Is ME/CFS Curable? Ronald W. Davis' Lecture at the 2023 Fatigatio Symposium
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- čas přidán 10. 09. 2023
- Ronald W. Davis, PhD, Chair of Open Medicine Foundation (OMF)'s Scientific Advisory Board & Director of the ME/CFS Collaborative Research Center at Stanford University discusses the question, "Is ME/CFS Curable?" at the 2023 Fatigatio Symposium held in Berlin Germany.
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!
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
@@brobinson8614well I no I began and it's surely made her worse natural organic protein from beef keeps me going
@@brobinson8614to be truthful yes it maybe does that but my grea uncle 94 best way to die hardening of arteries in old age
@@brobinson8614, no….carbs do that.
@brobinson8614 hijacking a comment for your own pet issue is scummy
Ron is a living legend and it’s shameful that the NIH hasn’t invested more in his crucial work on ME/CFS.
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.
I hope you recover again. ❤
How were u cured????? Diet ,,,rest. Explain
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
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!
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?
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.
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.
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🙏
@@melaniavxzq2983You can try drinking buy batches of nettle leaf tea ( not in teabags) every day, it restored my iron deficiency.
You hit the nail on the head. ❤
@@laurabone3228It is very true however, that excessive obsession over your illness makes it worse.
You have to believe that you will be healthy.
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 🎶🎵
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🦋
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!
this is incredibly encouraging... thank you so much Dr Davis for all your wonderful work...
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! ❤
Thank you for your dedication in researching M.E/CFS
Your research findings are comforting. I live in hope for a cure 🙏🏻
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.
Pr. Ron Davis - you are my hero! God bless you and your family. I have so much hope now!
Thanks to the OMF-team, keep up the good work. Updates like these are greatly appreciated.
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!
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 🤗
@@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...
Thank you so much for trying to help us!!! It means the world ❤
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
how did you avoid crashes ?
Thanks Ron + OMF team. Let's solve this!
Mis oraciones para todos los enfermos e investigadores. Especialmente para el doctor Davis y su esposa e hijo. Dios los bendiga abundantemente. Desde Argentina 😚😚😚😚
A true hero.
Thank you Ron and all involved in this research. Your hard work is greatly appreciated.
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.
Thank you for all you do for our population…..hope is so important when you’re not believed
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?
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.
Covid triggered it for me
I definitely think you are onto something, it would help millions of people all around the world. Super exciting!
Long Covid since 2019 the fatigue is just the worst xxx
Ask your MD about this...
pubmed.ncbi.nlm.nih.gov/33807280/
It seems to better long covid patients, at least... I hope? 🌸
What are you talking about? Covid only started in 2020.
@@-TheRealThing- It's called COVID-19 because it was discovered in 2019
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”
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.
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.
How did you do it?🙏🙏🙏
Was it spontaneous?
What helped you?
How did you recover?
Yes, how.... please
Thank God we have you and your team trying to figure this out
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🙏🏼💙
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
Thank you Doctor. More avenues to explore in a hope of being cured 😊
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 🤷🏼♀️
Thank you again for all the work that you and many more are doing!! 🙏🙏🙏🙏
This give me hope that recovery is still possible, even after nearly a decade of this.
Thank you for all your work. I was diagnosed in 2016 after years of drs not believing my symptoms.
It's strange, I keep seeing people getting sick with ME around 2015-2016. I wonder if something happened around that year. Very strange.
@@lmnts556stress maybe but it would if been there before any hypomobility?
Good morning Ron. I started Abilify today, wish me luck.
Hi, did you read that abilify may help you? I also have it
@@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.
That's a no, made my muscles hurt horribly and made me emotional.
Great work! Thanks for the info. Praying for your research team. These videos give me hope. 🙏🏼🤍
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.
Thank you I find your updates the best in the research forums and have hope when reading 😊❤
Thank you for all you are doing to research CFS treatment!
Thank you so much for this excellent information. Blessings for you and your family and your beloved, precious son.
I’ve had covid twice and for some strange reason my ME/CFS symptoms improve at the beginning of the covid infection.
I also get mini remission for a day when I spike a fever from flu, food poisoning, etc. It's the immune system switching.
@@valentinaruseva7612 Your immune system stop fighting you and starts fighting the foreign infection
@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.
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 🙏🌹
❤ Thank you for the updates. They give me hope.
🙏🙏🙏🙏 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
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.
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.
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
Thank you!!!!
Thank you 🙏 ❤
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.
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
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.
Really working on not crashing since spring of 2023... not much of an improvement yet. Perhaps by next spring things will get better?
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
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.
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.
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.
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.
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.
Can we help with the studies some how? We who are sick.
I would gladly be used to get information about CFS
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.
