Thought I was crazy. Felt everybody thought I was lazy or lying. When you go a few days without taking a shower. Missing out on everything. Then you go to CZcams and see all these people dealing with the same thing. People suck. I was denied my disability calm for work and I’m on the verge of losing my job. Nobody really understands or seems to care. People act like it’s nothing. So I just keep to myself.
I'll always remember the day that my trust in the medical profession was shattered forever, when one doctor dismissed me as having health anxiety and a second gave the diagnosis of "emotionally unstable personality disorder," telling me to do more exercise. To say I felt humiliated, confused and ashamed is an understatement. I didn't have a clue what was happening to me. I wish I'd found your channel then, because I wasn't too bad and might have recovered had I NOT followed doc's advice. Sadly I'm now a lot worse. I'm not bed bound, but I can barely walk, stand or do basic tasks. I have to rest constantly, but try to move regularly to avoid complications like dvt. My family cares about me, but they may as well not bother since they just don't understand, or try to. My son doesn't believe I'm ill. My mum keeps sending videos of people who have "miraculously recovered", as if that's going to help me in any way. I've tried everything to get better, spent thousands on suppliments and diet changes. The most I've been able to do is manage certain symptoms.
Wow! I have been going thru this for the past 4 years. I am taking supplements and eating good. I have spent most of the last 4 years in bed. It is even hard to walk. No one understands. You are such a blessing! This is the 1st time I have heard of this. I seriously have to push myself every day to do anything. B1 Benfotiamine and B vitimins, a good probiotic, vitamin D and K have helped a little. Curcumin is good too. Don't give up. Spend time in nature and sit in the sun helps. Pray and seek God for wisdom in knowing what to do. I have drawn much closer to the Lord during this time of suffering. I spend time with him and reading the Psalms is comforting. Ist and 2nd Peter talks a lot about suffering. 1st, 2nd and 3rd John gives me peace. Psalm 103, Psalm 23 and 27 and Psalm 91 are good. Draw close to God and he will draw close to you. God bless you, encourage you and strengthen you. ❤
11:20 About a month or so ago I was sent to a Vascular doctor for yet another test. He treated me so badly I cried for two days. He made me feel mental and I’ve always been very level headed. I get it and I hate you went through that at such a young age.
Thank you for this video. I am also close to 40, and developed this in my 20s. Finally worked with a doctor this year that believed me and confirmed my diagnosis (along with fibro, major depression, etc) and has put me in the right direction with things. I’m grateful. It’s nice to come across videos like this, in which you feel less alone. Hope you continue to feel better and stronger with each day.
Thank you ❤ I wish there had been this channel in 1990/91 when I had no idea what was going on 😢 I’d never even heard of ME and was treated appallingly by medics until being diagnosed by a neurologist in 93/94.
Sorry to hear that. I know how you feel, part of the reason I created the channel was because I couldn't find ANYTHING online about ME or how to get help. Terrible feeling.
The most hurtful thing for me is that I don’t want to change. Same personality, pretty smart love to solve problems and get things done and this disease is miserable, infected with covid 2021 . Reality has set in and I’m mourning who I was.
Yes, I can understand mourning the YOU that WAS! I don’t know your age, but I also do the same, especially since I’m entering my senior years and want to do and look like the ME that WAS!! I think what we have to do is envision a new us, and start accepting the vision of who that will be? Try to create that NEW persona as hard as that may BE!!
Its incredible how debilitating this disease is and the impact it has on our lives yet nothing has been done about it. I have lost faith in humanity from this. To think children are suffering with this illness and left to struggle. Its unbelievable really.
My first flare age 25. I’ve battled it for decades and now at 59, i was just turned down for SSDI. The rage I feel toward our healthcare system is infinite.
Hey there 3 years after you published this video it’s still useful and encouraging to new people. I’m in So Cal too. Since the bird app went down, I’m looking for other places to hang with my peeps. Hang in there. Big hugs.
