Do you know much about the phase 2 clinical trials of BC007 from Berlin cures? Looks like a breakthrough treatment but can’t find much info on the latest trials
Well, I agree it is a breakthrough treatment and I'll have a video about it in a while. The latest I've heard is that they have their full quota of 114 patients and that the results should be available in the autumn. Then it is a question of a phase III trial. Probably two years till regulatory approval unless some kind of emergency use granted but I don't know how feasible that is.
Wow. I’ve had ME for 16 years, diagnosed for 5(ish!) and I’ve never come across you before. Very much looking forward to watching your videos (when my brain allows for it of course.)
As far as I know it’s not necessarily just the count of those auto antibodies that is important. It might also be an impaired function by for example deformation. But great video, thank u so much for all your effort!
Thank you for sharing that. Yes you are right. It is whether or not the AABS are binding to the receptor that is important for whether they are causing harm or not. My next video talks about this more.
Given that this is happening indeed, is there any indication of affected people's bodies recovering or getting a handle on this illness? What is your best informed prognosis for the mid to long term progession of the disease? Will we get better, become chronic or deteriorate?
Well, some people do recover from these illnesses. Have a look at Raelan Agle's channel or Dan Neuffer's 'CFS Unravelled' channel for lots of recovery interviews. Some of those people - you would think - must have had the AABS. AABS have a natural life cycle of four months so *perhaps* (this is just hypothetical) if someone does everything right (pacing, brain retraining, diet, whatever supplements/medications they might need, etc) over a four month period, the AABS might reduce on their own. On the flip side, perhaps some people have so much autoimmunity that it just keeps sustaining itself, no matter what someone does. That is all speculative. But I try to focus on the positive fact that some are recovering and improving. And although some do deteriorate over time, ME/CFS is not generally thought of - to the best of my knowledge - as an illness in which deterioration is certain.
@@me-cfs-strategiesforhealing thank you for your reply, dedication to help and encouragement, coupled with your obvious further insights most of us wouldn't heve the time and understanding to muster. Godspeed for everyone affected, hoping everyone will overcome in time.
@@me-cfs-strategiesforhealing I've heard not everybody with ME/CFS have the AABS, if they don't have them then what is causing the disease? Did you had time to see both guys disease models I shared with you? Both of them don't believe autoimmunity are the causes of the disease.
I just had time for the first guy, sorry. I have a lot of work to get through at the moment. Yes, the autoimmunity is definitely not the cause. It is a secondary factor that affects quite a lot of patients to varying degrees. For some, it would seem that it becomes responsible for a heavy symptom burden, for others less so. Ultimately, I think treatments for it will help relieve the body of a burden, allow it to function better, improve quality of life and - hopefully - help people move towards a recovery more easily while they engage in a range of healing strategies. Personally, I think the dysautonomia is the root cause of ME/CFS.
Medications for the autoimmunity in ME/CFS have not been studied (though one group would like to get funding for a study to find medications that could be used). I saw a talk though by Prof Klaus Wirth who mentioned Mestinon and Nicotine patches, both of which might have beneficial effects on alpha 1 and muscarnic 3 receptors (not medical advice, just saying what Wirth said). Check out my immunoadsorption treatment video otherwise and I have one on Berlin Cures (an upcoming infusion) in a few days.
@@me-cfs-strategiesforhealing Hi... I would really like to ask. I get these chest pains sometimes and then I get this sweating and tiredness feeling. It happens many times.... But my ELECTROCARDIOGRAM and Echocardiogram were normal. I also did a Holter which didn't show anything other than normal. So what more can I do.?.
I'm sorry you are having chest pains though I obviously can't advise on any specifics. I'm not a doctor and nothing I say is medical advice. In terms of videos on this channel that might be of interest, my low blood volume and microclotting videos are relevant to cardiovascular issues in ME/CFS.
Hello, I have a low blood cell count for no apparent reason, could this be related to ME? As is predictable my doctors are very dismissive of my theory that my exhaustion is just one of those things and go to bed early.
I don't have PEM nor POTS but the dizziness, anxiety and brain fog is killing me, I don't want to live like this forever. Do you think I have ME/CFS or a middle form of it? I wonder when this nightmare will end.