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. :-)
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
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
@@kimwarburton8490did you have much pain are you hypermobile
@@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
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.
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
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
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.
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.
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.
🙏♥️🙏
Do we know what the function of the Itaconate pathway is in healthy people?
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.
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”
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?
What a legend.
Q: Regarding Long Covid, wouldn't viral persistance make blocking interferon alpha production futile?... I certainly hope not...
❤
Dear Ron and Team, thank you much, you're all wonderful human beings! Could an underlying Fatty Acid Oxidation Disease be the cause for this? I had metabolic tests done 10 years ago and again last month and it shows that I am unable to digest and utilise fatty acids properly, the profile being the same, just much worse now. I had some genetic tests and it shows that I have mutations on the gene that codes for short-chain CoA dehydrogenase deficiency. I am going to have more done soon for other genes, but it makes sense since I have severe ME/CFS now from Covid, but have clearly had milder versions every time any additional energy requirements have been put on my body - oftentimes being given strong medications, infections, fasting periods, viruses and even pre-menstrually. I assume that I am relying on just pyruvate and a tiny bit of amino acid with any fatty acids having to go through one of the non-Acyl CoA routes to be useful, but this is very very slow. I can also see now that any starches and fats, that need to be broken down in the colon aren't going to be very successful because there is a double-edged sword of them needing certain bacteria to break them down, but that process (for most bacteria) requires ATP too. So I have high levels of phospholipids and no short-chains in my stool and a number of metabolites in my urine that reflects this too such as high adipic acid, etc. I was wondering whether you have looked into FAODs as a potential cause since the symptoms of this (exercise intolerance, muscle weakness, neurological impacts, neuropathy, etc) and relying on alternative routes to derive ATP from fatty acids seems almost identical... I'd be very interested to hear about your understanding of any links and where I might be able to find more information to read. Thank you so much for everything you're doing!
This is a metabolic myopathy, the symptoms are very similar to ME/CFS but not the same. Also, you can be genetically and metabolically tested as you were. I know a girl who was misdiagnosed with ME/CFS she had a fatty acid disorder called MADD Multiple acyl Coa dehydrogenase deficiency. She recovered with high doses Riboflavin, Coq10 and L-carnitine and a high carb low fat diet. It looked a lot like ME but it wasn't.
@@valentinaruseva7612what is the test for this
What test was it called
@@valentinaruseva7612 high dose
@tomsale5142 enzyme testing in blood, skin and sometimes muscle biopsy ; acyl carnitines tested in blood, amino acids in blood. Also, organic acids in urine. All these tests should go under the name of metabolic panel for newborns but of course all the tests can be performed on an an adult as well because not all metabolic myopathies are congenital, some of them are acquired later in life. Also genetic testing can be done if one suspects it's a genetic disorder that started showing itself later in life ( that happens).
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
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. 😊
@@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/
Does this mean if we take ATP supplements it could help?
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 ❣️
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.
@@danielturner1891 i wasborn in 1951 & been trying to fix myself since i was 13... i'm fed up waiting for help 😪
Thank you so very much!
Does this include fibromyalgia?
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.
So what is the treatment
So are you scrapping the Metabolic trap hypothesis?
what does CAD stand for?
So what is the plan from here?
To test the theory, I assume
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🤔
I kinda hoped that JAK stat inhibitors are the way to go.😢 But apparently, they are not effective.
Hi, where have you read/heard that they are not effective?
@@WaterDay936 It was said in the video. One person was cured, but the rest didn't. Or saw minor improvements.
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!!!
if you can lift weights, exercise and do jui jitsu you don't have mecfs
@@mattsmith4459maybe they have me/cfs, just very mild.
Low dose psilocybin mushroom therapy may greatly help these patients as well. 🙏 Praying for all those affected. ❤️
It took months for him to tell us the same thing we need a cure now !
This is about cell health and mitochondria health. What about the blood flow issues we see in Long Covid? Especially the hypoxia due to blood flow issues which doesn't allow for enough oxygenated blood to the muscles? Can that also be caused by this? Or are the blood flow issues need to be sought with another cause?
Hi Ron. I've manufactured pneumatic exercise equipment that provides a consistent resistance through the exercise repetitions. A clents with Lupus, who's severe condition was triggered by a hysterectomy 16 years ago started doing exercise 14 months ago. Doing 20 min at manageable weights twice a week. After 3 months she chose to stop her chronic meds. Subsequent blood tests showed improved organ function. She has not had a flare-up while continuing her routine for the past 12 months. Where she now does 350 reps at very respectable weights in 25 min. Would you speculate that her body has decided to cooperate during exertion, rather than remain in a defensive mode. Would you consider the myokine released from skeletal muscles being partly responsible for signalling her immune system to move towards normal levels, and improved mitochondrial health? As she now feels energized after 20 min of exercise.
