At a time when I have just been dumped by a pain clinic, rejected by my only local GP, had the worst crash where I can’t lift my arms, been through Xmas and the new year estranged from my family for the fifth time, you two bring hope. Thank you for taking the time to make this video and I hope it buffers the onslaught of questions somewhat. So much gratitude to you. Thank you ❤
If you dont mind being on an addictive drug like suboxone, there is a natural alternative that has huge positive effects on pain, stiffness. It comes with downsides however as it contains a partial opiate. Many in my FB group have reported miraculous benefits, but also some people have pointed out longer term issues with taking any opiate. The substance is called kr@tom. I just want to be very clear that every downside should be understood. Im a bit older, so i dont mind being dependent on something, its something that i accepted from the outset. Good luck. I hope you find answers, or get to a pain clinic, which is something im also trying to get seen by.
I know this is an old comment but could I ask how old you are? I can’t imagine living with this disease for 60 years and I wouldn’t have thought it was possible to live in to old age with it, I certainly don’t feel like my body could take another 5 or 6 decades of it.
Thank you Ron and Janet for keeping hope in your hearts for us struggling with ME/CFS.I developed alkalosing spondolitis a year after a serious RTA in 1990 then developed career ending moderate level ME/CFS and fibromyalgia 23 years after that.I enjoy donating small amounts to your groundbreaking research when I can.Thank you for your hard work when I can no longer work.I hope Whitney your Brave Son has a better year in 2024.Your videos are truly life affirming and I love to see you speak together with such devotion.I am delighted to know you got to enjoy al trip to Norway last Summer.Your knitwear looks great on you.Wishing you,Whitney and all there further success and the best of vibrant good health in 2024.You so deserve it.Waving from Ireland ☘️☘️☘️
So, to summarise, your early research indicates that half of ME patients may have an antibody that's also in MS patients, and may respond to Copaxone? Fascinating. Thank you for your work. Cheers from Melbourne Australia
Thank God for both of you. Thank you so much for all of your advocacy and push towards a cure. This is so interesting and hopeful. I have been diagnosed with ME/CFS and with ankylosing spondylitis, an autoimmune disease. I don’t know if they both came from the same viral incident, but I definitely became incapacitated from both at the same time. Best wishes for a happy and healthy new year.
I was tested multiple times for MS as public hospital neurologists were so sure I had it and they couldn't understand why MRI etc were negative. Someone in one of the me/cfs groups I'm in actually asked if anyone else was initially suspected and tested for MS and there were a lot of us. There was some discussion too about whether there might be some link too. I'm severe, this explains a lot for me. I'm very much looking forward to the next video. Thannk you so much for sharing.
This was same for me, initially MS, or Parkinson’s and to rule out brain cancer. I asked to look at my brain MRI and saw a few whitish small lines, asked what they were but radiologist said they could not comment and to wait for report. I was given a drug for Parkinson’s but wasn’t given that diagnosis. This was early 2000 and I wasn’t as aware of things like I am now and did what doctors told me. I felt fatigued, neck, head, spine pain, falling for no reason, legs jerking up for no reason, always have vision problems, cognition issues, pain, tingling under skin (ME symptoms including PEM) also had transient periods of paralysis over 10 years. I have suffered from bowel problems (IBS) since teens. I lived in small village in U.K. surrounded by farms and land in 1960’s (thinking organophosphate etc use) I learned that two school friends few doors away also ‘developed’ ME….. Living in the U.K. I doubt I can ask for repeat MRI, or anything in the current state of NHS/finance etc. I’m 62 and have been moderate to severe with ME or whatever this is and believe it started in my teens and am so very desperate to feel even 20% better. Will I/we ever get the help we need. I am very grateful to Professor Ron Davis and team for all their work. ME is a nasty insidious puzzle and it’s shameful that our Governments won’t find adequate funding. There are so many people now suffering with Long Covid which shares many similarities with ME. Thanks to you also Janet Dafoe. I feel you may be our only hope. 🙏🏻😊🥰🙅♀️🙅♀️
@@sallysampson628list my mum to severe ms my father has CFS to but better at 75 than 49 I've had CFS 27 years fybromyalgia 6 or part if CFS MRIs clear found out why I have autism as my late mother heds undiagnosed.my father has ADHD causation for CFS to rccx gene theory my son's now diagnosed ADHD autism fatigue symptoms no pain yet at 13 get checked for these
Thank you both for your tireless efforts. Ron, love that you have made your own Compaxone to experiment with. We call this the No. 8 Wire approach down here in New Zealand. Where there is a will, there is a way! I'm fascinated by this, as I've been more than a little concerned that when I flare, the pain I experience is nerve pain and have wondered if my myelin is being damaged. In my very first MECFS episode I thought must have cancer in my hip. I couldn't stand lying on it and whenever I flare the same pain sites erupt. It's like a fire at these sites. I also felt like I had had a stroke down my right side as things were just shaky and not my normal ... but as you know, standard tests showed nothing. The biggest frustration we all face, is that it's tough to walk into your primary care doctor and ask for a MS work up based on a new possibility. I'm sure they 'roll their eyes out loud' when I walk in the door, but if they only knew what it feels like to live in an MECFS body. I'm 9 years on from the beginning of my MECFS journey and have recovered remarkably, but not fully. It's slightly terrifying to wonder if something is going to smash me back to the state I was in the first couple of years. I live in hope that beautiful souls like you will crack this thing and am forever grateful that you keep going.
I was tentatively diagnosed with MS via a MRI. Bizarre as I only saw this diagnosis as a note to another physician asking a benign way to tell ME the patient. Odd no one ever told me.
Have you talked to prof Jonas Bergqvist about this? If I remember right, he had found an autoantibody in the blood of ME/CFS patients, that MS-patients has as well. However, MS patients has it in CNS, and ME/CFS only have it in the blood. Dr Jonas said it was a good thing, it can be washed out of the blood, but not out of the brain... If I remember right... 😊 And thankyou so, so much for all your work! Thanks to you guys, there is a big International organisation doing research on ME/CFS today! You two started OMF, and the openness, and the information you have shared, has been my hope, and the light in the end of the tunnel. Thankyou! 🙏❤🙏❤🙏
Hi, I was diagnosed with Remitting and Relapsing MS a few years prior my diagnosis of ME/CFS in 2023. There are cases of both MS and ME/CFS which seem to coexist. Thank you for bringing awareness to this topic.
