Cannot believe just today found this site. John, you are a treasure Sickest past 9 yrs but sll this started on '90s. Had amazing care in NC. Returning to MA 11 years ago..huge mistake. Mefical support??!!! I slso have hypogammaglobulinemia....and they refuse to treat me here since 2014. And am about to be homeless. One would think Boston would be great....NO. When treated with IVIG was functional. 😢
Can't repeat these basics enough! And when I forget, I go back to basics! Excellent and THANK YOU! Always good to hear from you all! John -- you are awesome!
I am so thankful I found your videos. There aren't actually a lot I've found really helpful for me. I'm focusing on pacing but maintaining a mobile lifestyle. Currently walking at a snails pace to focus on 5000 to 6000 steps a day (used to run 3 to 5 miles 5 days a week around 5 to 6 mph and average 20000 steps a day).
Thanks Johnny. Been feeling really upset recently about all the people that have disappeared out of my life. Its good to be reminded that its just par for the course and not because Im a bad person. Best wishes to you.
I was officially diagnosed today with ME/Fibromyalgia. You're videos have been a great help already, especially for explaining to family and friends. Please continue posting more videos! Thank you
Hi, do you have any resources for the ME/CFS support groups u attend? You have no idea how much your channel/videos have been encouraging me during this very very difficult unknown time where I’m grieving who I used to be. I haven’t gotten official diagnosis yet & still in the process of rule out. From watching your videos I resonate with a lot you share so when you kno you kno. My Dr. is adamant about giving me the diagnosis. It’s not even about that, I just want to be able to function daily again & feel so hopeless about how these symptoms are affecting me & the impact it’s having on me emotionally. You are helping SO many ppl suffering by having the courage to create this channel. Thank u 4 all you do.
Sorry you're having a tough time. M.E. can be so difficult. I take part in FB support groups. They are rather large and you can almost always connect with someone who shares things in common with you.
Not sure if Me/CFS or MS but been in hell three times since mono in 2017 (leaning RRMS but poor) Hidden illnesses are terrible and absolutely dehumanizing. I look healthy but am so far from it and, while being bipolar, this isn’t the ebbs and flows that I used to have. EBV needs to be studied and solved. It destroys lives.
I've been dealing with this over 10 years, its been impossible to explain. I went through all the labs etc and no doctor even mentioned this. I narrowed down 4 possible problems. Lyme's disease, CFS/ME, Fibromyalgia or Cancer. It seems more likely its CFS/ME based on the time I've had it and being a male. I can test for Lyme's and rule it out. Finally seeing hope.
Hi just recently subscribed. Been dealing with chronic fatigue abd fibromyalgia around 30 years but got the official diagnose around 25 years ago. My social life is going food shopping but now use earplugs due to noise sensitivity abd need husband to help now. So not that enjoyable anymore. Think i should join a convent the quiet life is right up my alley lol
Quick question when you are up to it... do you ever have several days to a week r more where you feel good (maybe not great) and question whether your diagnosis is correct?
Hi. I have been researching chronic fatigue syndrome and your videos came up. I haven’t been to a doctor in years but just got one. I need to explain the symptoms I’m having and am nervous because I don’t want to shut down. Any advice for advocating for yourself? I have never been able to do it. I don’t know this dr so that makes it harder too. Thank you for all your information. It’s been really helpful. I have been pushing through for so long telling myself I need to do more and that I’m lazy. Telling myself other people can do it why can’t I? Seeing that there are people out there that suffer from these symptoms has made me aware that there might be a bigger issue going on here.
ME/CFS is a progressive disease in my case. Everytime I get an infection, I get worse and my baseline lowers quite a bit. Right when I developed cfs I used to be able to function at 70%, today, 8 years later, I function at 40%. Does that happen to anybody else?
from Japan. Thank you Jhonny. And If you don't mind me asking please let me know why this time LDN is not listed? It is not that good any more? Because I've just ordered one .
