Are you insane ? Yeah thats just what we need. More people acting like this disease is mental and that therapy can cure it. And when I say people I mostly mean doctors. That ruins lives and you can study that AFTER this disease is established and patients stop getting abused by the healthcare system.
🌺THANK YOU ALL🌺so very much🌺for your ongoing Research into M.E/cfs,the Forgotten, the "Missing Millions".🔴Please WORLD it is our time after SO Long, to be supported & funded.🌺M.E is a life changing, Devastating & untreatable Disease🌺
Looking forward to this! I literally wrote to Biden about the need for research with this condition. I was diagnosed in 2005 and would love a cure. It’s been a long journey going through this.
Thank you dr. Bergquist for your work. We understand that only so much can be done with limited funding and that it is on our community to do much more and make the change by forcing politicians to start funding a research.
My biggest take away as a TLDR: Dr Jonas Bergquist presenting why it's a good thing that no autoantibodies were found in the CSF (cerebral spinal fluid) of ME/CFS patients. Basically, immuno-adsorption might be the only way to treat/remove autoantibodies, which is not very possible when those aabs are inside the brain.
@@garosama4517 that's not quite what he is saying. Research has not found the autoantibodies in ME to be within the brain, which is better than the alternative in terms of treatment capability.
These findings certainly sound very promising. 🙏❤ I have been very ME-sick since 2009, so it would be absolutely wonderful if dr. Bergquist and his research team could develop a treatment that could cure us entirely. That is what we have been dreaming of and praying for every day since we contracted this illness: getting our health and lifes back. Imagine that: being able to work again, visiting friends and family again, traveling again, doing sports again - and all the other things we used to do, which we previously took for granted.
@@Jamal287 they know a lot about this disease, but nothing happens. We all know that CNS dysfunction is the core. I guess finding a biomarker is tough, since ME doesn't destroy organic tissue like MS for example
@@vanessalele3953 CNS may be the symptom but I now think the root cause is related to polio re Byron Hyde book. I comport perfectly yet little research is happening.
I really hope Dr Bergqvist will continue even though the Swedish government has decided to close the ME-clinic were he works. It is such a tragedy that ppl in Sweden sick with ME now has no specialists to turn to! Because of this it is extra comforting for me as a sick person in sweden to see another swedish person studying this!❤
I love hearing from Upssula, they do some super interesting research. Looking forward to hearing updates in the future. I wondered whether it would be doable to hear about any kind of time lines with the various studies we hear about, big ask I know. I appreciate that research in't generally something that really works to timelines, because there are so very many variables, but would there be a way to share any sort of vague approximations for when different bits of research are hoping to conclude, or even just roughly how long they might be going for? I keep an eye on the OMF website and read the bits and pieces about the various studies going on in all the different places with great pleasure, but nobody ever says how long these studies are sort of meant for....like are they meant to run for a few months, a year or a few years? I'm not suggesting that hearing about the exact specifics is doable, but maybe just rough ball parks.....eg This study is aiming to take place over the next 3 years and hopefully, if everything goes to plan in the world, will look to maybe publish some time after 2025....or something along those lines. I'd absolutely love to know more about how things are progressing in that way.
Hi there! Thanks so much for the feedback - we are currently working on getting these study web pages updated, and will share with the community as soon as it is complete!
I'll tell you where you DON'T sign up - by commenting on youtube posts. :P I'd get in touch with the doctor himself, somehow. Having an official diagnosis probably helps as well. Wish you the best.
Hi Chris! OMF is not typically involved in the research volunteer recruitment process. Our role is to ensure that each CRC has the financial resources required to conduct critical research into ME/CFS and related chronic, complex diseases. Each CRC operates independently and recruits research participants from clinicians that they collaborate with locally. CRCs are not able to respond to inquiries from the general public. When OMF seeks participants in any data gathering research project, we will email those requests to our entire community. If you don’t already receive email updates from OMF, you can sign up here: app.etapestry.com/onlineforms/OMF/signup.html
@@gypsypath1 We generally try to respond to all comments. We have a small team and sometimes we cannot reply to every individual Comment, but we do try our best! 😊
Amazing presentation! Does anyone knows which cells (B cells / Memory B cells / Plasma-cells) are responsible for the production of Beta Adrenergic and Muscarin Cholinergic autoantibodies?