You are a blessing to this community, Dr. KD! Your openness and honesty, and ability to relate and explain how this condition affects a human being is refreshing! Especially to those that don’t have the support that you and I do! When I first contracted this disability, I was like you teaching full-time, happy, taking care of my home, had a social life, played tennis on the weekends, etc.! Unlike you I was fortunate to have had a chance to raise my daughter and was past the dating years! I was in my mid 50s and retired early from West Park, (loved my job!) where many of the teachers and especially the office staff kept saying, but you look fine! What’s the matter? Sometimes after school I had to turn the lights off and lie down on the carpet, just to clean up the room and drive home! I was totally wiped out! again, what you’re doing is throwing out a lifesaver to those that are confused, alone, and needing support! Well done, Johnny!
But the most painful thing is having your family around you and you can not enjoy them but you have to be strong for them and saying don't worry i m fine trying not to hurt'm or make'm worry but they know it ......
Hey what you said about, “How only you can help yourself to get better” that resonates with me. I have been a single parent of three children who are all on the spectrum of ADD, autism and ADHD and I had no one. I never had parents or sisters etc and I did get to the end of my resolve. I have suffered from depression and so many other issues. I have brought my children up and they are successful and they thrive. I had no family I did it all by myself so I say to myself in a good day that I’m my hero. I commend anyone with M.E. They are my heroes because we deal with so much and we do it alone really because we have to try and explain to anyone and we get judged and you do help and I thank you and us with all these issues keep strong and much love xxxx❤
Took me 9 years to find out I have ME. I got diagnosed with fibro and sent home told to exercise. Me believing in that as the cure is what has made me worsen over the years.
The right supplements help tremendously, or so it was for me, seeing a good naturopath is hugely helpful/curative. Diet, mood and healthy relationships also very important. Reflexology helped me a lot too, I was cured for 6 years, now I'm in a small relapse due to over-work but it's much better than my first experience. Disciplined diet is essential too. Yes family help is so essential!
@@fight4me747 the supplements that helped me were/are: NAC, ubiquinol, and taurine. Also bioflavinoids, Tru Niagen and Resvera Pro. I alternate between the first three and the last three; all help with mitochondria function under the assumption that the cells are not producing energy - this was my issue, it may well be the same issue for many others with ME/CFS. Good luck!
I am so sorry for how you were treated especially by the medical staff. Not that mistreatment from family and friends isn't hard but to be treated the way you say that female doctor from L.A. treated you. . .that is just so upsetting and disappointing that this came from a medical professional. Thank you for sharing your story and for making this channel. It def has been a wonderful resource for me.
Thank you for your videos, your help and encouragement! It is thirty years now that I never fully recovered from a bronchiopneumonia caused by chlamydia. I always knew there was something going on just couldn't figure out what it was. Twenty years ago some surgery set it really on and from then I continuesly got worse. Everything you talk about I experienced myself during those years. Even though I am living on another continent. When I found out about ME/CFS as an accepted desease by the WHO and realized where I was heading to I was devastated. Although deep down I had always known. Your videos helped coping with this utter feeling of loneliness, the despear of feeling abandoned and let down by nearly everyone. You shared all the information you had and gave me an idea of what do to help myself and where to find help by others. It is soothing to know that there are other people like myself and I am not alone. My father as the only member of my family understood what ME/CFS means when I showed him one of your videos. And I was really lucky to find a husband during the last (my worst!) years who is always supportive and loving even in the darkest days. Stay safe and thank you for your work!
Thank you so much for this video ❤. I’m 25 now and I relate so well to everything you just said. If it weren’t for my Lord Jesus Christ I would not be here.
You have a good heart and are very informative. I have suffered from ME/CFS for many years. I am presently experiencing the worst flare I have had in many years. Listening to your talks helps put everything back into perspective. Thank you.
Thank you so very much for your video. It feels so good to meet someone else who has walked in my exact shoes but at the same time bad because I don't want anyone else to have to go through this horrible disease! Medical doctors need more education and there needs to be more research done. So much potential is lost because we as a society are failing to diagnose and treat. It took me over a decade to finally get a diagnosis, and when I did no one told me. I had to read it in my medical records 4 years later. I've lost decades of my life feeling like I was losing my mind and or slowly dying from some terminal disease that had yet to be found. Everything you said it spot on!!!
