I had ME/CFS for 8 years. Started slowly at age 61 - I had no idea why I was getting so tired all the time. 3 years going downhill - then looked up Chronic Fatigue and I seemed to have every symptom of ME/CFS. After deteriorating for 3 years, I became bedbound for 4 years. My husband was the one watching me going downhill - I was an athlete - lane swimmer, ice skater and routine Aqua Aerobics. So I had support and a caregiver from the beginning. I still remember the day I became bedbound. I was with my husband and we had to climb some stairs. And I looked at them and said “ I can’t climb them. “ It seems so strange now that I am in recovery. Hard to believe, really. But I became completely bedbound. For 4 years. Then one day, I woke up and thought “ I feel different “. Not a clue why. I never consulted a Doctor - I had read enough about people who were dismissed with ridiculous diagnoses. I had been an RN who trained and worked in a teaching hospital. Had met many incompetent doctors. I had been on anti depressants and anti anxiety meds for years. I knew I was stable enough in that way. I simply read the symptoms and knew what I had. The only things I can remember is at 61, I had a rotator cuff injury and I was under massive stress. I don’t remember having any infection, but my life was upside down, so I probably wouldn’t have noticed. I started taking supplements but no crashes because I couldn’t do anything. How I got ME/CFS and why I recovered remains a mystery to me.
This video just popped up in my UA-cam feed. How great it is to hear about some real science and real research into ME/CFS. I'm so sick of hearing testimonials about the Lightning Process, the Gupta Progam, and other so-called treatments with no scientific basis whatsoover. But this is, sadly, where we're at. People in the ME community grasping at straws because of the huge moral deficit in the U.S. government (and, apparently, the UK government, as well), that results in almost zero funding of our illness. A huge thanks to Ron Davis, Janet Dafoe, and Whitney Dafoe, for all their efforts on our behalf. (I've had ME for over 20 years.)
Avoiding crashes does not cure this disease. If it did I'd have been cured decades ago and it can come back just as easily as it seemed to vanish. Once you've had it you can never be sure it won't come back. At this point there is nothing to stop it from relapsing any time it wants to, even 30 years later you are not absolutely safe. It is awful but I'm very thankful that we have good people like Dr. Davis on our side. Thank you again.
I forgot to add that CFS needs no reason to return. If anyone disagrees with this I'd love to hear about it. We need all the info we can get, it all has value.
It's so interesting that when you're in remission it's hard to imagine or remember how bad it was when you were suffering. This may be why it's nearly impossible for a non-CFS victim to imagine what it's like when even people with it can't imagine it.
I find it fascinating that people get periods of remission! I have "better" periods but am still at least 60% loss of function. I seem to have been on a steady decline since getting ill, it's hard to imagine someone being not just improved but better (at least for a time). It must be nerve-wracking never knowing what might trigger a relapse though. Also I think rest is essential but in the way they are speaking of for recovery I think would be pretty much impossible for most people unless we had facilities that helped. Many other illnesses have forced bed rest but most Dr's insist on the opposite so even when we do rest we feel like failures. Just taking away that stigma would be so helpful.
@Mauled By Traitors not really, relapses are pretty common. I was fine last summer, could even drink alcohol and make some parties. Now i am bedridden again, because EBV reactivated.
Are you looking into BC 007 from Berlin Cures (Germany)? It has relieved 4 long covid patients from their symptoms. It removes the autoantibodies found in long covid as well as ME/CFS patients. Germany has sponsored further studies that should start this year. This might be the answer we have been waiting for
@@MrsBDatCreole As much as we know, some Long Covid patients develop ME/CFS, and that medication cured them from it. After only one infusion. One patient was bedridden and is now healthy.
High dose vit D help my symptoms, most of these being MCAS type of symptoms. When my vit D level rises above 90nmol/l, most of them symptoms are gone. When it rises above 200nmol/l, it helps even more. The more vitamin D and sunshine I get, the harder it is for me to have PEM. What comes to my other symptoms, sunshine helps dremendously. During Winters I am bedbound but after being outside in the sunshine for 2 to 3 months, I feel much better, being able to cook, clean house, do some gardening, go sailing and see friends. But I do get fatigue if I do too much. I know of three other CFS patients who improve with sunshine and my doctor says some of his patients have moved to sunny coast of Spain where their symptoms are far less and quality of life lot better. I live up North in Finland. Also methylcomalamin injections help with my cognitive problems. I have a couple of genemutations in methylation.