I've had this since about 1997 following a re-activation of mononucleosis. At this point, the worst part of it is exercise intolerance, brain fog, and profound fatigue. I'd love to participate in a clinical trial.
It would be good if you provided a layman's breakdown on these videos for ordinary non medical people. Some of the language is so far beyond the scope of most people. But a lot of people who watch these, including me, are sufferers looking for updates on the progress of finding some kind of cure. Having an A level in human biology helps me (a little) but neice, who also has it, would not understand most of what's being talked about. That's a shame!
It must also be mentioned that many people suffering from M.E./CFS also can have difficulty in processing information. I had 2 years of chemistry, biochemistry, a year of university biology, and at least 10 years of following this topic. I can barely process much of what is said if it is highly technical. I tend to watch good lectures several times. To be fair, the subject is so complicated that most medical doctors don't really understand it either. I have seen one specialist in 22 years who actually seemed to understand what is going on.
@@davidallison5529 One of the most frustrating parts of the disease, to say the least! I have always thought if only I could get one element back, either my brain or my body, then I could achieve at least something. If I could get my brain function back I could study, be a serial scholar. However, if my seemingly abstract organ; my brain, must stay elusive then to have the use of my body so I could work a menial job, let alone the thought of rejoining sports. Just something to wrap my ego around. To fit into societal norms again to some degree would be life changing. Anyway, that developed into quite a rant - apologies. Nobody asked for any of it and yet there it is. Haha.
@@-brooke. Id pick Brain now that Ive confirmed it controls all else. I need muscle which is lost in a polio pattern exactly as Dr Byron Hyde book describes. Polio
I chased up that alley for years to no avail whatsoever. I spent many thousands on testing, remediation, and therapies. I keep coming back to Dr Byron Hyde author of Understanding Myalgic Encephalomyelitis. He is getting up in his 80s with nobody apparently picking up on his research how ME tracks Polio all along. Only his description comports with my ME perfectly. Both cause and symptoms fit. A SPECT brain scan shows the damage. I now focus on the brain as it also controls all the muscles, organs, cns etc. After extensive testing and living in homes on both coasts, deserts, and dry mtns, and as an architectural designer-builder Ive now ruled out mold as a root cause. It definitely aggravates some however. So do many plants. Huge revelation was doing a carnivore diet for a full calendar year as Ive done with many diets. Im now ruminant-based diet with only a few cleared plant families like squashes, stevia, berries and fruits but very specifically… also midday sun enough to retain a tan year round is crucial, the IFR light gives energy and takes pain. Im writing a book but with ME its still a slow process. Pre-ruminant period I could not even find nor watch yt videos or read. Slowly but surely catching up on bits of life now. 10% is twice the life that 5% was for a decade.
No but the detox pathways in us are different than general population the reason being alot of us have ADHD autism and hypomobility it's around 70 percent
Looking forward to this.Thank you to ALL involved in the urgent race for a diagnostic, & treatment of M.E.Such a devastating disease🥀.
He's always an excellent and entertaining speaker! Hope he discusses his paper about the parallels between ME and trauma patients.
Are you insane ? Yeah thats just what we need. More people acting like this disease is mental and that therapy can cure it. And when I say people I mostly mean doctors. That ruins lives and you can study that AFTER this disease is established and patients stop getting abused by the healthcare system.
🌺THANK YOU ALL🌺so very much🌺for your ongoing Research into M.E/cfs,the Forgotten, the "Missing Millions".🔴Please WORLD it is our time after SO Long, to be supported & funded.🌺M.E is a life changing, Devastating & untreatable Disease🌺
You're all amazing & invaluable in the fight for ME/cfs.thank you very much.
Looking forward to this! I literally wrote to Biden about the need for research with this condition. I was diagnosed in 2005 and would love a cure. It’s been a long journey going through this.
Write your senators.
Biden is an actor in a Biden mask!