Exercise is very, very tricky with ME/cfs. Most can't exercise at all and even minor exertion (like brushing their teeth) can make them more ill. Many people have tried the exercise approach, only to become more disabled.
The distinction with exercise seem to be to use a modality that is soft and safe. Here software controlled pneumatics may elicit cooperation from the body rather than trigger an adverse response.
@@JohnvanNiekerk-gn5mu. Dave Mayo worked with an elderly man work his leg circulation with a device. Really helped him
@@JohnvanNiekerk-gn5mu Aerobic exercise is definitely unsafe. But like I said, even simple things like brushing teeth or going to the loo can trigger more symptoms. You can't exercise yourself out of this illness. It's complicated. The whole energy metabolism is upside down and inside out.
I wish it was that simple. Maybe you should market it to lupus patients instead.
How come taking a whole stack of ATP supplements does absolutely nothing?
good question. Did you take pure ATP powder?
Sorry as part of my ME, I have brain fog, what is the cure? Did I miss it?
There is none. But if itaconate shunt theory is correct, then it might be curable. That's the update. Nothing new, basically
@@AlbaLynxQueen It’s so annoying when we’ve spent years imprisoned in our beds, most of the time, we get our hopes up, when we see thumbnails or headings suggesting a cure has been found, only to find, it’s only nothing more than a hypothesis………. I think they have good intentions but the same, well meaning people, would not tease a dog, knowing they had no way of feeding them………… Please be aware how it may affect us.
I haven't found anything that cure the brainfog, but I alternate between 10 mg NADH, or 10 mg manganese, or 500 mg Benfothiamine.
I don't take all three, just one at the time. It gives me some relief, at least!
I'm not saying it would give relief to everyone, just that it helps me a little bit. 😊
OMF has seen that many severe ME sufferers has a bit low levels of Q10, manganese, selenium, prognenolone (hormone).
Talk to your dr before taking any supplements and make sure it doesn't "collide" with other medicines or diseases.
Take care! 😊🌸
@@nevsart5884the title is literally asking the question «Is ME/CFS curable?». They didn’t say or suggest they have a cure.
What does it mean that CAD gets "imported" into the mitochondria. How? 😅
A cure? Too much to hope for after all this time. We need a cure.
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How does this theory tie in with some CFSers improve after having c0vid vax?
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.
Could I get in touch with you to see if you could help me?
He should write I'd down for everyone
Why stop the video mid sentence????
Have you determined toxins (endo, actinomycetes, or mycotoxins) as a root cause for some?
First update in 9 months,and I still feel like your a long shot of curing the disease!! It's the same old update, people thank ya and say this sounds like good news, but nothing ever comes of it and just sit around and wait year after year!! It's getting ridiculous,how long this is taking!!
Research takes time!
They have been researching cancer and diabetes for almost a century, and they get huge grants for their research. It's still not solved!
And it never will be. It's a huge industry and a lot of money involved in producing medicines... They will make new and more medicines - but not cure the diseases... They will not cut of the very lucruative branch they are sittning on... 😊
OMF has actually accomplished a lot in the understanding of ME in a very short time!
This is a complicated, complex disease!
It's spreading over neurology, metabolism, hormones, circulation (heart and lungs) and a lot more.
A specialist is often just educated to work on one organ, like the heart or the lungs, and only one little part or function of that organ.
It takes a lot of skilled specialists, many years of work and a lot of money to solve a complex disease like ME.
I really admire Ron Davis for his skills, dedication, openness, non-profit research, and the network of international collaboration that he has brought together.
Unfortunatelly research is way too often about money, greed and ambition rather than seeking a cure and help for the people.
That's only my opinion and how I see it... 😊
Because of the way OMF are researching, collaborating and working together internationally, I really hope and believe, that it can speed up the process and that we can get some break through and treatment within a few yrs time. I hope! 🙏
The last time OMF talked about this topic was when they talked about a theory they were about to start researching.
This time it's the result of that research so far...
To be continued... research takes time... 😊
I hope you can understand my not so skilled tourist-english. 😊 (I'm a "ME collegue" from Sweden). 😊
Just hang in there! One day at the time!
🤗🌸
it’s an incredible hard illness to figure out though… I think the OMF team is working hard and I beleive they’re onto something. let’s try and be positive, although it’s difficult.
Dont be silly. This can take another decade. OMF are one of few trying to figure this out
What do ya mean, don't be silly?? It's all ready ridiculous!!
pfizer did it to me
Back surgery & bad divorce, ME since around 1996 to now 2024 & fibromyalgia.