I live in Canada and winters have become a real problem for me. Over this last winter I consumed lots of fish fats and forced myself outside on sunny days. My mood was okay but my energy was still much lower than what I feel in summer. I didn't used to have this problem. It really started a few years ago when I began doing fairly strict mold avoidance during the summer months. This is something that a lot of people in the mold avoidance camp report.
Hi, i have me/cfs since my 22 (now i am 30). I have tried so many things, but, what really helped me was probiotics (butyrat) and Probiofix inum, vitamin D a vitamin B9. I think, that problem is somewhere in my gut, but maybe there is something with hormonal system. And I have had tetanic syndrom since 13 years and everything has changed when I got helicobacter pylori. I wish you found what´s wrong and try to help your son and me too...I pray for you.
Thank you so much, as always for any-and-all updates and insights, despite the constancy of roadblocks worthy of the Dark Ages. As much as I would LOVE to have "up, up with people" optimism re: ME research-leading-to-bio-markers-leading-to-treatment; I have been far too sick far too long for that, and it seems clear that "long covid", if studied at all, will be discarded into psychiatric channels just as ME continues to be (almost entirely) to make sure there is never any chance that those of us who came down with the worst flu / glandular fever / etc. of our life at x,y,or z age, then never recovered, will be taken seriously, much less believed, or helped. I will keep giving as much as possible to OMF - the best place for M.E. research progress hope - but, how I wish it could be more!
5:00 She might have had something different. The fact that she could write apps in bed suggests she didn't have the brain fog. I'm not sure I could do that for any sustained time that would productive. Also, I would think writing apps would cause a crash.
Thank-you to you your wife also your Son what a fabulous thing to do also Thank-you to ME Clinics in Sheffield I attended one for 3 months still struggling to manage I was diagnosed 2 years ago been suffering 12 years now
It looks like NICE listened to the outcry about their proposed ME guidelines and amended to something more sane around Oct 2021 (I.e. after this video was made)
@@yiranimal That’s very interesting. I find my cognitive function varies a lot, but usually when I am losing the plot, a half hour of muscular relaxation brings it back. But there are lots of people for whom the cognitive thing is the worst. You say you have no muscle failure, so clearly that suggestion - to rest your muscles to conserve energy for the brain - wouldn’t be helpful for you.
@@nancyblake1679 Just to be clear, I can crash from being physically active as well. I used to work as a personal trainer and was in top shape myself, but I haven't been able to work out for 17 years. But even these physically induced crashes don't show any problem in the muscles themselves. It hits me in the brain with depression and extreme fatigue as primary symptoms. One set of 20 pushups would bring this about, probably even 10. But I can usually walk a few miles without a problem. It's different for everybody. I know people that can read all they want but can't listen to music. This is certainly a brain thing.
I read about the electrical impedance study and the red blood cells, but didn't understand it as well as I do now after they explained it. Interesting and hopeful. Thank you so much for this interview!
Mine tends to be a little on the low side ever since getting sick. Nothing significant but I do find that even at what would be considered a normal temp for healthy people I feel feverish. Its strange.
L.O Simpson, hemorheologist, studied red blood cell deformability in chronic conditions especially ME. He emphasised that blood samples treated the usual way--resting in saline for 30 min-allowed the cells to resume the usual biconcave discocyte shape. If ‘immediately fixed’, the micrograph will show the variety of non-deformable shapes which impede blood-flow in the microcirculation, with consequences in muscle metabolism, cognitive function and the regulatory functions. Could your engineers look at his papers to see how he did his studies?
maybe the lack of dopamine RE abilify could be affecting the negative feedback loops of the speculative HPS axis dysfunction ? great work with the impedance stuff.
Thank you! But strange, Ron's goal as I remember was to try applying some drugs to yiest metabolically trapped and see if it "unblocks the block". No word about it. Just that he moved on onto human cells now.
Degradation of collagen or lack there of: Elhers Danos Syndrome. It’s not a mystery. It’s a genetic condition which can include all of the symptoms of cfs, fibromyalgia, autism spectrum disorders, POTS, MCAS, Dysautonomia etc. it cannot be healed, just managed. i wouldn't wish it on my worst enemy.