Thank you dr. Bergquist for your work. We understand that only so much can be done with limited funding and that it is on our community to do much more and make the change by forcing politicians to start funding a research.
My biggest take away as a TLDR:
Dr Jonas Bergquist presenting why it's a good thing that no autoantibodies were found in the CSF (cerebral spinal fluid) of ME/CFS patients. Basically, immuno-adsorption might be the only way to treat/remove autoantibodies, which is not very possible when those aabs are inside the brain.
So, isn't that a bad thing? I mean, how is it a good thing if autoantibodies are in the brain where you can't reach them? Why does he say thats good?
@@garosama4517 that's not quite what he is saying. Research has not found the autoantibodies in ME to be within the brain, which is better than the alternative in terms of treatment capability.
@@DontStealMyBacon okay....so the only treatment plan is immunoabsortion i guess?
Thank you Dr. Bergquist
Thank you for the update, Dr. Bergquist.
These findings certainly sound very promising. 🙏❤
I have been very ME-sick since 2009, so it would be absolutely wonderful if dr. Bergquist and his research team could develop a treatment that could cure us entirely. That is what we have been dreaming of and praying for every day since we contracted this illness: getting our health and lifes back.
Imagine that: being able to work again, visiting friends and family again, traveling again, doing sports again - and all the other things we used to do, which we previously took for granted.
We are hearing for 14 years that that we have a brrakthrough, but still no biomarker!
Yeah, i don't get it at all. Whats happening here?
@@vanessalele3953 They don't know... Point zero
@@Jamal287 they know a lot about this disease, but nothing happens. We all know that CNS dysfunction is the core.
I guess finding a biomarker is tough, since ME doesn't destroy organic tissue like MS for example
@@vanessalele3953 I don't know if that is true. But u seem well educated on the topic. I wrote a book. Maybe we can get in touch thru other channels?
@@vanessalele3953 CNS may be the symptom but I now think the root cause is related to polio re Byron Hyde book. I comport perfectly yet little research is happening.
I really hope Dr Bergqvist will continue even though the Swedish government has decided to close the ME-clinic were he works. It is such a tragedy that ppl in Sweden sick with ME now has no specialists to turn to! Because of this it is extra comforting for me as a sick person in sweden to see another swedish person studying this!❤
I love hearing from Upssula, they do some super interesting research. Looking forward to hearing updates in the future.
I wondered whether it would be doable to hear about any kind of time lines with the various studies we hear about, big ask I know. I appreciate that research in't generally something that really works to timelines, because there are so very many variables, but would there be a way to share any sort of vague approximations for when different bits of research are hoping to conclude, or even just roughly how long they might be going for?
I keep an eye on the OMF website and read the bits and pieces about the various studies going on in all the different places with great pleasure, but nobody ever says how long these studies are sort of meant for....like are they meant to run for a few months, a year or a few years? I'm not suggesting that hearing about the exact specifics is doable, but maybe just rough ball parks.....eg This study is aiming to take place over the next 3 years and hopefully, if everything goes to plan in the world, will look to maybe publish some time after 2025....or something along those lines. I'd absolutely love to know more about how things are progressing in that way.
Hi there! Thanks so much for the feedback - we are currently working on getting these study web pages updated, and will share with the community as soon as it is complete!
I live near uppsala and have had ME/CFS since 2016 and would like to apply to medical trials and testing at uppsala univesity. Where do I sign? :o
I'll tell you where you DON'T sign up - by commenting on youtube posts. :P I'd get in touch with the doctor himself, somehow. Having an official diagnosis probably helps as well. Wish you the best.
@@aVataR_ehyeh That’s probably what the OP was trying to do, in the vain hope that the uploaded would read the few comments and actually respond.
Hi Chris!
OMF is not typically involved in the research volunteer recruitment process. Our role is to ensure that each CRC has the financial resources required to conduct critical research into ME/CFS and related chronic, complex diseases.
Each CRC operates independently and recruits research participants from clinicians that they collaborate with locally. CRCs are not able to respond to inquiries from the general public.