Hello, I thought about adding LDN to this list but I wanted to keep it simple for people new to M.E. I think its still very helpful for some people. Ive always wanted to visit Japan. 😊
On Monday 13.6.2023 I am 100%. 2.4.2019 evrything starts and on 10.9.2019 I was on 19.9% my lowest point.... It's crazy that I have it all back and you are stll in this. I think it's all about reduced blood flow in the brain... With love, Mike
What is your opinion on all these videos regarding recovery and "adjustment periods"?. So many push exercise within your baseline. But that's difficult when sometimes I hit my target HR just standing up, while other times it takes an extremely slow walk to do it.
What are your thoughts on mobility aids for ME? Wondering which help with conserving our energy and which could ultimately use more energy. I have 4 grandchildren and want to continue being a part of their lives. I currently only leave the house about once a week, mostly for appointments and groceries.
I don't believe there are good treatments for this disease. I've done so so many alternative protocols it's unreal. Never had real results. That's one thing you say Johnny that I really don't agree with. You seem to think that you just keep looking till you find a doctor who offers treatment. First of all I don't even believe that if I went around looking for doctors that would be helpful. It would cause me so much stress so much overwhelm that I would just get even sicker if that's possible. I wish you wouldn't dangle that like a carrot that people should just keep on looking for a doctor who has some sort of treatment. I want to ask you, what kind of treatment okay? Because if you're talking about an American Medical Association doctor AMA they have nothing Johnny and you know that. The only thing you can do is with your own money try holistic alternative type of remedies. Anyways that's just really important for me Johnny to share with you. Because sometimes you have to keep the doctor you have because he offers other type of help regarding other issues that have Arisen and only that doctor will deal with it. But he doesn't deal with CFS /ME. Anyways that does not mean I do not appreciate you. I appreciate you for having this channel here and hopefully a community where we can understand each other just how much it sucks to have this Illnes.
Hello Kavita, I understand your frustration. Ive been treated with LDN, coQ10, probtiocs and had so much testing done by a competent doctor, they found I also have CIRS and have been given treatment for that. They also found I have a couple other smaller issues I take supplements for. If I had given up and accepted what my previous un-interested doctors said/did I would be in really really bad shape. None of my videos will be a one size fits all and I understand that. I hope you do too.
He’s suggesting people try and find the treatment they deserve. It can make a difference. Not sure its fair to say hes “dangling that like a carrot” or to suggest he “knows” there is no treatment. Many people have done really well taking LDN. Something he mentioned several years ago.
@@fight4me747 hey Johnny thanks for replying!! Are these things you are taking or doing given by an MD??. I have tried, as I said so many Natural and "Holistic" protocols. I've changed my eating and truly nothing has touched the utter Fatigue. I have never met an MD who had the knowledge of this illness. I am in no way upset at you. I just find that if one has severe symptoms, to say keep looking till you find a Dr. Who can offer treatment, is like finding a needle in a haystack. Can you PLEASE Explain the one called LDN and CIRS. THANKS. What is an interesting aspect of being so ill is if one has COMPLEX PTSD from a very traumatic childhood, that can also Cause all kinds of physical disease and pain. There is a book called 'THE BODY KEEPS THE SCORE' The title says it all. It's something that can be a double edge sword. What came first cfs/me or the body/brain is affected By TRAUMA. All I know is I definitely have CFS/ME and it's morphed into so many problems. Degenerative Disc Disease, Neuropathy, and ending up bed bound. The greatest thing is recently I got a mobility scooter 🛵. A life changer. Thank you for everything you do Johnny. I just am frustrated with false hope. I got more relaxed when I stopped LOOKING for Answers.I am 40 years living with this. As I've gotten older it's gotten worse. I had to stop so many things I loved. No more Motorhoming around America. How are you feeling Jonny? Bless everyone who has this illness💙💜
@@Anchor7 HI Anchor. Please try to understand. I have had CFS/ME for 40 years. I have been told so many times that a certain protocol will work for huge healing. It has not been effective. The truth is that most regular MD doctors first of all don't even believe that this is a real illness and if you find one that does they don't offer you any treatment that I have found. So Johnny replied to me about the two things that have helped him and they are two things I have never heard of. So, I wasn't trying to be rude I was simply trying to say it can be like dangling a carrot in front of somebody and then they'll go Try this and then they'll go try the next carrot and sooner or later it becomes so overwhelming and so stress-inducing you get sick just by searching for some answers and help. So all I ask of you is not to make such a big deal out of it. I am not staying Johnny is wrong or bad to do anything he wants to do that was just my feedback from my experience. So try to see it from both sides of the coin. I meant no harm by it at all just an additional way of seeing things that are suggested. I hope you are well and taking good care of yourself
@@kavitadeva I totally understand where you are coming from. I also know all to well how hard it is to seek proper help when you are ill. If you look through the videos Ive made, there is one on LDN. Its older and I may need to update it since a lot more has been learned since then. But, its basically a pill people take and its helped many with symptoms. CIRS is “Chronic Inflammatory Response Syndrome” which is a totally different illness from ME but has overlapping symptoms. Thanks for watching, hope you feel ok and please remember, I know many things that I say wont work for everyone. But I do them in case it can help even ONE person with this terrible disease. We all deserve better.