It's insanity that UK doctors could potentially lose their licence for trying something that could actually HELP someone. My own sorry experience has been to trust the system almost totally, obediently believing the diagnosis of depression and taking drugs like xeroxat for anorexia, antibiotics for chronic UTI and omeprazole for a hiatal hernia, both of which left me vulnerable to infection and I believe contributed to eventual m.e/CFS.
So did I get it right that defomability of red blood cells correlates with the total oxygen concentration in the blood? Wouldn't be one result out of this that ME patients tend to have decreased blood oxygen levels?
I have hyperadrenergic pots, and I wish I could be of some service to my country in some kind of battle/war, have them strap explosives to me and toss me into an enemy camp or bunker like a giant grenade. At least I'd get an award or something, and the untreatable/incurable suffering - for my family and myself - would be over.
I RECOVERED from ME. No fatigue or crash after 15 yrs. And my antibodies in Berlincures for adrenergic and muscarinic receptors went from 350% increased over ref range to ZERO, UNDETECTABLE. its autoimmune, why so low focus. I have POTS too.
@@MsZonia2 i am not sure if the Coimbra protocol AND/OR single dose of IVIG i responded very good too (but i got triggered Sjogrens later which i find much more horrible disease than ME), anyway, some of those treatments knocked down autoantibodies to adrenergic/muscarinic receptors and my fatigue was gone, it correspodned as i said to BerlinCures values from 350% increased to 0% undetectable antibody activitiy. Also if i stop high dose vitamin D my fatigue gets back so its likely BOTH, Vitamin D and IVIG single dose. - I did not cure, as I said i got unfortune to get triggered Sjogrens bc too high antibodies, too long time until i received IVIG
@Mauled By Traitors my POTS was from MCAS indeed, it responds mostly to mold exposure (trigger) quercetin.. etc. many proves it's MCAS... it's prob combination MCAS-autonomic autoimmune neuropathy. I have POTS even when antibodies were gone. ME/CFS was easier to go away as it's only fatigue (very severe CNS i had all the classical - attacks of not being able to watch TV- etc etc talk to people, noises, sounds, visionl, light, all irritated me(, that went away i guess frm IVIG knocking down my autoantibodies. BerlinCures aka Wallukat finds 80% people with antibodies, more then CellTrend.......... my SPECT scan u mention is also bad, it proves nothing, no etiology, just there is dysfunction, in metabolism. Nobody cared for my SPECT results as they show no cause of it, and it-s not damage, necessarily, can be metabolic. I had cortical difuse hypoperfusion. I prob have still to some degree bc i still ahve CNS symptosm, just not fatiuge part.
@Mauled By Traitors did you check at BerlinCures antibodies? it's a different method. Nevertheless, as much as I symphatize with OMF, i cant see their work ending up anywhere except at dead end. They even admit the nanoneedle, so socalled "ME biomarker" will be positive for many MS, RA, lupus etc patients. That's a dead end and wont give much attention by the doctors because it will still be considered as "only fatigue". Up to 30% of 'ME' patients have Sjogren's. Did you check lip biopsy, Early Sjo antibodies, ultrasound of salivary glands? do you have even a bit of dryness? is this what OMF is scanning considering 30% Sjogrens overlap. My friend has negative CellTrend but his biopsy proved Sjogren's, i dont see OMF talking about that. ME is in the end not so unique as claimed, the only drugs researched were in fact autoimmune drugs. I know way too many people misdiagnosed as ME it ended up being something else ..
Hi Carmen, thank you for your interest. I'm afraid UA-cam doesn't offer the possibility to generate a Spanish transcript from this video, and we do not have anyone in our team speaking Spanish... We've tried generating subtitles in English from UA-cam and the result wasn't satisfactory so we're in the process of editing them at the moment before publishing. Maybe that will help? Sorry that we can't do more.
If you have a way of posting the entire transcript in a Word document, Spanish speakers could put it through Google translate. It's a really inadequate way of translating something, but it would give them a basic idea. I'm a Spanish-to-English translator by the way.
@Mauled By Traitors over half have small fiber nueropathy. Third have Sjogrens. Not so hard to prove autoimmunity.. For some reason OMF is ignoring that route. Probably Whitney doesnt have neuropathy. OMF did not lead me to my diagnosis of "neuro-Sjogrens". It was Dysautonomia International that helped more. Not sure why these two organisations dont cooperate.