Very hard to say. ME/CFS is very much associated with PEM. However, there is a large cluster of illnesses that are not too dissimilar from each other in some ways (fibromyalgia, MCAS, chemical sensitivity, etc). For more in-depth explorations of peoples' situations and strategies like brain retraining or various treatments, I do offer a consultations service (details on my website).
@@me-cfs-strategiesforhealing I would like to but I already spent all my saving on medical tests and doctors and without any benefit. This disease is the worst thing that has happened to me.
Sure, I understand. Just so you know and in case you are interested and your financial situation improves in the future, my consult service can be tailored to low budgets. It is via voicemail and just 1 euro per minute. So if a question can be answered in 10 minutes, that message only costs 10 euro, etc. (Though there is a little extra for reflection time, but that might only be 5 euro or something). Someone can ask me to keep the message to a certain length to allow for budget constraints. I also teach privately brain retraining methods that can be effective for some people.
@anglebryan98 hang in there, you are not alone. I am currently getting some relieve from a good herbalist. For me the best thing is to keep moving, it is hard to get going, but as I do physical work, short of breath as I am, it gets better. At least better than resting every time. I have always been active, I build timber frame houses, so I used to be very fit. Now I struggle. But I feel like I am slowly improving. There was a time when I thought this way is not a life worth living, but I have to banish these demons from my head. Low dopamine sounds about right... Godspeed!
Anxiety is slowly improving as well. Keep breathing, keep moving. We must get through this, somehow I feel there are some who just want our surrender. Let's not hand it to them!
Long covid no susch thing .we all know the real cause .the juice .id rather listen to the real professionals on what the real cause is and we all know what that is .😮
This is very informative and makes so much sense to what is going on. Now the big question is what we can about it? It’s a bit overwhelming thinking how much dysfunction is going on.
I know, it is overwhelming. The more I read the research, the more I feel 'Oh God, no wonder I can feel so ill!'. There is so much that goes wrong in the bodies of ME/CFS patients. One day the joke will be on the mainstream that they missed it all. As for what to do about autoimmunity, I'll have a few videos upcoming on that though, for now, it depends on having a good amount of spare cash unfortunately.
Sorry for slow reply. For some reason, were comment was 'held for review' and I didn't see it. I don't know if Berlin Cures 007 will be available in US or not unfortunately. It should be, as it will be a drug/infusion rather than something terribly complicated, but I don't know unfortunately.
Thank you Patrick! I do have another question that is regarding the auto anti bodies that affect fat metabolism. I am on day 40 of lion diet and really struggling with fat adaptation. Do you struggle with this too as I know you did keto and now carnivore.?I also deal with gastritis and the fat is a bit tough on my stomach too. I know forcing my liver into glycogen’s so often isn’t a good thing either. Now after hearing about these auto antibodies affecting fat metabolism, I’m thinking carnivore/keto may not be a good option so would love to know your experience with fat adaptation. I feel as though my cortisol is in constant overdrive now with zero carbs and it’s really too bad as do many benefits to this way of eating!
Hi Jelene. Sorry it is a bit of a struggle right now. Personally, I find very fatty meats make me nauseous (eg fatty lamb chops) but I can cope well with fattier ground beef where the fat is diced up and less concentrated. I've found a butcher who prepares 30-40% fatty mince for me and that doesn't make me feel sickly. Do you think your cortisol / stress response went into overdrive on the diet or was it always like that?
Hello new here M.E for 10 years. THANKYOU SO SO MUCH. JUST FOR THIS CHANNEL AND INFO. I have fibromyalgia too Autoimmune hepatitis along with m.e - All diagnosed same week in 2014. Does this mean i have 3 Autoimmune diseases please!?
Hi Christine. ME/CFS autoimmunity is different from other illnesses. The body is not attacking itself but the autoantibodies are instead blocking various functions to further heighten ME/CFS pathomechanisms. Not everybody with ME/CFS has the autoantibodies and, among those that do have them, the degree will be different. Testing can be done via cell trend lab (see my video on testing) though that is a little tricky if outside of Germany (though not impossible). So in ME/CFS, autoimmunity is best thought of as a secondary dysfunction that can be brought on by the illness and make the overall situation additionally worse, but the degree to which it does this will depend on person to person.