I'm sitting here crying at this, you are angels. Suffering from ME/CFS since age 14 (had mono at age 12 etc), debilitated, now age 62. Thank you for continuing this work. Went to high school near a bunch of chemical refineries that didn't follow rules on the outskirts of Houston in late 70s. A person close to me there wound up with MS and told me that many people at our school had had CFS. I had moved back to North Carolina my home state by then after being in other places as well. One a very polluted city, London england. Which debilitated me horribly and that's when I really went downhill starting age 19. He, a youthful & robust man by nature, died of MS in a nursing home later, despondent, alone, age 61, after years of traumatic struggle, self-advocacy, debilitation and decline. Bless you as you look through the facades, the veils, the medical industry, and through the cracks to see the light at the end of these tunnels. I can barely speak I'm in tears.
Amazing that Dr Davis is following the same path as doctors did back in 1986 in comparing the mystery illness (years before it was named CFS) to MS. Page 54. Osler's Web.
Thank you both for your continued efforts and for your research, Dr. Davis. This has come at an interesting time as my neurologist recently looked back on my old MRI imaging and noticed what appears to be a small lesion on my cervical spine. What adds to the complexity of this is that mold mycotoxins can cause neurological damage to the myelin sheath (so I've read). I certainly present similar to MS, but I most definitely fit the criteria for CFS.
This is very much case since I became ME in 1991. I remember queuing outside internet cafe to look up “latest cure” before we all had hi fi. Lot of ppl getting rich on “How to Cure ME” courses.
So what does that mean for the Itaconate Shunt or the WASF3 NIH study? ME/CFS research is all over the place... one month its one pathway causing it and then one month is a different one. I don't get it.
Thank you both for all your work i have tried to help over the years with small donations. I got sick when toxic chemicals crossed the placenta that my parents worked with when i was a foetus in 1950..i have hEds, MECFS, Fibromyalgia & 3 major neuro problems since birth...no help from docs so became my own doc at age 13 via library books...survived a brain aneurysm haemorrhage too..9mm of 12 has ruptured 3mm now 5mm pending rupture... Please find us a cure & thank you for all you do...xxx
I have heds fybromyalgia cfs lost my mum last year to severe ms heds we have asperger's to causation my grandfather had heds to and his mother grandmother and all had autism so I can date it back to 1860 all have OCD my son now diagnosed autism ADHD ocd
I think what those MS specialists (which Ron mentioned) ment was ME/CFS is a diagnosis of exclusion (currently), which means if you have MS, then you have MS, not ME.
I read about capaxone years ago and I understand the number of amino acids randomely arainged and the poss of alergic reactions due to these random arrangements. thank you both Your heros to so many.
Thank you so for this update! I know you must both be so busy. I'm fortunate to have good support at home, but this illness is so pernicious and soul-sapping. I have a severe case and my adult daughter has it as well. Signs of progress toward new treatments lift my spirits.
I have CFS too and couchbound. I really got worse when I took many antibiotics for a couple of years. The theory of holistic medicine is dysbiosis and leaky gut. The problem is I have MCAs/histamine intolerance too so I don’t tolerate any meds. Some people who have not severe CFS can tolerate probiotics and it really helps them a lot. They said increased intestinal permeability is the caused of all autoimmune diseases. I get a bit better with TA 1 peptide but I developed sensitivity to it like having migraines. But I pray we quickly find a treatment for it and improve even just by 50%. So no drug companies are doing a research on this? It’s so sad. If MS can be treated, maybe CFS can be treated too. Some people who have long Covid have gut issues too and 80% of immune system is in the gut.
I loved the comment near the end of the video, about “shutting down ME” because when I got ME, it felt exactly like someone had flipped off a switch in my body, which permitted all hell to be physically unleashed on me! If only we could go back in time, to when I was alive & find that switch & turn it back on!! It was 14 years ago on 12/24/09 when I got the worst flu I’d ever had, despite being vaccinated for the seasonal flu & H1N1 (a requirement since I’m an RN)! Once that flu started weeks passed by & I couldn’t get better! Finally 6-7 weeks later, some of the flu symptoms began abating, but a new laundry list of symptoms were randomly being added! Severe fatigue, weakness & the strange heaviness in my extremities persisted, making it feel like lifting a thousand pounds to take a step or raise my arms. Orthostatic intolerance confined me to a recliner & standing in the shower made me dizzy & my feet turned purple. My hands & feet always felt painfully cold & I developed Reynaud’s syndrome along with the onset of multiple inflammatory conditions like: costal costochondritis, followed by cystitis- a painful inflammatory bladder condition that eventually resolved on its own- thank God! Then carpal tunnel syndrome, a frozen right thumb joint & an inflammatory knee condition- with all 3 requiring surgery during the first year I was sick! Despite previously bicycling 200 miles weekly for over 10 years, now at 51 years old, I was suddenly, severely short of breath doing the simplest activities & even at rest at times! Simply taking a bath wipes me out-so I can only tolerate it one to two times weekly! I had photophobia- stabbing eye pain, nausea, loss of taste, poor appetite & a sudden aversion to certain foods & all meat & alcohol products- even a TV commercial about alcohol induced nausea! Large amounts of my hair were falling out across my entire head, drenching sweats- required pajama changes hourly at times, rashes, sleep dysregulation (ranging from not being able to remain asleep more than two hours to sleeping for several days & circadian rhythm reversal), brain fog set in & I could only describe it by saying, “something is wrong with me, I can’t think!” A sore, red throat & weak, hoarse voice lasted for 10 years & probably a dozen other things I can’t think of right now! I’d describe the onset of ME, as feeling like you’re an eagle soaring through brilliant, blue skies(with a occasional clouds, of course), then suddenly, out of nowhere, someone shoots you down in mid-flight!! Sadly, decades have passed, with no one looking for the shooter- instead they’ve attacked the eagles for not flying anymore! God bless you for your efforts in behalf of this patient population! I am praying someone will find the master-switch that was flipped in our bodies when we were hit by the flu!
And why don't they think in terms that one viral infection can lodge in the body in different places, in different ways, and most importantly to present in two different ways?! I was a science major in school but too ill to finish to get my biochemistry degree. Am I making sense? I know I make more sense than they do. Most of us do! Thank you so much at the end here for extrapolating this to the idea that this is happening with other diseases in other ways. That's the only logical, ie intelligently holistic, way to think about this or most anything.