@Mauled By Traitors do you have POTS ? I dont have fatigue anymore last 2 yrs. I had clsssical ME, fatigue part went away paralel to Anti adrenergic and muscarinic antibodies by BerlinCures. But i developed Sjogrens because not treated on time
@Mauled By Traitors well drop the ME/CFS name bomb, it means nothing to the clinicians, this is why OMF has no success.. When i started to go to doctors and mention POTS, Small fiber neuropahty, then they listen and I am treated with respect like any MS etc patients. Before i was mocked. ME/CFS is nothing for now, too diverse, why push for it, better go under other diagnoses. and In the end you might have other diagnoses, like I do, i dont identify w ME, in the end, it's Sjogrens/dysauotnomia
@@barangoran4179 i know but they ignore it in all patients. OMF is shady to me, they absolutely dont mention autoimmunity, at all. Probably because it is not relating to Whitney. They speak about dead end nanoneedle, no doctor will care about that in next few decades, especially cos they say other auotimmune diseases will test positive too.. fatigue is not enough for Doctors... I know how they think as i am one of them with medical education.
I had ME/CFS for 8 years. Started slowly at age 61 - I had no idea why I was getting so tired all the time. 3 years going downhill - then looked up Chronic Fatigue and I seemed to have every symptom of ME/CFS. After deteriorating for 3 years, I became bedbound for 4 years.
My husband was the one watching me going downhill - I was an athlete - lane swimmer, ice skater and routine Aqua Aerobics.
So I had support and a caregiver from the beginning.
I still remember the day I became bedbound. I was with my husband and we had to climb some stairs. And I looked at them and said “ I can’t climb them. “
It seems so strange now that I am in recovery. Hard to believe, really. But I became completely bedbound. For 4 years.
Then one day, I woke up and thought “ I feel different “.
Not a clue why. I never consulted a Doctor - I had read enough about people who were dismissed with ridiculous diagnoses. I had been an RN who trained and worked in a teaching hospital. Had met many incompetent doctors.
I had been on anti depressants and anti anxiety meds for years. I knew I was stable enough in that way. I simply read the symptoms and knew what I had.
The only things I can remember is at 61, I had a rotator cuff injury and I was under massive stress. I don’t remember having any infection, but my life was upside down, so I probably wouldn’t have noticed.
I started taking supplements but no crashes because I couldn’t do anything.
How I got ME/CFS and why I recovered remains a mystery to me.
Put aside his expertise as a doctor and just credit this mans ability to be a father and heal his son. What an incredble human.
This video just popped up in my UA-cam feed. How great it is to hear about some real science and real research into ME/CFS. I'm so sick of hearing testimonials about the Lightning Process, the Gupta Progam, and other so-called treatments with no scientific basis whatsoover. But this is, sadly, where we're at. People in the ME community grasping at straws because of the huge moral deficit in the U.S. government (and, apparently, the UK government, as well), that results in almost zero funding of our illness. A huge thanks to Ron Davis, Janet Dafoe, and Whitney Dafoe, for all their efforts on our behalf. (I've had ME for over 20 years.)
I'm going to donate my money to these guys.
Thank you so much.
Avoiding crashes does not cure this disease. If it did I'd have been cured decades ago and it can come back just as easily as it seemed to vanish. Once you've had it you can never be sure it won't come back. At this point there is nothing to stop it from relapsing any time it wants to, even 30 years later you are not absolutely safe. It is awful but I'm very thankful that we have good people like Dr. Davis on our side. Thank you again.
I forgot to add that CFS needs no reason to return. If anyone disagrees with this I'd love to hear about it. We need all the info we can get, it all has value.
It's so interesting that when you're in remission it's hard to imagine or remember how bad it was when you were suffering. This may be why it's nearly impossible for a non-CFS victim to imagine what it's like when even people with it can't imagine it.
I find it fascinating that people get periods of remission! I have "better" periods but am still at least 60% loss of function. I seem to have been on a steady decline since getting ill, it's hard to imagine someone being not just improved but better (at least for a time). It must be nerve-wracking never knowing what might trigger a relapse though.
Also I think rest is essential but in the way they are speaking of for recovery I think would be pretty much impossible for most people unless we had facilities that helped. Many other illnesses have forced bed rest but most Dr's insist on the opposite so even when we do rest we feel like failures. Just taking away that stigma would be so helpful.
@Mauled By Traitors not really, relapses are pretty common. I was fine last summer, could even drink alcohol and make some parties. Now i am bedridden again, because EBV reactivated.
