are different sub groups of ME, and there will probably not be one medicine, or test, that fits all. See dr David Systroms research on heart/lung function, PEM, and small-fiber-neuralgy. Systrom is also in the OMF group. 😊
@eddie8489
@eddie8489 Жыл бұрын
@@frid123 I know it just feels like this research is only focusing on viral aspect when there such strong research supporting the me/cfs/whole umbrella is a hemodynamic issue www.ncbi.nlm.nih.gov/pmc/articles/PMC8505270/
@mikecarey1990
@mikecarey1990 Жыл бұрын
As an energy healer with 45 yrs. exp., I have had 100% success in getting rid of chronic fatigue with my clients, and also with my daughter who had it for 8 years before I learned about cellular memory and how to tap into it. Then, I found the cause and was able to cure it in 2 days.
@Mango58900
@Mango58900 Жыл бұрын
Could I get in touch with you to see if you could help me?
@popokatapetl6995
@popokatapetl6995 10 ай бұрын
He should write I'd down for everyone
@ashleylala4293
@ashleylala4293 Жыл бұрын
We are unwell because our environment is unwell. We are living in a toxic soup and at some point it needs to be addressed. There are way too many toxins in the environment. They may not be the root cause in all cases but it’s certainly a factor to consider. The lab report for most municipal water facilities is downright horrific.
@stephaniekays6517
@stephaniekays6517 2 ай бұрын
I got MECFS & FM from highly toxic chemicals that crossed the placenta that my parents worked with when i was a foetus & 2 other neuro conditions too...i had also got hEDS from my mother & MCAS from my father.
@patriciamaclennan5634
@patriciamaclennan5634 Жыл бұрын
Has anyone looked at the possibility that the mitochondria gene might be compromised? They talk about mitochondria disease but has there been any link to CFS being activated?
@RoaringJaguar
@RoaringJaguar Жыл бұрын
@asmrquran4374
@asmrquran4374 3 ай бұрын
how to cure it ????
@heatherhartman6474
@heatherhartman6474 Жыл бұрын
Low dose psilocybin mushroom therapy may greatly help these patients as well. 🙏 Praying for all those affected. ❤️
@boogiebegs
@boogiebegs Жыл бұрын
Q: Regarding Long Covid, wouldn't viral persistance make blocking interferon alpha production futile?... I certainly hope not...
@mattsmith4459
@mattsmith4459 Жыл бұрын
what does CAD stand for?
@stephaniekays6517
@stephaniekays6517 Жыл бұрын
I was poisoned by highly toxic chemicals that crossed the placenta when i was a fetus & i was born with MECFS & FM...& a genetic disease...i did get polio from the sugar cube vax & was in an iron lung for 6 weeks which may have added insult to injury...ME isn't all bug related! Consider more environmental reasons & causes!! 🙏 So i'm guessing i will never know what it's like to be pain & symptom free 😖 Thanx for trying to help ❣️
@danielturner1891
@danielturner1891 Жыл бұрын
Hey! I think you may have missed what the video was saying. According to this, ANYTHING that activates the innate immune response could trigger ME?CFS. They even specifically listed non-infection examples. Idk whether you'll even be well, but I hope so. This research can most likely help you just as much as everyone else. They are some of the few researchers actually doing incredible work out there for us.
@stephaniekays6517
@stephaniekays6517 Жыл бұрын
@@danielturner1891 i wasborn in 1951 & been trying to fix myself since i was 13... i'm fed up waiting for help 😪
@mattx6098
@mattx6098 Жыл бұрын
So are you scrapping the Metabolic trap hypothesis?
@JediNiyte
@JediNiyte Жыл бұрын
So what's the strategy for those of us who have no treatment other than symptomatic treatment? I manage mine with Ambien and Tramadol; it gives me 3-4 hours of functional time per day that I use to exercise and keep up the house. I do Jiu Jitsu and supplement with barbell work, so I'm fit, but still very fatigue sick. Should we be asking our healthcare providers to try specific treatments with us, or do we wait while this is explored further? Keep up the good work, Ron! BEARHUGS!!!
@mattsmith4459
@mattsmith4459 Жыл бұрын
if you can lift weights, exercise and do jui jitsu you don't have mecfs
@kjetil_
@kjetil_ Жыл бұрын
@@mattsmith4459maybe they have me/cfs, just very mild.
@riceman78
@riceman78 Жыл бұрын
So what is the plan from here?
@AlbaLynxQueen
@AlbaLynxQueen Жыл бұрын
To test the theory, I assume
@MealsBeast
@MealsBeast Жыл бұрын
pfizer did it to me
@AlbaLynxQueen
@AlbaLynxQueen Жыл бұрын
I kinda hoped that JAK stat inhibitors are the way to go.😢 But apparently, they are not effective.
@WaterDay936
@WaterDay936 Жыл бұрын
Hi, where have you read/heard that they are not effective?
@AlbaLynxQueen
@AlbaLynxQueen Жыл бұрын
@@WaterDay936 It was said in the video. One person was cured, but the rest didn't. Or saw minor improvements.
@dansmith9724
@dansmith9724 Жыл бұрын
Im not sure how blocking interferon helps?? Although not cures, substances like immunovir and I believe but could be wrong, ampligen, increase natural killer cell function by increasing natural interferon production. Also several Russian products such as cycloferon which are classed as interferon inducers and they also increase nk function and can help with chronic infections and have improved symptoms in cfsme patients. So, im intrigued at how blocking interferon alpha will help🤔
Jarred Younger, PhD | How Brain Inflammation Causes ME/CFS
20:52
Open Medicine Foundation - OMF
Рет қаралды 80 М.
Exclusive Interview with Ron Davis & Janet Dafoe!
16:34
Open Medicine Foundation - OMF
Рет қаралды 12 М.
ВЛОГ ДИАНА В ТУРЦИИ
1:31:22
Lady Diana VLOG
Рет қаралды 1,2 МЛН
Жездуха 41-серия
36:26
Million Show
Рет қаралды 5 МЛН
GIANT Gummy Worm #shorts
0:42
Mr DegrEE
Рет қаралды 152 МЛН
The HIDDEN Causes of ANEMIA (Iron Deficiency)
21:36
Dr. Bobby Price
Рет қаралды 4,5 М.
Neutrophil Assessment Platform: Dr. Ron Davis Shares Insights
14:39
Open Medicine Foundation - OMF
Рет қаралды 2,4 М.
Is ME/CFS Curable? Ronald W Davis lecture at the Sept 9, 2023 Fatigatio Symposium in Berlin
13:09
MECFS Collaborative Research Center at Stanford
Рет қаралды 4,4 М.
Defective energy metabolism in ME/CFS
35:24
Riksförbundet för ME-patienter
Рет қаралды 9 М.
Decentralized Medicine | Jack Kruse | Assembly 2023
43:06
Urbit
Рет қаралды 1,9 МЛН
An Interview with Ron Davis, PhD: #MayMomentumTuesdays 2022
32:48
Open Medicine Foundation - OMF
Рет қаралды 7 М.
ВЛОГ ДИАНА В ТУРЦИИ
1:31:22
Lady Diana VLOG
Рет қаралды 1,2 МЛН