When OMF seeks participants in any data gathering research project, we will email those requests to our entire community. If you don’t already receive email updates from OMF, you can sign up here: app.etapestry.com/onlineforms/OMF/signup.html
@@gypsypath1 We generally try to respond to all comments. We have a small team and sometimes we cannot reply to every individual
Comment, but we do try our best! 😊
Does he talk about the Kynurenine Trial in this? If so at what time?
I want to know this too
But what about Kynurenine trial that Dr Berquist had to conduct a year ago?! Everybody's silent about it like it had never been planned at all!
We don't hear anything from Ron Davis anymore about that either. Dafuq is happening here?
Amazing presentation! Does anyone knows which cells (B cells / Memory B cells / Plasma-cells) are responsible for the production of Beta Adrenergic and Muscarin Cholinergic autoantibodies?
I've had this since about 1997 following a re-activation of mononucleosis. At this point, the worst part of it is exercise intolerance, brain fog, and profound fatigue. I'd love to participate in a clinical trial.
S y pain
@@Truerealism747 ?
It would be good if you provided a layman's breakdown on these videos for ordinary non medical people. Some of the language is so far beyond the scope of most people. But a lot of people who watch these, including me, are sufferers looking for updates on the progress of finding some kind of cure. Having an A level in human biology helps me (a little) but neice, who also has it, would not understand most of what's being talked about. That's a shame!
It must also be mentioned that many people suffering from M.E./CFS also can have difficulty in processing information. I had 2 years of chemistry, biochemistry, a year of university biology, and at least 10 years of following this topic. I can barely process much of what is said if it is highly technical. I tend to watch good lectures several times.
To be fair, the subject is so complicated that most medical doctors don't really understand it either. I have seen one specialist in 22 years who actually seemed to understand what is going on.
@@davidallison5529 One of the most frustrating parts of the disease, to say the least! I have always thought if only I could get one element back, either my brain or my body, then I could achieve at least something.
If I could get my brain function back I could study, be a serial scholar. However, if my seemingly abstract organ; my brain, must stay elusive then to have the use of my body so I could work a menial job, let alone the thought of rejoining sports. Just something to wrap my ego around. To fit into societal norms again to some degree would be life changing.
Anyway, that developed into quite a rant - apologies. Nobody asked for any of it and yet there it is. Haha.
@@-brooke. Id pick Brain now that Ive confirmed it controls all else. I need muscle which is lost in a polio pattern exactly as Dr Byron Hyde book describes. Polio
So how close are they to a bio marker?
When the truth comes out!
A lot are now Positive for Autoimmune Encephalitis markers, could this be the Cause?
❤❤❤
Is he saying that plasmapheresis won't work if you have autoantibodies in your CSF?
I’m looking forward to the Med beds coming soon! Tesla quantum healing Technology and many other hidden technologies!
Is HSE the same or similar to mollarettes meningitis???
We need medication asap. It's a cruel disease!
Mold/Environmental toxicants
Let's not overlook this
I chased up that alley for years to no avail whatsoever. I spent many thousands on testing, remediation, and therapies. I keep coming back to Dr Byron Hyde author of Understanding Myalgic Encephalomyelitis. He is getting up in his 80s with nobody apparently picking up on his research how ME tracks Polio all along. Only his description comports with my ME perfectly. Both cause and symptoms fit. A SPECT brain scan shows the damage. I now focus on the brain as it also controls all the muscles, organs, cns etc. After extensive testing and living in homes on both coasts, deserts, and dry mtns, and as an architectural designer-builder Ive now ruled out mold as a root cause. It definitely aggravates some however. So do many plants. Huge revelation was doing a carnivore diet for a full calendar year as Ive done with many diets. Im now ruminant-based diet with only a few cleared plant families like squashes, stevia, berries and fruits but very specifically… also midday sun enough to retain a tan year round is crucial, the IFR light gives energy and takes pain. Im writing a book but with ME its still a slow process. Pre-ruminant period I could not even find nor watch yt videos or read. Slowly but surely catching up on bits of life now. 10% is twice the life that 5% was for a decade.
No but the detox pathways in us are different than general population the reason being alot of us have ADHD autism and hypomobility it's around 70 percent
The "ME/CFS" gaslighters lol