Oh my gosh.....I remember going to the doctor's my whole life as an adult and being told "nothing shows up on your blood tests" it must be depression....why do doctors always assume that it's "this or that".....and yeah I've had to be my own advocate for my health.....I'm 61 years old and I have a doctor who is really trying to help me.....but a lot of the things I did to help myself happened by accident or trial and error.....
I think it's because they earn money by prescribing regular meds, so if there's a condition they can't easily medicate, they will make one up. Depression is an easy explanation for a condition that doesn't show up in blood tests and an easy and relatively safe way to medicate a person x
We are not quitting on life… That’s the main theme I keep trying to tell people I know… I’ve had some religious people say it’s all in your heart (or your head!).... in other words you’re causing this condition (inflammation in brain and spinal cord). Devastating illness, but the response we get from people that’s adding insult to injury!
This is when someone describes a similar version of my own life. I completely get this, and I offer virtual hugs to all those going through the same. I’m sadly not expecting to see a cure in my own lifetime, but I just hope it gets better for future generations xxxx
It’s bothering me too. Now. I know why me wise, but that’s a different story... I’m listening to you. I’m 64 now. I have had an amazing life until 14 years ago when I caught the virus.
Thank you for sharing and putting these videos out. I’m so happy you have family support. I have been in a flare all summer now and feeling very discouraged. Finding my baseline is challenging for me.
I totally understand being the "motivator" in the family and not receiving it from your family or certain friends. Then add on the lack of motivation you feel towards your health since you're not getting better like everyone thinks you should. It really hurts.
Thanks for your videos which I came across the other day!! I can well aquaint with what you say about family not understanding or being supportive or wanting too be educated!! Ive now stopped trying with that!! Im a Christian and if it wasn't for Him and my online forum I couldn't have gone on!! Thanks for the videos, they're informative and a lifeline for people!! Jx 🙂👍
Thank you for sharing this. You have articulated your journey so well and as someone who is going through ME just now, I am able to recognise so much of your journey within my own. Especially with regards to people not understanding and not being the leader I used to be for my family. I went from running 3 miles 3 times a week and doing 3 sessions of 500 burpees each to being unable to walk 1 mile without my body shutting down. Now I can barely even do that. They have pushed antidepressant medication on me which I have refused as I’ve tried it before and it made me very ill. Yes, my mood is low and I am more anxious but that is a normal response to your body being constantly under attack with debilitating fatigue, brain fog and blood pressure issues! The doctors (in the UK) are completely incapable of treating this. The Dr said to me “I’m not saying it’s all in your head but…” lol. The ignorance is mind blowing!
I've been lurking around your channel for quite a while now. I just want to say thank you, for sharing your experience and thoughts, and for how you do it - in such a calm and easily digestible way. It really helps helps when you have brainfog and have a hard time listening to things. I've suspected that I have ME for years now, but nobody has taken that suspicion seriously. Thankfully they have been takning me seriously as a patient, just now my thoughts on ME. I've been around the hole carousel of doctors and specialists, with normal blodtests and normal biopsies and normal scans and whatever they put me thorough. And now, finally, just a couple of day ago, I got my doctor to listen when I said; "hey, you put me thought all these tests, for which I am grateful and I recognize your good intent, but, this is what I think it is, and it doesn't show up on tests, so maybe that's why I feel the way I feel and everything looks normal". So he finally agreed to meet with me and go over the criteria together. I don't know if I should feel relieved or terrified. It's a hard thing, holding out hope for answers for years and years (over 5 now), without getting answers. I feel like I am on the verge of giving up looking for them. It has lead nowhere so far, and yet, if I don't look, who is going to? Catch 22! Sorry for rambling, but it felt good to get this stuff out. I wish there was a faster way for people with ME to get to a diagnosis.
Thank you for sharing this. Like you I had to be my own advocate and still live alone in a room as everything I've tried unfortunately hasn't worked. I remember waiting for the appointment with the doctor that was going to 'fix it's all, but had the same look. I felt heartbroken all over again. Hope is something I need but is also a scary place as it's been shattered so many times. X love from London uk xx
general practitioners are garbage and a waste of money i dont have shelling out to insurance that pays for nothing. unfortunatly after years (i am now in my 50's) i've given up on my house for an apt, my fulltime job for pt. i can barely walk 60% of the time, I hit every symptom over the past couple years but can't get my doctor to follow through with any diagnoses or help. I decided to see a therapist because i am ready to end this all. the therapist told me i had to much going on right now to help. please, anyone help me with my next step? where would you go from here (usa) other than an attempt because Im out of excuses not to.