I don't know unfortunately. I know some have benefitted from it. In upcoming videos, I'll be talking about immunoadsorption and also the future Berlin Cures.
You don’t want to live like this forever? I’ve lived like this for over 40 years. Went months on and off so weak couldn’t feed myself. Couldn’t roll over in bed. Couldn’t talk or listen from weakness. Haven’t slept without pills for thirty years before that only a couple of hours a night. Yes affected heart and in hospital twice because kidneys quit working. Immunity! What immunity. Pick up every big going around. As of now I can get up for about two hours and back to bed until next morning. How much does it cost to go to Berlin. There’s an idea.
Long-vax syndrome and Long Covid are very similar if not the same. Both virus and vaccine can cause this. Unfortunately, the mainstream tend to ignore those suffering from the former while those who are (reasonably) against draconian Covid policies tend to turn a blind eye to those suffering from Long Covid.
Long Covid is post virus, post-vax is Post-Vax syndrome. Both can have a similar presentation. ME/CFS-like illnesses can have MANY different causes but tend to be fairly similar, in terms of core problems, once they get going.
Do you know much about the phase 2 clinical trials of BC007 from Berlin cures? Looks like a breakthrough treatment but can’t find much info on the latest trials
Well, I agree it is a breakthrough treatment and I'll have a video about it in a while. The latest I've heard is that they have their full quota of 114 patients and that the results should be available in the autumn. Then it is a question of a phase III trial. Probably two years till regulatory approval unless some kind of emergency use granted but I don't know how feasible that is.
Wow. I’ve had ME for 16 years, diagnosed for 5(ish!) and I’ve never come across you before.
Very much looking forward to watching your videos (when my brain allows for it of course.)
Thank you, hope you find the channel helpful
As far as I know it’s not necessarily just the count of those auto antibodies that is important. It might also be an impaired function by for example deformation. But great video, thank u so much for all your effort!
Thank you for sharing that. Yes you are right. It is whether or not the AABS are binding to the receptor that is important for whether they are causing harm or not. My next video talks about this more.
@@me-cfs-strategiesforhealing looking forward! ⭐️🙏
Very interesting thank you
Given that this is happening indeed, is there any indication of affected people's bodies recovering or getting a handle on this illness? What is your best informed prognosis for the mid to long term progession of the disease? Will we get better, become chronic or deteriorate?
Well, some people do recover from these illnesses. Have a look at Raelan Agle's channel or Dan Neuffer's 'CFS Unravelled' channel for lots of recovery interviews. Some of those people - you would think - must have had the AABS. AABS have a natural life cycle of four months so *perhaps* (this is just hypothetical) if someone does everything right (pacing, brain retraining, diet, whatever supplements/medications they might need, etc) over a four month period, the AABS might reduce on their own. On the flip side, perhaps some people have so much autoimmunity that it just keeps sustaining itself, no matter what someone does. That is all speculative. But I try to focus on the positive fact that some are recovering and improving. And although some do deteriorate over time, ME/CFS is not generally thought of - to the best of my knowledge - as an illness in which deterioration is certain.
@@me-cfs-strategiesforhealing thank you for your reply, dedication to help and encouragement, coupled with your obvious further insights most of us wouldn't heve the time and understanding to muster. Godspeed for everyone affected, hoping everyone will overcome in time.
Thank you for your kind words.
@@me-cfs-strategiesforhealing I've heard not everybody with ME/CFS have the AABS, if they don't have them then what is causing the disease?
Did you had time to see both guys disease models I shared with you? Both of them don't believe autoimmunity are the causes of the disease.
I just had time for the first guy, sorry. I have a lot of work to get through at the moment.
Yes, the autoimmunity is definitely not the cause. It is a secondary factor that affects quite a lot of patients to varying degrees. For some, it would seem that it becomes responsible for a heavy symptom burden, for others less so.
Ultimately, I think treatments for it will help relieve the body of a burden, allow it to function better, improve quality of life and - hopefully - help people move towards a recovery more easily while they engage in a range of healing strategies.