Ron is obvious sincere in his motive and character, hes got to be one of the best at conventional medicine, I just feel like conventional medicine is misguided and ineffective, and thats why we aren't getting anywhere with figuring out ME/CFS.
@@janetld sure but in his official position hes not going to be allowed to stray too far from the ideological reservation and the outcomes big pharma is looking for, or they try to not publish the research or withold the funding or remove people from their job positions. For a window into different perspectives I would recommend to read the books of Dr Tom Cowan.
At age 21 I suddenly lost use of my legs for about 30 hours. I was told after 2day stay in neurological unit that I had isolated episode of MS. I had no more problems over years except reacting strongly to flu jabs but in 1991 I took what was diagnosed as severe ME and have only recovered about 50% over years. In 1990s there was no definitive test for MS (so I was told). I have had no treatment for ME but use pacing as much as is possible and so lead very energy managed life, working part time and prioritising rest.
Thanks to both of you for this video and info. It does give baby steps of hope. I wish to god i could get to Stanford for some studies. I believe you might find i have some unique issues and test results. I wonder how many ME patients have polyclonal hypergammaglobulinemia AND selective IGA deficiency plus almost non-existent IGM. So so many of us are a complete puzzlement to our doctors who cant wait to get us out of their offices. As you both say, complicated just ain't worth the time. 😢
You are inspiring. Ive lost hope of finding anything to help me in my lifetime. But i hope for all those suffering that they can find relief. Especially young people whose lives have been so robbed. The sweaters are lovely.
I would try it immediately and would like to tell you about the results. To visit an MS special center, I would need many more spoons than I have available. I think my MD should be able to do an antibody test too, right? Could you please be so kind as to tell me the name of the antibody so that I can ask my MD? Thank you very much for everything you do!
I have had M.E for 28 years l am a74 year old male a few years ago l managed to obtain the painkiller nubain for osteoarthritis l used this for about 6 years after a few weeks l felt so much better it helped it really helped the foggy head and most of the other symptoms but unfortunately lost my contact M.E returned pre nubain days alan in the U.K
It must be so disheartening to lose your access to Nubain when it clearly worked for you. As it's an opioid, few doctors would be likely to prescribe it because of its addictive qualities. Honestly, we get to an age and stage of debilitating chronic illness and pain...and really don't care if we're addicted or not. It helps! It makes our lives so much better and most of us would use it responsibly. I've had ME for 28 years, too. Hi from Australia.
@@melindajensen9881 thank you so much for your lovely message, I have written to professor Ron Davis in America about the Nubain and waiting to see if I get a reply, I do take Tramadol from the doctor for arthritis in the spine and I do think is helps a little bit for the M.E take care and all the best Alan from the U.K
صور الدماغ الشرايين والوعيه بل رنين الملون تلاحض شرايين مسدده واوعيه ضيقه لا يوصل الدم بشكل جيد لنحاء الجسم مما يدي كل هاذهي العراض دكتور بل الا ردن استكشف هاذهي العراض الي اعاني منها متذو سنين
Girl living in a house develops MS. 6 months later another person moves into the same house as well. Develop what they think is MS (then said CFS/ME abd MS) Both still living there together. Second persons moves out and recovers. First person stays and becomes severe case. More donations should be given to people who want to leave their environment but can't due to financial issues instead of giving it to the round and round and round research of the Open Medicine Foundation which is actually getting nowhere. Three ladies living on the same street three become wheelchair bound. One person leaves that location and recovers. The other two are still in the location and still wheelchair bound. Have story after story of people getting out of a location and recovering and all others stay and never to this day have recovered.
Wow I'm so glad I'm finally here! My Rheumatologist put me onto a website called Rising Health which lead me to the video Janet & Rob did on the Itaconate Shunt, fabulous by the way ❤Currently bed ridden with extreme PEM I decided to watch it, the next to pop up was this little beauty. I live in Melbourne Australia & am excited to hear an Aussie is part of the team. I had Epstein Barr virus at around age 14-15, parents sent me back to school after a couple of weeks in bed. Now I understand more about the illness I can see I have been struggling with ME for most of my life. I wasn't diagnosed until 2018 at the age of 45. All those years with this crippling illness. I have often wondered with more recent decline in cognitive function if I also had MS? I put that thought aside as I knew what every GP & Specialist would say "You're Bat Shit Crazy" & point me to the door. In 2022 I started to notice a shape decline in cognitive function. After typing I would read what looked like some weird foreign language on the page. My brain would be saying one thing but I would type something that was unreadable. I'm going to speak to my current GP about the possible connection to MS & ME/CFS as he will be open to this possibility & I'll keep you posted if we find anything on a MRI scan for MS. I'm deeply curious to see what might show up. Although I am also going through rather extreme menopause, thanks to a pre existing Adenomyosis, & that could explain the shape decline in cognitive function. Actually I have a question to ask about any connections with menopause & ME/CFS & also the higher numbers of female patients with ME/CFS? I am connected up with EMERGE Australia & the numbers tell a very interesting story, 75% of ME/CFS people are female here in AUS. Has anyone else found the same in their part of the world? Apologies in advance for the essay size comment..........FYI I typed this in word first to make sure it all made sense lol.......there were many ME/CFS brain fart moments & this comment took me 3 days to do🤣
The two-diseases thing sounds surprisingly dumb, especially considering that both diseases aren't even understood yet in terms of their pathogenic pathways. Having fluctuating voltage in a house can totally lead to flickering of one TV and cold water in another room. It simply depends on the wires and the robustness of the systems that have to deal with the voltage changes. Well, good luck with everything!
can the Drs. or someone on here tell me if fibromyalgia and or ME CFS is recognized by any medical profession as being a neurological disease or syndrome can you refer my to any such literature would be helpful thank you from Canada
In 2019 I was dx w psoriatic arthritis then had covid in 2021 and mostly struggle w chronic fatigue. HCQ seems to help some as I tried stopping it once. Not sure what is what but it is pretty life altering. A person is pretty much on their own w this stuff. Thanks for the info.
Hey you guys, could you please specify what test results from patients you are looking for? No one seems to really understand from what Ihe heard from patients. Thanks!
Thanks for all you folks do . Had ME since a bad case of Mono in 1987. I've recovered over the years but have never been healthy since 1987. Maybe it's just coincidence but my wife was diagnosed with MS 7 years ago.