Hi Rebecca, Please check out the video I made on LDN. Thats a good place to start. Talk to your doctor before taking anything, but b12, high potency probiotics, omega 3 and milk thistle has helped me a bit.
17:31 My heart breaks for people I’ve met struggling alone. I can’t imagine. Do you have a video about what’s helped you along the way for those of us just getting started?
Hey there, not specifically but I do have videos on things I take and do that have helped. Check out the video on LDN, Wearables and supplements I have taken. Hopefully it helps
Thank you for doing these videos! They are inspiring to me and it helps me through this awful disease!! You have joint pain but I have muscle pain all over and it's quite debilitating too. I only take LDN for it and it helps a little. I also take Ativan for my nervous system which is shot. A prescribed sleep medication nightly and an antidepressant due to my circumstances. Is there any other medicines that you take besides LDN that have been helpful? I also take low dose Ritalin for energy and clarity. Which seems to help quite a bit! Any helpful medicines or supplements you can recommend would be helpful. I too live in Southern California 😎 Thank you and blessings to you and your family!
Hey there Ron, the only other impactful things I take are high potency probiotics (visbiome) and a cholesterol binder which helps with toxins a bit. I also try and soak up as much of this Socal sun in order to keep my vitamin D levels high. Means a lot to me that these videos are helpful in any way, thanks.
Hey, I think I might have ME/CFS but I'm not really sure. I've had the core symptoms for almost 6 months now. I was just wondering what your activity level is like now? What would a normal day be like or what would cause you to crash? I loved your video and subscribed.
Hi Elizabeth Im glad you enjoyed the video and thanks for the sub. My activity level is still not great. I've honestly had to just learn how to adapt. I enjoy different things now. Unfortunately everyday is different. Normal days are what I hope for everyday but with ME/CFS each day has different hurdles. Crashes often come from doing too much physical activity. So i have to monitor my activity levels a lot. Lack of sleep for a few days in a row cause crashes every time for me. Gut issues cause severe crashes for me too.
Mine too! I never had idols, but if there was a poster of the OMF scientists, I would hang it on my wall! They are my hope, and light in the end of the tunnel! 🙏❤🙏
I discovered I couldn't exercise when I was 31 and it scared me a lot but I haven't been diagnosed with Chronic Fatigue Syndrome. To this day I don't have any answers. I suspect it is being caused by a sexually transmitted infection called Chancroid because I have had a bump on my genitals which I thought was Herpes but later on ruled it out with a blood test. I have talked to doctors about the std and the Chronic Fatigue Syndrome and I have gotten no answers. They believe that one course of antibiotic is enough to clear it out but I don't think that can be true.
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins. The first consequences were: pain in the neck, fatigue, sore throat, depression, ..... After 3 months without a microwave oven these symptoms disappeared. Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example. If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study! People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation. I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.
![Life with ME/CFS | Professor Warren Tate [Chronic Fatigue | ME]](http://i.ytimg.com/vi/GZh_dv15gvg/mqdefault.jpg)
And we need to educate our doctors too, if they're willing to listen.
THIS!
Thought I was crazy. Felt everybody thought I was lazy or lying. When you go a few days without taking a shower. Missing out on everything. Then you go to CZcams and see all these people dealing with the same thing. People suck. I was denied my disability calm for work and I’m on the verge of losing my job. Nobody really understands or seems to care. People act like it’s nothing. So I just keep to myself.