Absolutely finding a doctor who understands is key, the difference is quite astonishing when someone hears you.
Exactly. I had fabulous care in North Carolina. Back in Boston...... zero good words. Don't come here.
ME for almost a decade this is all great and valuable advice ❤️
Thank you friend.
Cannot believe just today found this site. John, you are a treasure
Sickest past 9 yrs but sll this started on '90s. Had amazing care in NC. Returning to MA 11 years ago..huge mistake. Mefical support??!!!
I slso have hypogammaglobulinemia....and they refuse to treat me here since 2014. And am about to be homeless. One would think Boston would be great....NO.
When treated with IVIG was functional. 😢
Thanks for using your energy and providing another source of support for the M.E. Community 🙌
Can't repeat these basics enough! And when I forget, I go back to basics! Excellent and THANK YOU! Always good to hear from you all! John -- you are awesome!
Great to see you are still helping and guiding.
I am so thankful I found your videos. There aren't actually a lot I've found really helpful for me.
I'm focusing on pacing but maintaining a mobile lifestyle. Currently walking at a snails pace to focus on 5000 to 6000 steps a day (used to run 3 to 5 miles 5 days a week around 5 to 6 mph and average 20000 steps a day).
I must pace so much better!! I am so not good at this and crash alot. I have C PTSD which makes it hard for me to relax etc. Thanks so much ❤
Me too. I know how tough it is
Yeah, good one. Probably my top five as well.
Thank you Johnny😊
Thanks Johnny. Been feeling really upset recently about all the people that have disappeared out of my life. Its good to be reminded that its just par for the course and not because Im a bad person. Best wishes to you.
Sorry you have lost people in your life. I def have too
Very informative!
Thank you... 🙏 😊
I have healed after 5 horrible years. Thanks to gupta program. My heart is with you guys.
Yes great to hear, I believe recovery is possible god bless
I was officially diagnosed today with ME/Fibromyalgia. You're videos have been a great help already, especially for explaining to family and friends. Please continue posting more videos! Thank you
They don't seam to no if it's fybromyalgia or me causing the pain because symptoms change over the decades
Hi, do you have any resources for the ME/CFS support groups u attend?
You have no idea how much your channel/videos have been encouraging me during this very very difficult unknown time where I’m grieving who I used to be. I haven’t gotten official diagnosis yet & still in the process of rule out. From watching your videos I resonate with a lot you share so when you kno you kno. My Dr. is adamant about giving me the diagnosis. It’s not even about that, I just want to be able to function daily again & feel so hopeless about how these symptoms are affecting me & the impact it’s having on me emotionally. You are helping SO many ppl suffering by having the courage to create this channel. Thank u 4 all you do.
Sorry you're having a tough time. M.E. can be so difficult. I take part in FB support groups. They are rather large and you can almost always connect with someone who shares things in common with you.
Not sure if Me/CFS or MS but been in hell three times since mono in 2017 (leaning RRMS but poor)
Hidden illnesses are terrible and absolutely dehumanizing. I look healthy but am so far from it and, while being bipolar, this isn’t the ebbs and flows that I used to have. EBV needs to be studied and solved. It destroys lives.