No coincidence it's rccx gene theory linked to autism.adhd heds.list my mum to severe ms last year father had CFS lot better at 75 than 49 I have CFS fybromyalgia 27 years
I’ve had CFS after having my second child in 1994 and having Glandular fever. It returned on and off (never as bad as the first), although after an emotional time, it hit me again in 2022. After having COVID jab (I never had COVID) & a stomach bug. Bloods showed my innate immune system was activated. I did what I did last time, which was to eat as healthily as I could, exercise regularly, but not overdo it. CFS just got worse. So went to the doctor again. He confirmed that I was healthy, my oxygen sats were good despite having bronchectsis. However, had high inflammation (CRP & ESR), also had RF, so was diagnosed with Rheumatoid Arthritis. I actually got referred to a CF unit in between, which took a year to get an appointment (NHS in UK), but when they found out about my RA diagnosis, they could not treat my CFS 😮. Ridiculous!
The clue to post exacerbation malaise is as far as possible to stick to your energy envelope. It’s as if the overused muscle/brain releases the component that causes the symptoms. Don’t do it. Easy said but if you are bowing to pressure, not easy to do.
@@Truerealism747 , thanks for that info. Although I do have pain, weird pain, I’m lucky that it’s not usually dominant for me. Severe fatigue is my biggest issue. Since I asked that, I’ve found a channel related to a Neuro inflammation lab at UAB. One of the things the guy is looking into is dextronaltrexone which might allow people to be helped that aren’t helped by low-dose naltrexone. Because it looks like it won’t have the same side effects, you can take a higher dose. But it does the same beneficial thing. It’s Dr Younger.
I was dx with pots me /cfs/ chronic pain syndrome and I have lots of punctuate lesions which an MS specialist said was not MS but from ischemia and or migraines.... Interesting. Also I have 2 aunts who actually do have MS, one takes copaxone.. Wondering if COMT gene and low BDNF play a factor
'Cognitive' is not a synonym for 'mental'. The mental problems such as brain fog, which ME/CFS patients suffer is not limited to cognitive functions. Please get this right.
I have symptoms of both M.S.& ME/CFS.Since my difficulty arose after a complicated Cytokine Storm,I’ve always been disappointed with the One disease only idea. I’ve heard from expert Researchers that M. S. Often takes a long time to develop .May you continue to be inspired- know of our deep appreciation 💞💪🙏
My group calls brain retraining snake oil! I tried LDN. For three years without any improvement. Source stopped with covid and no change. Saved myself £60 month!
Hi Janet, idk who to report this to, or if its completely anecdotal, but last month i felt pretty good! and the only thing i did different was make maple fudge for gifts, and of course ate little pieces along the way, basically sugar and fat, so i looked up a few things and apparently the brain NEEDS glucose all the time and thats how it signals the body to make ATP and mitochondria energy. any woo, ive been eating small bits of fudge thoughout the day since then and still feel great! i was severe. idk if yall can look into this sugar/mitochrondria thing cuz i cant eat fudge forever, (altho tempting) perhaps the EBarr virus attacks the glucose regulation/production? Concerning your new discovery Ron, i have often wondered if CFS is some kind of MS - like disease, or a subset of it. i have many of the symptoms but MRI said nothing yrs ago. I know there is sadness along with what is perhaps your greatest breakthrough discovery on this, but you have helped a LOT of us out here suffering AND being abused FOR suffering by the typical medical field. Sending heart hugs of thanks to both of you🫂💜
Thank you so much Ron & Janet for your dedication and hard work .It means so much that you are very patient orientated and keep us informed . You give me a lot of hope as i have severe M.E I've not been tested for MS ,Not easy to access anything for M.E in the UK. 🫶
At a time when I have just been dumped by a pain clinic, rejected by my only local GP, had the worst crash where I can’t lift my arms, been through Xmas and the new year estranged from my family for the fifth time, you two bring hope. Thank you for taking the time to make this video and I hope it buffers the onslaught of questions somewhat. So much gratitude to you. Thank you ❤
If you dont mind being on an addictive drug like suboxone, there is a natural alternative that has huge positive effects on pain, stiffness. It comes with downsides however as it contains a partial opiate. Many in my FB group have reported miraculous benefits, but also some people have pointed out longer term issues with taking any opiate. The substance is called kr@tom. I just want to be very clear that every downside should be understood. Im a bit older, so i dont mind being dependent on something, its something that i accepted from the outset. Good luck. I hope you find answers, or get to a pain clinic, which is something im also trying to get seen by.
Thank you both so much for all you do. I've had me/cfs for more than 60 years.
Do you have heds and do you have much pain with it
I know this is an old comment but could I ask how old you are? I can’t imagine living with this disease for 60 years and I wouldn’t have thought it was possible to live in to old age with it, I certainly don’t feel like my body could take another 5 or 6 decades of it.
god speed
Thank you Ron and Janet for keeping hope in your hearts for us struggling with ME/CFS.I developed alkalosing spondolitis a year after a serious RTA in 1990 then developed career ending moderate level ME/CFS and fibromyalgia 23 years after that.I enjoy donating small amounts to your groundbreaking research when I can.Thank you for your hard work when I can no longer work.I hope Whitney your Brave Son has a better year in 2024.Your videos are truly life affirming and I love to see you speak together with such devotion.I am delighted to know you got to enjoy al trip to Norway last Summer.Your knitwear looks great on you.Wishing you,Whitney and all there further success and the best of vibrant good health in 2024.You so deserve it.Waving from Ireland ☘️☘️☘️
So, to summarise, your early research indicates that half of ME patients may have an antibody that's also in MS patients, and may respond to Copaxone? Fascinating. Thank you for your work. Cheers from Melbourne Australia
Thank God for both of you. Thank you so much for all of your advocacy and push towards a cure. This is so interesting and hopeful. I have been diagnosed with ME/CFS and with ankylosing spondylitis, an autoimmune disease. I don’t know if they both came from the same viral incident, but I definitely became incapacitated from both at the same time. Best wishes for a happy and healthy new year.
I was tested multiple times for MS as public hospital neurologists were so sure I had it and they couldn't understand why MRI etc were negative. Someone in one of the me/cfs groups I'm in actually asked if anyone else was initially suspected and tested for MS and there were a lot of us. There was some discussion too about whether there might be some link too. I'm severe, this explains a lot for me. I'm very much looking forward to the next video. Thannk you so much for sharing.