It's awful, for sure. "Lazy, crazy, making it up"--yeah right. 😢
I'll always remember the day that my trust in the medical profession was shattered forever, when one doctor dismissed me as having health anxiety and a second gave the diagnosis of "emotionally unstable personality disorder," telling me to do more exercise. To say I felt humiliated, confused and ashamed is an understatement. I didn't have a clue what was happening to me. I wish I'd found your channel then, because I wasn't too bad and might have recovered had I NOT followed doc's advice. Sadly I'm now a lot worse. I'm not bed bound, but I can barely walk, stand or do basic tasks. I have to rest constantly, but try to move regularly to avoid complications like dvt. My family cares about me, but they may as well not bother since they just don't understand, or try to. My son doesn't believe I'm ill. My mum keeps sending videos of people who have "miraculously recovered", as if that's going to help me in any way. I've tried everything to get better, spent thousands on suppliments and diet changes. The most I've been able to do is manage certain symptoms.
Revolting,isn't it?
Wow! I have been going thru this for the past 4 years. I am taking supplements and eating good. I have spent most of the last 4 years in bed. It is even hard to walk. No one understands. You are such a blessing! This is the 1st time I have heard of this. I seriously have to push myself every day to do anything. B1 Benfotiamine and B vitimins, a good probiotic, vitamin D and K have helped a little. Curcumin is good too. Don't give up. Spend time in nature and sit in the sun helps. Pray and seek God for wisdom in knowing what to do. I have drawn much closer to the Lord during this time of suffering. I spend time with him and reading the Psalms is comforting. Ist and 2nd Peter talks a lot about suffering. 1st, 2nd and 3rd John gives me peace. Psalm 103, Psalm 23 and 27 and Psalm 91 are good. Draw close to God and he will draw close to you. God bless you, encourage you and strengthen you. ❤
11:20 About a month or so ago I was sent to a Vascular doctor for yet another test. He treated me so badly I cried for two days. He made me feel mental and I’ve always been very level headed. I get it and I hate you went through that at such a young age.
Sorry that happened to you. Its an awful feeling. Hang in there and find a Doc that will respect you!
Thank you for this video. I am also close to 40, and developed this in my 20s. Finally worked with a doctor this year that believed me and confirmed my diagnosis (along with fibro, major depression, etc) and has put me in the right direction with things. I’m grateful. It’s nice to come across videos like this, in which you feel less alone. Hope you continue to feel better and stronger with each day.
Hello Carrie, Glad you found a good Doctor! Thats a major step in the right direction!
Thank you ❤ I wish there had been this channel in 1990/91 when I had no idea what was going on 😢 I’d never even heard of ME and was treated appallingly by medics until being diagnosed by a neurologist in 93/94.
Sorry to hear that. I know how you feel, part of the reason I created the channel was because I couldn't find ANYTHING online about ME or how to get help. Terrible feeling.
The most hurtful thing for me is that I don’t want to change. Same personality, pretty smart love to solve problems and get things done and this disease is miserable, infected with covid 2021 . Reality has set in and I’m mourning who I was.
Yes, I can understand mourning the YOU that WAS! I don’t know your age, but I also do the same, especially since I’m entering my senior years and want to do and look like the ME that WAS!! I think what we have to do is envision a new us, and start accepting the vision of who that will be? Try to create that NEW persona as hard as that may BE!!
Its incredible how debilitating this disease is and the impact it has on our lives yet nothing has been done about it. I have lost faith in humanity from this. To think children are suffering with this illness and left to struggle. Its unbelievable really.
I hope you have a better day tomorrow. My son has been sick since 13! Breaks this mum’s heart
My first flare age 25. I’ve battled it for decades and now at 59, i was just turned down for SSDI. The rage I feel toward our healthcare system is infinite.
I lived with blame. That’s why I’m a loner... That doesn’t help this situation. 💜
I don't need to know you in person to say having M.E. is NOT your fault. Hope all is well
Hey there 3 years after you published this video it’s still useful and encouraging to new people. I’m in So Cal too. Since the bird app went down, I’m looking for other places to hang with my peeps. Hang in there. Big hugs.
When people don’t understand, I liken it to being water boarded and people standing around confused as to why you can’t breathe...