Personally, I think the dysautonomia is the root cause of ME/CFS.
What medications should one take??
Medications for the autoimmunity in ME/CFS have not been studied (though one group would like to get funding for a study to find medications that could be used). I saw a talk though by Prof Klaus Wirth who mentioned Mestinon and Nicotine patches, both of which might have beneficial effects on alpha 1 and muscarnic 3 receptors (not medical advice, just saying what Wirth said). Check out my immunoadsorption treatment video otherwise and I have one on Berlin Cures (an upcoming infusion) in a few days.
@@me-cfs-strategiesforhealing Hi... I would really like to ask. I get these chest pains sometimes and then I get this sweating and tiredness feeling. It happens many times.... But my ELECTROCARDIOGRAM and Echocardiogram were normal. I also did a Holter which didn't show anything other than normal. So what more can I do.?.
I'm sorry you are having chest pains though I obviously can't advise on any specifics. I'm not a doctor and nothing I say is medical advice. In terms of videos on this channel that might be of interest, my low blood volume and microclotting videos are relevant to cardiovascular issues in ME/CFS.
Hello, I have a low blood cell count for no apparent reason, could this be related to ME? As is predictable my doctors are very dismissive of my theory that my exhaustion is just one of those things and go to bed early.
Ages ago I saw a study about perhaps low wbc or neutrophils or some such. I can’t remember the details. Perhaps have a look around….
Glad to have come across this platform. I am a sufferer forever.
Thank you, I hope you find it of help
I don't have PEM nor POTS but the dizziness, anxiety and brain fog is killing me, I don't want to live like this forever.
Do you think I have ME/CFS or a middle form of it? I wonder when this nightmare will end.
Very hard to say. ME/CFS is very much associated with PEM. However, there is a large cluster of illnesses that are not too dissimilar from each other in some ways (fibromyalgia, MCAS, chemical sensitivity, etc).
For more in-depth explorations of peoples' situations and strategies like brain retraining or various treatments, I do offer a consultations service (details on my website).
@@me-cfs-strategiesforhealing I would like to but I already spent all my saving on medical tests and doctors and without any benefit. This disease is the worst thing that has happened to me.
Sure, I understand.
Just so you know and in case you are interested and your financial situation improves in the future, my consult service can be tailored to low budgets. It is via voicemail and just 1 euro per minute. So if a question can be answered in 10 minutes, that message only costs 10 euro, etc. (Though there is a little extra for reflection time, but that might only be 5 euro or something). Someone can ask me to keep the message to a certain length to allow for budget constraints.
I also teach privately brain retraining methods that can be effective for some people.
@anglebryan98 hang in there, you are not alone. I am currently getting some relieve from a good herbalist. For me the best thing is to keep moving, it is hard to get going, but as I do physical work, short of breath as I am, it gets better. At least better than resting every time. I have always been active, I build timber frame houses, so I used to be very fit. Now I struggle. But I feel like I am slowly improving. There was a time when I thought this way is not a life worth living, but I have to banish these demons from my head. Low dopamine sounds about right... Godspeed!
Anxiety is slowly improving as well. Keep breathing, keep moving. We must get through this, somehow I feel there are some who just want our surrender. Let's not hand it to them!
Long covid no susch thing .we all know the real cause .the juice .id rather listen to the real professionals on what the real cause is and we all know what that is .😮
LC is caused by virus, post-vax syndrome by the ‘juice’ - similar presentation in both cases is common.
This is very informative and makes so much sense to what is going on. Now the big question is what we can about it? It’s a bit overwhelming thinking how much dysfunction is going on.
I know at the end you mentioned some things on the horizon but will they be available in the U.S too?
I know, it is overwhelming. The more I read the research, the more I feel 'Oh God, no wonder I can feel so ill!'. There is so much that goes wrong in the bodies of ME/CFS patients. One day the joke will be on the mainstream that they missed it all.
As for what to do about autoimmunity, I'll have a few videos upcoming on that though, for now, it depends on having a good amount of spare cash unfortunately.