This was same for me, initially MS, or Parkinson’s and to rule out brain cancer.
I asked to look at my brain MRI and saw a few whitish small lines, asked what they were but radiologist said they could not comment and to wait for report. I was given a drug for Parkinson’s but wasn’t given that diagnosis. This was early 2000 and I wasn’t as aware of things like I am now and did what doctors told me.
I felt fatigued, neck, head, spine pain, falling for no reason, legs jerking up for no reason, always have vision problems, cognition issues, pain, tingling under skin (ME symptoms including PEM) also had transient periods of paralysis over 10 years. I have suffered from bowel problems (IBS) since teens.
I lived in small village in U.K. surrounded by farms and land in 1960’s (thinking organophosphate etc use) I learned that two school friends few doors away also ‘developed’ ME…..
Living in the U.K. I doubt I can ask for repeat MRI, or anything in the current state of NHS/finance etc.
I’m 62 and have been moderate to severe with ME or whatever this is and believe it started in my teens and am so very desperate to feel even 20% better.
Will I/we ever get the help we need.
I am very grateful to Professor Ron Davis and team for all their work. ME is a nasty insidious puzzle and it’s shameful that our Governments won’t find adequate funding. There are so many people now suffering with Long Covid which shares many similarities with ME.
Thanks to you also Janet Dafoe. I feel you may be our only hope.
🙏🏻😊🥰🙅♀️🙅♀️
@@sallysampson628list my mum to severe ms my father has CFS to but better at 75 than 49 I've had CFS 27 years fybromyalgia 6 or part if CFS MRIs clear found out why I have autism as my late mother heds undiagnosed.my father has ADHD causation for CFS to rccx gene theory my son's now diagnosed ADHD autism fatigue symptoms no pain yet at 13 get checked for these
Thank you both for your tireless efforts. Ron, love that you have made your own Compaxone to experiment with. We call this the No. 8 Wire approach down here in New Zealand. Where there is a will, there is a way!
I'm fascinated by this, as I've been more than a little concerned that when I flare, the pain I experience is nerve pain and have wondered if my myelin is being damaged. In my very first MECFS episode I thought must have cancer in my hip. I couldn't stand lying on it and whenever I flare the same pain sites erupt. It's like a fire at these sites. I also felt like I had had a stroke down my right side as things were just shaky and not my normal ... but as you know, standard tests showed nothing.
The biggest frustration we all face, is that it's tough to walk into your primary care doctor and ask for a MS work up based on a new possibility. I'm sure they 'roll their eyes out loud' when I walk in the door, but if they only knew what it feels like to live in an MECFS body.
I'm 9 years on from the beginning of my MECFS journey and have recovered remarkably, but not fully.
It's slightly terrifying to wonder if something is going to smash me back to the state I was in the first couple of years. I live in hope that beautiful souls like you will crack this thing and am forever grateful that you keep going.
I was tentatively diagnosed with MS via a MRI. Bizarre as I only saw this diagnosis as a note to another physician asking a benign way to tell ME the patient. Odd no one ever told me.
Diagnosed with CFS-ME .
Have you talked to prof Jonas Bergqvist about this?
If I remember right, he had found an autoantibody in the blood of ME/CFS patients, that MS-patients has as well.
However, MS patients has it in CNS, and ME/CFS only have it in the blood.
Dr Jonas said it was a good thing, it can be washed out of the blood, but not out of the brain... If I remember right... 😊
And thankyou so, so much for all your work!
Thanks to you guys, there is a big International organisation doing research on ME/CFS today!
You two started OMF, and the openness, and the information you have shared, has been my hope, and the light in the end of the tunnel.
Thankyou! 🙏❤🙏❤🙏
Hi, I was diagnosed with Remitting and Relapsing MS a few years prior my diagnosis of ME/CFS in 2023. There are cases of both MS and ME/CFS which seem to coexist. Thank you for bringing awareness to this topic.
I'm sitting here crying at this, you are angels. Suffering from ME/CFS since age 14 (had mono at age 12 etc), debilitated, now age 62. Thank you for continuing this work.
Went to high school near a bunch of chemical refineries that didn't follow rules on the outskirts of Houston in late 70s. A person close to me there wound up with MS and told me that many people at our school had had CFS. I had moved back to North Carolina my home state by then after being in other places as well. One a very polluted city, London england. Which debilitated me horribly and that's when I really went downhill starting age 19.
He, a youthful & robust man by nature, died of MS in a nursing home later, despondent, alone, age 61, after years of traumatic struggle, self-advocacy, debilitation and decline.
Bless you as you look through the facades, the veils, the medical industry, and through the cracks to see the light at the end of these tunnels. I can barely speak I'm in tears.
Thank you so much for subtitles. Now my severely ill daughter will be able to see screenshots I make for her.
The sweaters was the first thing I noticed! I live in Denmark, but I am Norwegian and I love my lusekofte 🙂
Amazing that Dr Davis is following the same path as doctors did back in 1986 in comparing the mystery illness (years before it was named CFS) to MS.
Page 54. Osler's Web.
Nice Norwegian wool sweaters!
Thank you both for your continued efforts and for your research, Dr. Davis. This has come at an interesting time as my neurologist recently looked back on my old MRI imaging and noticed what appears to be a small lesion on my cervical spine. What adds to the complexity of this is that mold mycotoxins can cause neurological damage to the myelin sheath (so I've read). I certainly present similar to MS, but I most definitely fit the criteria for CFS.
Anyone feeling a little bit distressed that every update they give is an entirely different theory? What is going on with the Metabolic Trap?
This is very much case since I became ME in 1991. I remember queuing outside internet cafe to look up “latest cure” before we all had hi fi. Lot of ppl getting rich on “How to Cure ME” courses.
So what does that mean for the Itaconate Shunt or the WASF3 NIH study? ME/CFS research is all over the place... one month its one pathway causing it and then one month is a different one. I don't get it.
@@adrenalinejunkie3828yeah thats exactly why it wont be cured anytime soon 😂
They don t know the cause of CFS.
I think the MS Theory is right because my CFS startet after i kissed a girl with MS. ( didnt know that she had ms )
@@motherf6969yeah right. ME/CFS or MS is not transmissible. Total BS
@@mattx6098 thats right ! , but maybe the cause of it ...
The Virus or Infection ! Think about it.