You are a blessing to this community, Dr. KD! Your openness and honesty, and ability to relate and explain how this condition affects a human being is refreshing! Especially to those that don’t have the support that you and I do! When I first contracted this disability, I was like you teaching full-time, happy, taking care of my home, had a social life, played tennis on the weekends, etc.! Unlike you I was fortunate to have had a chance to raise my daughter and was past the dating years! I was in my mid 50s and retired early from West Park, (loved my job!) where many of the teachers and especially the office staff kept saying, but you look fine! What’s the matter? Sometimes after school I had to turn the lights off and lie down on the carpet, just to clean up the room and drive home! I was totally wiped out! again, what you’re doing is throwing out a lifesaver to those that are confused, alone, and needing support! Well done, Johnny!
Thank you for sharing your story. I can relate! This is such a painful and lonely journey.
True
It really is.
But the most painful thing is having your family around you and you can not enjoy them but you have to be strong for them and saying don't worry i m fine trying not to hurt'm or make'm worry but they know it ......
Hey what you said about, “How only you can help yourself to get better” that resonates with me. I have been a single parent of three children who are all on the spectrum of ADD, autism and ADHD and I had no one. I never had parents or sisters etc and I did get to the end of my resolve. I have suffered from depression and so many other issues. I have brought my children up and they are successful and they thrive. I had no family I did it all by myself so I say to myself in a good day that I’m my hero. I commend anyone with M.E. They are my heroes because we deal with so much and we do it alone really because we have to try and explain to anyone and we get judged and you do help and I thank you and us with all these issues keep strong and much love xxxx❤
Took me 9 years to find out I have ME. I got diagnosed with fibro and sent home told to exercise. Me believing in that as the cure is what has made me worsen over the years.
Yeah, isn't there a Hippocratic oath that doctors take about NOT causing harm? Pushing exercise for ME patients is criminal.
Its nuts to say it's in my head.
The right supplements help tremendously, or so it was for me, seeing a good naturopath is hugely helpful/curative. Diet, mood and healthy relationships also very important. Reflexology helped me a lot too, I was cured for 6 years, now I'm in a small relapse due to over-work but it's much better than my first experience. Disciplined diet is essential too. Yes family help is so essential!
What supplements worked for you?
@@fight4me747 the supplements that helped me were/are: NAC, ubiquinol, and taurine. Also bioflavinoids, Tru Niagen and Resvera Pro. I alternate between the first three and the last three; all help with mitochondria function under the assumption that the cells are not producing energy - this was my issue, it may well be the same issue for many others with ME/CFS. Good luck!
“I’m in a bad flare right now; I feel awful.” She said.
Her friend replied, “Sorry to hear it hon; so are you hosting Thanksgiving this year?”
I am so sorry for how you were treated especially by the medical staff. Not that mistreatment from family and friends isn't hard but to be treated the way you say that female doctor from L.A. treated you. . .that is just so upsetting and disappointing that this came from a medical professional. Thank you for sharing your story and for making this channel. It def has been a wonderful resource for me.
Thank you for your videos, your help and encouragement!
It is thirty years now that I never fully recovered from a bronchiopneumonia caused by chlamydia. I always knew there was something going on just couldn't figure out what it was. Twenty years ago some surgery set it really on and from then I continuesly got worse.
Everything you talk about I experienced myself during those years. Even though I am living on another continent.
When I found out about ME/CFS as an accepted desease by the WHO and realized where I was heading to I was devastated. Although deep down I had always known.
Your videos helped coping with this utter feeling of loneliness, the despear of feeling abandoned and let down by nearly everyone.
You shared all the information you had and gave me an idea of what do to help myself and where to find help by others.
It is soothing to know that there are other people like myself and I am not alone.
My father as the only member of my family understood what ME/CFS means when I showed him one of your videos. And I was really lucky to find a husband during the last (my worst!) years who is always supportive and loving even in the darkest days.
Stay safe and thank you for your work!
Im very happy to hear that you have an understanding husband and father! Hope you are well
Thank you so much for this video ❤. I’m 25 now and I relate so well to everything you just said. If it weren’t for my Lord Jesus Christ I would not be here.
You have a good heart and are very informative. I have suffered from ME/CFS for many years. I am presently experiencing the worst flare I have had in many years. Listening to your talks helps put everything back into perspective. Thank you.