Sorry for slow reply. For some reason, were comment was 'held for review' and I didn't see it. I don't know if Berlin Cures 007 will be available in US or not unfortunately. It should be, as it will be a drug/infusion rather than something terribly complicated, but I don't know unfortunately.
Thank you Patrick! I do have another question that is regarding the auto anti bodies that affect fat metabolism. I am on day 40 of lion diet and really struggling with fat adaptation. Do you struggle with this too as I know you did keto and now carnivore.?I also deal with gastritis and the fat is a bit tough on my stomach too. I know forcing my liver into glycogen’s so often isn’t a good thing either. Now after hearing about these auto antibodies affecting fat metabolism, I’m thinking carnivore/keto may not be a good option so would love to know your experience with fat adaptation. I feel as though my cortisol is in constant overdrive now with zero carbs and it’s really too bad as do many benefits to this way of eating!
Hi Jelene. Sorry it is a bit of a struggle right now. Personally, I find very fatty meats make me nauseous (eg fatty lamb chops) but I can cope well with fattier ground beef where the fat is diced up and less concentrated. I've found a butcher who prepares 30-40% fatty mince for me and that doesn't make me feel sickly. Do you think your cortisol / stress response went into overdrive on the diet or was it always like that?
Hello new here M.E for 10 years. THANKYOU SO SO MUCH. JUST FOR THIS CHANNEL AND INFO.
I have fibromyalgia too
Autoimmune hepatitis along with m.e - All diagnosed same week in 2014.
Does this mean i have 3 Autoimmune diseases please!?
Hi Christine. ME/CFS autoimmunity is different from other illnesses. The body is not attacking itself but the autoantibodies are instead blocking various functions to further heighten ME/CFS pathomechanisms. Not everybody with ME/CFS has the autoantibodies and, among those that do have them, the degree will be different. Testing can be done via cell trend lab (see my video on testing) though that is a little tricky if outside of Germany (though not impossible). So in ME/CFS, autoimmunity is best thought of as a secondary dysfunction that can be brought on by the illness and make the overall situation additionally worse, but the degree to which it does this will depend on person to person.
Very informative
Thank you.
Do you know if IVIG would work? What about in case the symptoms were caused by a vaccine?
I don't know unfortunately. I know some have benefitted from it. In upcoming videos, I'll be talking about immunoadsorption and also the future Berlin Cures.
How are these tested?
Cell trend lab in Germany (receives samples from anywhere), check out my testing video
You don’t want to live like this forever? I’ve lived like this for over 40 years. Went months on and off so weak couldn’t feed myself. Couldn’t roll over in bed. Couldn’t talk or listen from weakness. Haven’t slept without pills for thirty years before that only a couple of hours a night. Yes affected heart and in hospital twice because kidneys quit working. Immunity! What immunity. Pick up every big going around. As of now I can get up for about two hours and back to bed until next morning. How much does it cost to go to Berlin. There’s an idea.
I'm so sorry for your suffering and for so long. It is a very cruel illness. I hope there can yet be better days ahead for you.
Its long vax clot shot, not long covid.
Long-vax syndrome and Long Covid are very similar if not the same. Both virus and vaccine can cause this. Unfortunately, the mainstream tend to ignore those suffering from the former while those who are (reasonably) against draconian Covid policies tend to turn a blind eye to those suffering from Long Covid.
@@me-cfs-strategiesforhealing
'if not the same' they are the same
us unvaxxed have been looking on
perplexed at you guys 😏
Why do you assume I'm vaccinated? They would have had to hold me down to take that thing!
It’s long vax syndrome causing all the issues
And damages from the dab will be called long covid .😅😅😅😅
Long Covid is post virus, post-vax is Post-Vax syndrome. Both can have a similar presentation. ME/CFS-like illnesses can have MANY different causes but tend to be fairly similar, in terms of core problems, once they get going.
How do fix auto immune , u fuel your immense system wit gods greater good off Mother Nature foods
My friends @ the light 💡 newspaper did tell me to eat raw pineapple core 🍍 and vitams D3 and k 🤔
For the heart problems and detoxing
Thanks for sharing that.
Didn't get COVID or the VAXX...feel better EVERYDAY about living my LIFE ORGANICALLY!!!
Rhubarb
With crumble please