@@mattx6098the cause is autism ADHD heds lost my mum to severe ms I have fybromyalgia CFS my father has CFS all his sister's have it rccx gene theory
Thank you SO much for everything that you both do!!
Happy New Year!
Thank you so very much for the hope spending information you shared! Happy, healthy new year for both of you, Whitney and your whole family! 🫶
Thank you both for all your work i have tried to help over the years with small donations.
I got sick when toxic chemicals crossed the placenta that my parents worked with when i was a foetus in 1950..i have hEds, MECFS, Fibromyalgia & 3 major neuro problems since birth...no help from docs so became my own doc at age 13 via library books...survived a brain aneurysm haemorrhage too..9mm of 12 has ruptured 3mm now 5mm pending rupture...
Please find us a cure & thank you for all you do...xxx
I have heds fybromyalgia cfs lost my mum last year to severe ms heds we have asperger's to causation my grandfather had heds to and his mother grandmother and all had autism so I can date it back to 1860 all have OCD my son now diagnosed autism ADHD ocd
I think what those MS specialists (which Ron mentioned) ment was ME/CFS is a diagnosis of exclusion (currently), which means if you have MS, then you have MS, not ME.
I read about capaxone years ago and I understand the number of amino acids randomely arainged and the poss of alergic reactions due to these random arrangements. thank you both Your heros to so many.
Thank you so for this update! I know you must both be so busy. I'm fortunate to have good support at home, but this illness is so pernicious and soul-sapping. I have a severe case and my adult daughter has it as well. Signs of progress toward new treatments lift my spirits.
I have CFS too and couchbound. I really got worse when I took many antibiotics for a couple of years. The theory of holistic medicine is dysbiosis and leaky gut. The problem is I have MCAs/histamine intolerance too so I don’t tolerate any meds. Some people who have not severe CFS can tolerate probiotics and it really helps them a lot. They said increased intestinal permeability is the caused of all autoimmune diseases. I get a bit better with TA 1 peptide but I developed sensitivity to it like having migraines.
But I pray we quickly find a treatment for it and improve even just by 50%. So no drug companies are doing a research on this? It’s so sad. If MS can be treated, maybe CFS can be treated too.
Some people who have long Covid have gut issues too and 80% of immune system is in the gut.
TTFD and Benfetoamine might help with gut issues and fatigue
@@robertdeheer1307 Hallo, was ist TTFD?
Thank you Ron and Janet 💙
I loved the comment near the end of the video, about “shutting down ME” because when I got ME, it felt exactly like someone had flipped off a switch in my body, which permitted all hell to be physically unleashed on me! If only we could go back in time, to when I was alive & find that switch & turn it back on!! It was 14 years ago on 12/24/09 when I got the worst flu I’d ever had, despite being vaccinated for the seasonal flu & H1N1 (a requirement since I’m an RN)!
Once that flu started weeks passed by & I couldn’t get better! Finally 6-7 weeks later, some of the flu symptoms began abating, but a new laundry list of symptoms were randomly being added! Severe fatigue, weakness & the strange heaviness in my extremities persisted, making it feel like lifting a thousand pounds to take a step or raise my arms. Orthostatic intolerance confined me to a recliner & standing in the shower made me dizzy & my feet turned purple. My hands & feet always felt painfully cold & I developed Reynaud’s syndrome along with the onset of multiple inflammatory conditions like: costal costochondritis, followed by cystitis- a painful inflammatory bladder condition that eventually resolved on its own- thank God! Then carpal tunnel syndrome, a frozen right thumb joint & an inflammatory knee condition- with all 3 requiring surgery during the first year I was sick!
Despite previously bicycling 200 miles weekly for over 10 years, now at 51 years old, I was suddenly, severely short of breath doing the simplest activities & even at rest at times! Simply taking a bath wipes me out-so I can only tolerate it one to two times weekly! I had photophobia- stabbing eye pain, nausea, loss of taste, poor appetite & a sudden aversion to certain foods & all meat & alcohol products- even a TV commercial about alcohol induced nausea! Large amounts of my hair were falling out across my entire head, drenching sweats- required pajama changes hourly at times, rashes, sleep dysregulation (ranging from not being able to remain asleep more than two hours to sleeping for several days & circadian rhythm reversal), brain fog set in & I could only describe it by saying, “something is wrong with me, I can’t think!” A sore, red throat & weak, hoarse voice lasted for 10 years & probably a dozen other things I can’t think of right now!
I’d describe the onset of ME, as feeling like you’re an eagle soaring through brilliant, blue skies(with a occasional clouds, of course), then suddenly, out of nowhere, someone shoots you down in mid-flight!! Sadly, decades have passed, with no one looking for the shooter- instead they’ve attacked the eagles for not flying anymore! God bless you for your efforts in behalf of this patient population! I am praying someone will find the master-switch that was flipped in our bodies when we were hit by the flu!
I like the eagle / shooter analogy - works well.
You guys are the best! Thank you!
I love the jumpers! I was thinking, they look Norwegian. Kjipt at jeg ikke var i Norge da dere var på besøk. Neste gang :)
As Norwegian also, I was thinking the same.
And why don't they think in terms that one viral infection can lodge in the body in different places, in different ways, and most importantly to present in two different ways?!
I was a science major in school but too ill to finish to get my biochemistry degree. Am I making sense? I know I make more sense than they do. Most of us do!
Thank you so much at the end here for extrapolating this to the idea that this is happening with other diseases in other ways. That's the only logical, ie intelligently holistic, way to think about this or most anything.
Happy New Year Janet and Ron!
Ron is obvious sincere in his motive and character, hes got to be one of the best at conventional medicine, I just feel like conventional medicine is misguided and ineffective, and thats why we aren't getting anywhere with figuring out ME/CFS.
Misguided is ,to me, a huge understatement
Ron doesn’t do any kind of medicine. He’s not an MD. He’s a research PhD scientist. Most certainly not in any conventional medicine box.
@@janetld sure but in his official position hes not going to be allowed to stray too far from the ideological reservation and the outcomes big pharma is looking for, or they try to not publish the research or withold the funding or remove people from their job positions. For a window into different perspectives I would recommend to read the books of Dr Tom Cowan.
Ron’s work is not constrained in this manner. Not true.
@@roonbooks3227you sort it out then
I think you need to show how common these antibodies are in non ME/CFS patients.