Do you have alot of muscle pain
Thank you so very much for your video. It feels so good to meet someone else who has walked in my exact shoes but at the same time bad because I don't want anyone else to have to go through this horrible disease! Medical doctors need more education and there needs to be more research done. So much potential is lost because we as a society are failing to diagnose and treat. It took me over a decade to finally get a diagnosis, and when I did no one told me. I had to read it in my medical records 4 years later. I've lost decades of my life feeling like I was losing my mind and or slowly dying from some terminal disease that had yet to be found. Everything you said it spot on!!!
Oh my gosh.....I remember going to the doctor's my whole life as an adult and being told "nothing shows up on your blood tests" it must be depression....why do doctors always assume that it's "this or that".....and yeah I've had to be my own advocate for my health.....I'm 61 years old and I have a doctor who is really trying to help me.....but a lot of the things I did to help myself happened by accident or trial and error.....
I think it's because they earn money by prescribing regular meds, so if there's a condition they can't easily medicate, they will make one up. Depression is an easy explanation for a condition that doesn't show up in blood tests and an easy and relatively safe way to medicate a person x
When they can't figure it out they blame you. In this day how do they not know about this??? Mine came post Cytomegalovirus.
Thank you!
When did you notice you had Cytomegalovirus? I have it too. It's affecting me. How are you doing now?
We are not quitting on life… That’s the main theme I keep trying to tell people I know…
I’ve had some religious people say it’s all in your heart (or your head!).... in other words you’re causing this condition (inflammation in brain and spinal cord). Devastating illness, but the response we get from people that’s adding insult to injury!
Its so hard dealing with people like that!
This is when someone describes a similar version of my own life. I completely get this, and I offer virtual hugs to all those going through the same. I’m sadly not expecting to see a cure in my own lifetime, but I just hope it gets better for future generations xxxx
It’s bothering me too. Now. I know why me wise, but that’s a different story... I’m listening to you.
I’m 64 now. I have had an amazing life until 14 years ago when I caught the virus.
Thank you for sharing this supportive video. I really needed to hear this.
I don’t have any friends, family or co workers. I used to, but I moved on and they’re all gone. I’m on my own.
Im sorry to hear this. Maybe try some ME support groups on FB? At least can chat with people who will understand.
You have my thoughts and compassion all the way from Sweden! ❤❤❤
I hope we will have some medicine or treatment in a couple of yrs! 🙏
Thank you for sharing and putting these videos out. I’m so happy you have family support. I have been in a flare all summer now and feeling very discouraged. Finding my baseline is challenging for me.
I totally get it. 😪
I totally understand being the "motivator" in the family and not receiving it from your family or certain friends. Then add on the lack of motivation you feel towards your health since you're not getting better like everyone thinks you should. It really hurts.
Thanks for your videos which I came across the other day!! I can well aquaint with what you say about family not understanding or being supportive or wanting too be educated!! Ive now stopped trying with that!! Im a Christian and if it wasn't for Him and my online forum I couldn't have gone on!!
Thanks for the videos, they're informative and a lifeline for people!! Jx 🙂👍
Thank you for sharing this. You have articulated your journey so well and as someone who is going through ME just now, I am able to recognise so much of your journey within my own. Especially with regards to people not understanding and not being the leader I used to be for my family.
I went from running 3 miles 3 times a week and doing 3 sessions of 500 burpees each to being unable to walk 1 mile without my body shutting down. Now I can barely even do that.
They have pushed antidepressant medication on me which I have refused as I’ve tried it before and it made me very ill. Yes, my mood is low and I am more anxious but that is a normal response to your body being constantly under attack with debilitating fatigue, brain fog and blood pressure issues! The doctors (in the UK) are completely incapable of treating this. The Dr said to me “I’m not saying it’s all in your head but…” lol. The ignorance is mind blowing!
Yes, that's it. We have to be so grateful for out caregivers. 💁♀️from Austria
I've been lurking around your channel for quite a while now. I just want to say thank you, for sharing your experience and thoughts, and for how you do it - in such a calm and easily digestible way. It really helps helps when you have brainfog and have a hard time listening to things.