Sorry about your health issues. If you suspect MS, an MRI could help determine that. Talk to your Doc about it
What are your symptoms my mum has severe ms I have CFS fybromyalgia
I've been dealing with this over 10 years, its been impossible to explain. I went through all the labs etc and no doctor even mentioned this. I narrowed down 4 possible problems. Lyme's disease, CFS/ME, Fibromyalgia or Cancer. It seems more likely its CFS/ME based on the time I've had it and being a male. I can test for Lyme's and rule it out. Finally seeing hope.
Hi just recently subscribed. Been dealing with chronic fatigue abd fibromyalgia around 30 years but got the official diagnose around 25 years ago. My social life is going food shopping but now use earplugs due to noise sensitivity abd need husband to help now. So not that enjoyable anymore. Think i should join a convent the quiet life is right up my alley lol
How do we no what's the fybromyalgia.or CFS as pain comes with both
🙏🙏🙏
Just popping in to check on you. Hope all is going okay.
Thanks 😀. Doing ok, ups and downs like everyone else.
Quick question when you are up to it... do you ever have several days to a week r more where you feel good (maybe not great) and question whether your diagnosis is correct?
Hi. I have been researching chronic fatigue syndrome and your videos came up. I haven’t been to a doctor in years but just got one. I need to explain the symptoms I’m having and am nervous because I don’t want to shut down. Any advice for advocating for yourself? I have never been able to do it. I don’t know this dr so that makes it harder too. Thank you for all your information. It’s been really helpful. I have been pushing through for so long telling myself I need to do more and that I’m lazy. Telling myself other people can do it why can’t I? Seeing that there are people out there that suffer from these symptoms has made me aware that there might be a bigger issue going on here.
ME/CFS is a progressive disease in my case. Everytime I get an infection, I get worse and my baseline lowers quite a bit. Right when I developed cfs I used to be able to function at 70%, today, 8 years later, I function at 40%. Does that happen to anybody else?
from Japan. Thank you Jhonny. And If you don't mind me asking please let me know
why this time LDN is not listed? It is not that good any more? Because I've just ordered one .
Hello, I thought about adding LDN to this list but I wanted to keep it simple for people new to M.E. I think its still very helpful for some people.
Ive always wanted to visit Japan. 😊
@@fight4me747 Wow! thank you so much for your prompt reply! And I'm so happy to know you are interested in japan.
On Monday 13.6.2023 I am 100%.
2.4.2019 evrything starts and on 10.9.2019 I was on 19.9% my lowest point....
It's crazy that I have it all back and you are stll in this.
I think it's all about reduced blood flow in the brain...
With love, Mike
Making the videos must be incredibly tough. Thanks
Do you have any advice on heat tolerance? It's warming up in UK and I'm finding it difficult
Hugs
I'd def post more often if my health permitted. I don't have any advice other than try to stay cool. Some people even wear cooling vests.
Just checking to see how you are doing.
Hey there! Thanks, Im doing ok. Just trying my best to be healthy.
❤❤
What is your opinion on all these videos regarding recovery and "adjustment periods"?. So many push exercise within your baseline. But that's difficult when sometimes I hit my target HR just standing up, while other times it takes an extremely slow walk to do it.
I think most of the studies and data show that exercise is TERRIBLE for people with M.E.
Thank you. I am so thankful I found your videos. I hope you continue to do them. I know dealing with ME makes it difficult.
What are your thoughts on mobility aids for ME? Wondering which help with conserving our energy and which could ultimately use more energy. I have 4 grandchildren and want to continue being a part of their lives. I currently only leave the house about once a week, mostly for appointments and groceries.
How do you find a Dr that once they diagnose you won't do anything else
ME is basically anxiety nothing else
Thats a silly statement that is rejected by science.
CPET Testing, PEM, MRI's, Tilt Table Testing and blood biomarkers all prove your comment wrong. Why speak on something you clearly know nothing about?
I have Me/ CFS and I want to get married one day but I'm afraid my condition will not allow
I got married 10 years after I got ME and had a baby too. Put yourself out there when you can. I’m still really sick though.