Do ya reckon you can hurry the F up??
very cool sweaters by the way
sound too low....near microphone needed, ty
I read the captions or I would have been stuck!
I have ME and the worst thing for me is people who think we are weak willed and scared of exercise
Ive been unwell 27 years 😢.
Thank you so much!
At age 21 I suddenly lost use of my legs for about 30 hours. I was told after 2day stay in neurological unit that I had isolated episode of MS. I had no more problems over years except reacting strongly to flu jabs but in 1991 I took what was diagnosed as severe ME and have only recovered about 50% over years. In 1990s there was no definitive test for MS (so I was told). I have had no treatment for ME but use pacing as much as is possible and so lead very energy managed life, working part time and prioritising rest.
Thank you
Please work in collaboration with Asha therapeutics! They're working on CFS drugs too.
Thanks to both of you for this video and info. It does give baby steps of hope.
I wish to god i could get to Stanford for some studies. I believe you might find i have some unique issues and test results. I wonder how many ME patients have polyclonal hypergammaglobulinemia AND selective IGA deficiency plus almost non-existent IGM. So so many of us are a complete puzzlement to our doctors who cant wait to get us out of their offices. As you both say, complicated just ain't worth the time. 😢
Thank you so much for the work you do, and for sharing about it here! You look so good in Norwegian sweaters too, it's like you're from here 😁👋🏻
You are inspiring. Ive lost hope of finding anything to help me in my lifetime. But i hope for all those suffering that they can find relief. Especially young people whose lives have been so robbed. The sweaters are lovely.
I would try it immediately and would like to tell you about the results. To visit an MS special center, I would need many more spoons than I have available. I think my MD should be able to do an antibody test too, right? Could you please be so kind as to tell me the name of the antibody so that I can ask my MD? Thank you very much for everything you do!
I have had M.E for 28 years l am a74 year old male a few years ago l managed to obtain the painkiller nubain for osteoarthritis l used this for about 6 years after a few weeks l felt so much better it helped it really helped the foggy head and most of the other symptoms but unfortunately lost my contact M.E returned pre nubain days alan in the U.K
It must be so disheartening to lose your access to Nubain when it clearly worked for you. As it's an opioid, few doctors would be likely to prescribe it because of its addictive qualities. Honestly, we get to an age and stage of debilitating chronic illness and pain...and really don't care if we're addicted or not. It helps! It makes our lives so much better and most of us would use it responsibly. I've had ME for 28 years, too. Hi from Australia.
@@melindajensen9881 thank you so much for your lovely message, I have written to professor Ron Davis in America about the Nubain and waiting to see if I get a reply, I do take Tramadol from the doctor for arthritis in the spine and I do think is helps a little bit for the M.E take care and all the best Alan from the U.K
@@melindajensen9881I've had 27 years since 17 pain is now my worst symptom.lost my mum to severe ms we both have heds autism my father has CFS to
My doctor told me that me/cfs causes problems with acetylcholine in the brain and that 2mg nicotine gum can help. I’m trying it now
Many patients find nicotine patches more effective than gum
Dosage is 7 mg patch worn during the day. May also be used for covid.
@@andocobo
@@andocobodoes it help pain
صور الدماغ الشرايين والوعيه بل رنين الملون تلاحض شرايين مسدده واوعيه ضيقه لا يوصل الدم بشكل جيد لنحاء الجسم مما يدي كل هاذهي العراض دكتور بل الا ردن استكشف هاذهي العراض الي اعاني منها متذو سنين
Dr Ron,you need to do something crazy here,to figure this out!! I got a feelin,it's another 30-40 years away!!
Gracias.
Girl living in a house develops MS. 6 months later another person moves into the same house as well. Develop what they think is MS (then said CFS/ME abd MS) Both still living there together.
Second persons moves out and recovers. First person stays and becomes severe case. More donations should be given to people who want to leave their environment but can't due to financial issues instead of giving it to the round and round and round research of the Open Medicine Foundation which is actually getting nowhere. Three ladies living on the same street three become wheelchair bound. One person leaves that location and recovers. The other two are still in the location and still wheelchair bound. Have story after story of people getting out of a location and recovering and all others stay and never to this day have recovered.
Mycotoxin exposure???
Could be mycotoxins. Could also be that the less severe cases tend to be more like to leave a place than those who are too sick.
Yes would like to no if they have autism or heds as I have this exposed to mold and we don't have detox pathways
Wow I'm so glad I'm finally here! My Rheumatologist put me onto a website called Rising Health which lead me to the video Janet & Rob did on the Itaconate Shunt, fabulous by the way ❤Currently bed ridden with extreme PEM I decided to watch it, the next to pop up was this little beauty. I live in Melbourne Australia & am excited to hear an Aussie is part of the team. I had Epstein Barr virus at around age 14-15, parents sent me back to school after a couple of weeks in bed. Now I understand more about the illness I can see I have been struggling with ME for most of my life. I wasn't diagnosed until 2018 at the age of 45. All those years with this crippling illness. I have often wondered with more recent decline in cognitive function if I also had MS? I put that thought aside as I knew what every GP & Specialist would say "You're Bat Shit Crazy" & point me to the door. In 2022 I started to notice a shape decline in cognitive function. After typing I would read what looked like some weird foreign language on the page. My brain would be saying one thing but I would type something that was unreadable. I'm going to speak to my current GP about the possible connection to MS & ME/CFS as he will be open to this possibility & I'll keep you posted if we find anything on a MRI scan for MS. I'm deeply curious to see what might show up. Although I am also going through rather extreme menopause, thanks to a pre existing Adenomyosis, & that could explain the shape decline in cognitive function. Actually I have a question to ask about any connections with menopause & ME/CFS & also the higher numbers of female patients with ME/CFS? I am connected up with EMERGE Australia & the numbers tell a very interesting story, 75% of ME/CFS people are female here in AUS. Has anyone else found the same in their part of the world? Apologies in advance for the essay size comment..........FYI I typed this in word first to make sure it all made sense lol.......there were many ME/CFS brain fart moments & this comment took me 3 days to do🤣
Thank you. ❤
The two-diseases thing sounds surprisingly dumb, especially considering that both diseases aren't even understood yet in terms of their pathogenic pathways.
Having fluctuating voltage in a house can totally lead to flickering of one TV and cold water in another room. It simply depends on the wires and the robustness of the systems that have to deal with the voltage changes.