Mind f--k
PLLEASE HELP. I am dying. Over 10 years now and I can't live llike this.
Rick, what are ur symptoms.
Are you looking into BC 007 from Berlin Cures (Germany)? It has relieved 4 long covid patients from their symptoms. It removes the autoantibodies found in long covid as well as ME/CFS patients. Germany has sponsored further studies that should start this year. This might be the answer we have been waiting for
Is this M.E patients you mention from Long Covid or a long time M.E patient?
@@MrsBDatCreole As much as we know, some Long Covid patients develop ME/CFS, and that medication cured them from it. After only one infusion. One patient was bedridden and is now healthy.
That Women just didn't have ME. You can't effectively avoid crashes anyway.
This guy is actually a hero
High dose vit D help my symptoms, most of these being MCAS type of symptoms. When my vit D level rises above 90nmol/l, most of them symptoms are gone. When it rises above 200nmol/l, it helps even more. The more vitamin D and sunshine I get, the harder it is for me to have PEM. What comes to my other symptoms, sunshine helps dremendously. During Winters I am bedbound but after being outside in the sunshine for 2 to 3 months, I feel much better, being able to cook, clean house, do some gardening, go sailing and see friends. But I do get fatigue if I do too much. I know of three other CFS patients who improve with sunshine and my doctor says some of his patients have moved to sunny coast of Spain where their symptoms are far less and quality of life lot better. I live up North in Finland. Also methylcomalamin injections help with my cognitive problems. I have a couple of genemutations in methylation.
Hi. I have severe ME/CFS and I live in Norway. I do also get better in the summer.
I live in Canada and winters have become a real problem for me. Over this last winter I consumed lots of fish fats and forced myself outside on sunny days. My mood was okay but my energy was still much lower than what I feel in summer.
I didn't used to have this problem. It really started a few years ago when I began doing fairly strict mold avoidance during the summer months. This is something that a lot of people in the mold avoidance camp report.
ADHD Asperger's hypomobility related to.these genes
Hi, i have me/cfs since my 22 (now i am 30). I have tried so many things, but, what really helped me was probiotics (butyrat) and Probiofix inum, vitamin D a vitamin B9. I think, that problem is somewhere in my gut, but maybe there is something with hormonal system. And I have had tetanic syndrom since 13 years and everything has changed when I got helicobacter pylori. I wish you found what´s wrong and try to help your son and me too...I pray for you.
Are you in remission?
Thank you for uploading the interview 👍
You two are hero parents!! Thank you ❤
Thank you great interview!! And thank you so much for all the dedication
Thank you so much, as always for any-and-all updates and insights, despite the constancy of roadblocks worthy of the Dark Ages. As much as I would LOVE to have "up, up with people" optimism re: ME research-leading-to-bio-markers-leading-to-treatment; I have been far too sick far too long for that, and it seems clear that "long covid", if studied at all, will be discarded into psychiatric channels just as ME continues to be (almost entirely) to make sure there is never any chance that those of us who came down with the worst flu / glandular fever / etc. of our life at x,y,or z age, then never recovered, will be taken seriously, much less believed, or helped. I will keep giving as much as possible to OMF - the best place for M.E. research progress hope - but, how I wish it could be more!
5:00 She might have had something different. The fact that she could write apps in bed suggests she didn't have the brain fog. I'm not sure I could do that for any sustained time that would productive. Also, I would think writing apps would cause a crash.
Thank-you to you your wife also your Son what a fabulous thing to do also Thank-you to ME Clinics in Sheffield I attended one for 3 months still struggling to manage I was diagnosed 2 years ago been suffering 12 years now
It looks like NICE listened to the outcry about their proposed ME guidelines and amended to something more sane around Oct 2021 (I.e. after this video was made)
Should the term ‘fatigue’ be replaced with ‘muscle failure’?
I have absolutely no muscle failure. My crashes seem to come from the brain. Indeed, reading can mess me up as quickly as anything.
@@yiranimal That’s very interesting. I find my cognitive function varies a lot, but usually when I am losing the plot, a half hour of muscular relaxation brings it back. But there are lots of people for whom the cognitive thing is the worst. You say you have no muscle failure, so clearly that suggestion - to rest your muscles to conserve energy for the brain - wouldn’t be helpful for you.