@@lysas781 i will do that. thanks
Test for genetic Ataxias
What is this
I don't believe there are good treatments for this disease. I've done so so many alternative protocols it's unreal. Never had real results. That's one thing you say Johnny that I really don't agree with. You seem to think that you just keep looking till you find a doctor who offers treatment. First of all I don't even believe that if I went around looking for doctors that would be helpful. It would cause me so much stress so much overwhelm that I would just get even sicker if that's possible. I wish you wouldn't dangle that like a carrot that people should just keep on looking for a doctor who has some sort of treatment. I want to ask you, what kind of treatment okay? Because if you're talking about an American Medical Association doctor AMA they have nothing Johnny and you know that. The only thing you can do is with your own money try holistic alternative type of remedies. Anyways that's just really important for me Johnny to share with you. Because sometimes you have to keep the doctor you have because he offers other type of help regarding other issues that have Arisen and only that doctor will deal with it. But he doesn't deal with CFS /ME. Anyways that does not mean I do not appreciate you. I appreciate you for having this channel here and hopefully a community where we can understand each other just how much it sucks to have this Illnes.
Hello Kavita, I understand your frustration. Ive been treated with LDN, coQ10, probtiocs and had so much testing done by a competent doctor, they found I also have CIRS and have been given treatment for that. They also found I have a couple other smaller issues I take supplements for. If I had given up and accepted what my previous un-interested doctors said/did I would be in really really bad shape. None of my videos will be a one size fits all and I understand that. I hope you do too.
He’s suggesting people try and find the treatment they deserve. It can make a difference. Not sure its fair to say hes “dangling that like a carrot” or to suggest he “knows” there is no treatment. Many people have done really well taking LDN. Something he mentioned several years ago.
@@fight4me747 hey Johnny thanks for replying!!
Are these things you are taking or doing given by an MD??. I have tried, as I said so many Natural and "Holistic" protocols. I've changed my eating and truly nothing has touched the utter Fatigue. I have never met an MD who had the knowledge of this illness.
I am in no way upset at you. I just find that if one has severe symptoms, to say keep looking till you find a Dr. Who can offer treatment, is like finding a needle in a haystack. Can you PLEASE Explain the one called LDN and CIRS. THANKS.
What is an interesting aspect of being so ill is if one has COMPLEX PTSD from a very traumatic childhood, that can also Cause all kinds of physical disease and pain. There is a book called 'THE BODY KEEPS THE SCORE' The title says it all. It's something that can be a double edge sword. What came first cfs/me or the body/brain is affected
By TRAUMA.
All I know is I definitely have CFS/ME and it's morphed into so many problems. Degenerative Disc Disease,
Neuropathy, and ending up bed bound. The greatest thing is recently I got a mobility scooter 🛵. A life changer. Thank you for everything you do Johnny.
I just am frustrated with false hope. I got more relaxed when I stopped LOOKING for Answers.I am 40 years living with this. As I've gotten older it's gotten worse. I had to stop so many things I loved. No more Motorhoming around America. How are you feeling Jonny? Bless everyone who has this illness💙💜
@@Anchor7 HI Anchor. Please try to understand. I have had CFS/ME for 40 years. I have been told so many times that a certain protocol will work for huge healing. It has not been effective. The truth is that most regular MD doctors first of all don't even believe that this is a real illness and if you find one that does they don't offer you any treatment that I have found. So Johnny replied to me about the two things that have helped him and they are two things I have never heard of. So, I wasn't trying to be rude I was simply trying to say it can be like dangling a carrot in front of somebody and then they'll go Try this and then they'll go try the next carrot and sooner or later it becomes so overwhelming and so stress-inducing you get sick just by searching for some answers and help. So all I ask of you is not to make such a big deal out of it. I am not staying Johnny is wrong or bad to do anything he wants to do that was just my feedback from my experience. So try to see it from both sides of the coin. I meant no harm by it at all just an additional way of seeing things that are suggested. I hope you are well and taking good care of yourself
@@kavitadeva I totally understand where you are coming from. I also know all to well how hard it is to seek proper help when you are ill.
If you look through the videos Ive made, there is one on LDN. Its older and I may need to update it since a lot more has been learned since then. But, its basically a pill people take and its helped many with symptoms. CIRS is “Chronic Inflammatory Response Syndrome” which is a totally different illness from ME but has overlapping symptoms.
Thanks for watching, hope you feel ok and please remember, I know many things that I say wont work for everyone. But I do them in case it can help even ONE person with this terrible disease. We all deserve better.