Well, good luck with everything!
can the Drs. or someone on here tell me if fibromyalgia and or ME CFS is recognized by any medical profession as being a neurological disease or syndrome can you refer my to any such literature would be helpful thank you from Canada
In 2019 I was dx w psoriatic arthritis then had covid in 2021 and mostly struggle w chronic fatigue. HCQ seems to help some as I tried stopping it once. Not sure what is what but it is pretty life altering. A person is pretty much on their own w this stuff. Thanks for the info.
Has HCQ helped reduce your PsA symptoms? (I have PsA, and no drugs)
E
Hey you guys, could you please specify what test results from patients you are looking for? No one seems to really understand from what Ihe heard from patients. Thanks!
Hurry up!!
Can someone summarize this for me pls
Raising hand …..in Oakland
❤
Thanks for all you folks do . Had ME since a bad case of Mono in 1987. I've recovered over the years but have never been healthy since 1987.
Maybe it's just coincidence but my wife was diagnosed with MS 7 years ago.
Also I should add her MS doctor wants to treat her with Copaxone soon as soon as she can taper off prednisone
No coincidence it's rccx gene theory linked to autism.adhd heds.list my mum to severe ms last year father had CFS lot better at 75 than 49 I have CFS fybromyalgia 27 years
I’ve had CFS after having my second child in 1994 and having Glandular fever. It returned on and off (never as bad as the first), although after an emotional time, it hit me again in 2022. After having COVID jab (I never had COVID) & a stomach bug. Bloods showed my innate immune system was activated. I did what I did last time, which was to eat as healthily as I could, exercise regularly, but not overdo it. CFS just got worse. So went to the doctor again. He confirmed that I was healthy, my oxygen sats were good despite having bronchectsis. However, had high inflammation (CRP & ESR), also had RF, so was diagnosed with Rheumatoid Arthritis. I actually got referred to a CF unit in between, which took a year to get an appointment (NHS in UK), but when they found out about my RA diagnosis, they could not treat my CFS 😮. Ridiculous!
Hi, I'm also in the UK, can I ask how you got referred on the NHS and what they did for CFS. My gp says there's nothing they can do
@@NG-sx9pwNHS CFS London you have to find them yourself they can't be arsed in NHS terrible are you hypermobile
I wonder if it would work in reverse… an autoimmune disease triggers ME/CFS?
How would this drug help Post-exertional symptom exacerbation, the hallmark of ME?
The clue to post exacerbation malaise is as far as possible to stick to your energy envelope. It’s as if the overused muscle/brain releases the component that causes the symptoms. Don’t do it. Easy said but if you are bowing to pressure, not easy to do.
Would LDN help with this?
I take ldn helps fatigue but not pain
@@Truerealism747 , thanks for that info. Although I do have pain, weird pain, I’m lucky that it’s not usually dominant for me. Severe fatigue is my biggest issue. Since I asked that, I’ve found a channel related to a Neuro inflammation lab at UAB. One of the things the guy is looking into is dextronaltrexone which might allow people to be helped that aren’t helped by low-dose naltrexone. Because it looks like it won’t have the same side effects, you can take a higher dose. But it does the same beneficial thing. It’s Dr Younger.
❤️❤️❤️
Is a GP could prescribe this medication to a MS person ? I'm from Montreal, Quebec.
DIOS BENDIGA Y CONSUELE Y AYUDE A TODOS LOS ENFERMOS DE EM/FCS Y A LOS MÉDICOS QUE ESTUDIAN INCANSABLEMENTE.
I was dx with pots me /cfs/ chronic pain syndrome and I have lots of punctuate lesions which an MS specialist said was not MS but from ischemia and or migraines.... Interesting. Also I have 2 aunts who actually do have MS, one takes copaxone.. Wondering if COMT gene and low BDNF play a factor
Are they hypermobile lost my mum to severe ms heds autism I have heds autism ADHD ocd big link to my father has CFS ADHD rccx gene theory in action
Were they seen on normal mri
@@Truerealism747 I'm assuming . I don't really know MRi differences..Also we have hypermobility
@@lessons9745I mean without contrast dye
'Cognitive' is not a synonym for 'mental'. The mental problems such as brain fog, which ME/CFS patients suffer is not limited to cognitive functions. Please get this right.
Could the treatment help fibromyalgia patients? They have now identified the fibromyalgia protein , Could a protein tigger three diseases?
What protein is it
🫶
I have symptoms of both M.S.& ME/CFS.Since my difficulty arose after a complicated Cytokine Storm,I’ve always been disappointed with the One disease only idea. I’ve heard from expert Researchers that M. S. Often takes a long time to develop .May you continue to be inspired- know of our deep appreciation 💞💪🙏
Lost my.mum to severe.ms my father has CFS no ms I have heds autism autism us the link I've had symptoms since 17 now 44 scans clear at present
Why do me/cfs patients with MS like symptoms typically not show CNS lesions.
Be sure not ms
What do you think about the cases that healed or got better from brain retraining?
And about LDN?
My group calls brain retraining snake oil! I tried LDN. For three years without any improvement. Source stopped with covid and no change. Saved myself £60 month!
Hi Janet, idk who to report this to, or if its completely anecdotal, but last month i felt pretty good! and the only thing i did different was make maple fudge for gifts, and of course ate little pieces along the way, basically sugar and fat, so i looked up a few things and apparently the brain NEEDS glucose all the time and thats how it signals the body to make ATP and mitochondria energy.
any woo, ive been eating small bits of fudge thoughout the day since then and still feel great! i was severe.
idk if yall can look into this sugar/mitochrondria thing cuz i cant eat fudge forever, (altho tempting)
perhaps the EBarr virus attacks the glucose regulation/production?
Concerning your new discovery Ron, i have often wondered if CFS is some kind of MS - like disease, or a subset of it.
i have many of the symptoms but MRI said nothing yrs ago.
I know there is sadness along with what is perhaps your greatest breakthrough discovery on this, but you have helped a LOT of us out here suffering AND being abused FOR suffering by the typical medical field.
Sending heart hugs of thanks to both of you🫂💜
Thank you so much Ron & Janet for your dedication and hard work .It means so much that you are very patient orientated and keep us informed .
You give me a lot of hope as i have severe M.E I've not been tested for MS ,Not easy to access anything for M.E in the UK. 🫶
agreed, I am in the U.K. too and it is so much worse since the C~vid regime began. Take care and don't lose hope.