@@nancyblake1679 Just to be clear, I can crash from being physically active as well. I used to work as a personal trainer and was in top shape myself, but I haven't been able to work out for 17 years. But even these physically induced crashes don't show any problem in the muscles themselves. It hits me in the brain with depression and extreme fatigue as primary symptoms. One set of 20 pushups would bring this about, probably even 10. But I can usually walk a few miles without a problem. It's different for everybody. I know people that can read all they want but can't listen to music. This is certainly a brain thing.
Or weakness?
Thank you 🙌🏾🙌🏾
I read about the electrical impedance study and the red blood cells, but didn't understand it as well as I do now after they explained it. Interesting and hopeful. Thank you so much for this interview!
You talk about an infection; I always feel like I have an internal fever on and off during the day. My temperature is normal, so it is kinda odd.
Mine tends to be a little on the low side ever since getting sick. Nothing significant but I do find that even at what would be considered a normal temp for healthy people I feel feverish. Its strange.
@Mauled By Traitors your NK cells are elevated? In CFS they are normally lowered.
OMG. I cann't go on like this. I am so sick.
L.O Simpson, hemorheologist, studied red blood cell deformability in chronic conditions especially ME. He emphasised that blood samples treated the usual way--resting in saline for 30 min-allowed the cells to resume the usual biconcave discocyte shape. If ‘immediately fixed’, the micrograph will show the variety of non-deformable shapes which impede blood-flow in the microcirculation, with consequences in muscle metabolism, cognitive function and the regulatory functions. Could your engineers look at his papers to see how he did his studies?
@Mauled By Traitors so ME is an oxygen problem, probably caused by the metabolic switch due to infection.
maybe the lack of dopamine RE abilify could be affecting the negative feedback loops of the speculative HPS axis dysfunction ? great work with the impedance stuff.
Yes and 60 percent have hdhd hypomobility lack of dopamine
Thank you! But strange, Ron's goal as I remember was to try applying some drugs to yiest metabolically trapped and see if it "unblocks the block". No word about it. Just that he moved on onto human cells now.
Honestly,no one knows about what's me/cfs at all....
He talks about yeast at 40:50
@@hartonokharisma5192 There is a lot to know about ME/CFS. Most common theory is viral infections in CNS.
Degradation of collagen or lack there of: Elhers Danos Syndrome. It’s not a mystery. It’s a genetic condition which can include all of the symptoms of cfs, fibromyalgia, autism spectrum disorders, POTS, MCAS, Dysautonomia etc. it cannot be healed, just managed. i wouldn't wish it on my worst enemy.
CONGRATULATIONS🎊👏💐🥳🎊👏
WONDERFUL INDEED!!
It's insanity that UK doctors could potentially lose their licence for trying something that could actually HELP someone. My own sorry experience has been to trust the system almost totally, obediently believing the diagnosis of depression and taking drugs like xeroxat for anorexia, antibiotics for chronic UTI and omeprazole for a hiatal hernia, both of which left me vulnerable to infection and I believe contributed to eventual m.e/CFS.
Any specialist in UK known to check the neck properly what MRIs are required?
hi, does anyone know if his blood test has been made commercially available? i am desperate to hav ethe blood test done to know if this is my problem.
So did I get it right that defomability of red blood cells correlates with the total oxygen concentration in the blood? Wouldn't be one result out of this that ME patients tend to have decreased blood oxygen levels?
why he doesn't look at the mold ⁉️ why...⁉️
I have hyperadrenergic pots, and I wish I could be of some service to my country in some kind of battle/war, have them strap explosives to me and toss me into an enemy camp or bunker like a giant grenade. At least I'd get an award or something, and the untreatable/incurable suffering - for my family and myself - would be over.
I RECOVERED from ME. No fatigue or crash after 15 yrs.
And my antibodies in Berlincures for adrenergic and muscarinic receptors went from 350% increased over ref range to ZERO, UNDETECTABLE.
its autoimmune, why so low focus.
I have POTS too.
How did you recover? What happened? If you want to share that ...it would be interesting. Only if you want to of course.
@@MsZonia2 i am not sure if the Coimbra protocol AND/OR single dose of IVIG i responded very good too (but i got triggered Sjogrens later which i find much more horrible disease than ME), anyway, some of those treatments knocked down autoantibodies to adrenergic/muscarinic receptors and my fatigue was gone, it correspodned as i said to BerlinCures values from 350% increased to 0% undetectable antibody activitiy. Also if i stop high dose vitamin D my fatigue gets back so its likely BOTH, Vitamin D and IVIG single dose. - I did not cure, as I said i got unfortune to get triggered Sjogrens bc too high antibodies, too long time until i received IVIG
@@petvuk That is very interesting. Have to look up those . I'm so sad you got Sjogrens. Thank you so much for answering!!
@Mauled By Traitors my POTS was from MCAS indeed, it responds mostly to mold exposure (trigger) quercetin.. etc. many proves it's MCAS... it's prob combination MCAS-autonomic autoimmune neuropathy. I have POTS even when antibodies were gone. ME/CFS was easier to go away as it's only fatigue (very severe CNS i had all the classical - attacks of not being able to watch TV- etc etc talk to people, noises, sounds, visionl, light, all irritated me(, that went away i guess frm IVIG knocking down my autoantibodies. BerlinCures aka Wallukat finds 80% people with antibodies, more then CellTrend.......... my SPECT scan u mention is also bad, it proves nothing, no etiology, just there is dysfunction, in metabolism. Nobody cared for my SPECT results as they show no cause of it, and it-s not damage, necessarily, can be metabolic. I had cortical difuse hypoperfusion. I prob have still to some degree bc i still ahve CNS symptosm, just not fatiuge part.
@Mauled By Traitors did you check at BerlinCures antibodies? it's a different method. Nevertheless, as much as I symphatize with OMF, i cant see their work ending up anywhere except at dead end. They even admit the nanoneedle, so socalled "ME biomarker" will be positive for many MS, RA, lupus etc patients. That's a dead end and wont give much attention by the doctors because it will still be considered as "only fatigue". Up to 30% of 'ME' patients have Sjogren's. Did you check lip biopsy, Early Sjo antibodies, ultrasound of salivary glands? do you have even a bit of dryness? is this what OMF is scanning considering 30% Sjogrens overlap. My friend has negative CellTrend but his biopsy proved Sjogren's, i dont see OMF talking about that. ME is in the end not so unique as claimed, the only drugs researched were in fact autoimmune drugs. I know way too many people misdiagnosed as ME it ended up being something else ..
Could you please put Spanish subtitles?
Hi Carmen, thank you for your interest. I'm afraid UA-cam doesn't offer the possibility to generate a Spanish transcript from this video, and we do not have anyone in our team speaking Spanish... We've tried generating subtitles in English from UA-cam and the result wasn't satisfactory so we're in the process of editing them at the moment before publishing. Maybe that will help? Sorry that we can't do more.
@@sheffieldmefibromyalgiagroup English is ok for me. The Spanish version would help Spanish speakers. Thanks anyway.
If you have a way of posting the entire transcript in a Word document, Spanish speakers could put it through Google translate. It's a really inadequate way of translating something, but it would give them a basic idea. I'm a Spanish-to-English translator by the way.
Shame on NIH!
Can someone make some NFTs to raise money for OMF?
Its autoimmune. No big mystery
@Mauled By Traitors over half have small fiber nueropathy. Third have Sjogrens.
Not so hard to prove autoimmunity..
For some reason OMF is ignoring that route.
Probably Whitney doesnt have neuropathy.
OMF did not lead me to my diagnosis of "neuro-Sjogrens". It was Dysautonomia International that helped more.
Not sure why these two organisations dont cooperate.
@Mauled By Traitors do you have POTS ? I dont have fatigue anymore last 2 yrs. I had clsssical ME, fatigue part went away paralel to Anti adrenergic and muscarinic antibodies by BerlinCures.
But i developed Sjogrens because not treated on time
@Mauled By Traitors well drop the ME/CFS name bomb, it means nothing to the clinicians, this is why OMF has no success.. When i started to go to doctors and mention POTS, Small fiber neuropahty, then they listen and I am treated with respect like any MS etc patients. Before i was mocked. ME/CFS is nothing for now, too diverse, why push for it, better go under other diagnoses. and In the end you might have other diagnoses, like I do, i dont identify w ME, in the end, it's Sjogrens/dysauotnomia
ME has some autoimmune components to it, but its not found in all patients.
@@barangoran4179 i know but they ignore it in all patients.
OMF is shady to me, they absolutely dont mention autoimmunity, at all. Probably because it is not relating to Whitney.
They speak about dead end nanoneedle, no doctor will care about that in next few decades, especially cos they say other auotimmune diseases will test positive too.. fatigue is not enough for Doctors... I know how they think as i am one of them with medical education.