I've suspected that I have ME for years now, but nobody has taken that suspicion seriously. Thankfully they have been takning me seriously as a patient, just now my thoughts on ME. I've been around the hole carousel of doctors and specialists, with normal blodtests and normal biopsies and normal scans and whatever they put me thorough. And now, finally, just a couple of day ago, I got my doctor to listen when I said; "hey, you put me thought all these tests, for which I am grateful and I recognize your good intent, but, this is what I think it is, and it doesn't show up on tests, so maybe that's why I feel the way I feel and everything looks normal". So he finally agreed to meet with me and go over the criteria together. I don't know if I should feel relieved or terrified. It's a hard thing, holding out hope for answers for years and years (over 5 now), without getting answers. I feel like I am on the verge of giving up looking for them. It has lead nowhere so far, and yet, if I don't look, who is going to? Catch 22! Sorry for rambling, but it felt good to get this stuff out. I wish there was a faster way for people with ME to get to a diagnosis.
It is a catch 22. The diagnosis phase is a difficult one. I hope you find relief soon.
Thank you for sharing this. Like you I had to be my own advocate and still live alone in a room as everything I've tried unfortunately hasn't worked. I remember waiting for the appointment with the doctor that was going to 'fix it's all, but had the same look. I felt heartbroken all over again. Hope is something I need but is also a scary place as it's been shattered so many times. X love from London uk xx
general practitioners are garbage and a waste of money i dont have shelling out to insurance that pays for nothing. unfortunatly after years (i am now in my 50's) i've given up on my house for an apt, my fulltime job for pt. i can barely walk 60% of the time, I hit every symptom over the past couple years but can't get my doctor to follow through with any diagnoses or help. I decided to see a therapist because i am ready to end this all. the therapist told me i had to much going on right now to help. please, anyone help me with my next step? where would you go from here (usa) other than an attempt because Im out of excuses not to.
Thank you
So glad you did this channel 👏
Thank you for sharing! I definitely can relate. It’s been 2 1/2 years for me. Would you be willing to share some things that were helpful for you?
Hi Rebecca, Please check out the video I made on LDN. Thats a good place to start. Talk to your doctor before taking anything, but b12, high potency probiotics, omega 3 and milk thistle has helped me a bit.
I have no one and no support, lm lucky to be out in of bed 7 hours in a day, housebound chairbound. It's very frightening
It's really frightening. I'm on my own too. So hard.
I was a world traveler, a truck driver, AND a jockey🏇🏿
Hee, I am suffering cfs for 8 years now.
Just watched ur video after watching it... .........................I feel little good.
Thanks
17:31 My heart breaks for people I’ve met struggling alone. I can’t imagine. Do you have a video about what’s helped you along the way for those of us just getting started?
Hey there, not specifically but I do have videos on things I take and do that have helped. Check out the video on LDN, Wearables and supplements I have taken. Hopefully it helps
I'm 72 and pretty much on my own. It is so so hard.
@@RamonaMcKean I can’t imagine. Prayers 🙇🏻♀️
Thank you for doing these videos! They are inspiring to me and it helps me through this awful disease!! You have joint pain but I have muscle pain all over and it's quite debilitating too. I only take LDN for it and it helps a little. I also take Ativan for my nervous system which is shot. A prescribed sleep medication nightly and an antidepressant due to my circumstances. Is there any other medicines that you take besides LDN that have been helpful? I also take low dose Ritalin for energy and clarity. Which seems to help quite a bit! Any helpful medicines or supplements you can recommend would be helpful. I too live in Southern California 😎 Thank you and blessings to you and your family!
Hey there Ron, the only other impactful things I take are high potency probiotics (visbiome) and a cholesterol binder which helps with toxins a bit. I also try and soak up as much of this Socal sun in order to keep my vitamin D levels high. Means a lot to me that these videos are helpful in any way, thanks.
How are you now check out ADHD fybromyalgia connection
Just wow!!!
Hey, I think I might have ME/CFS but I'm not really sure. I've had the core symptoms for almost 6 months now.
I was just wondering what your activity level is like now? What would a normal day be like or what would cause you to crash?
I loved your video and subscribed.
Hi Elizabeth Im glad you enjoyed the video and thanks for the sub. My activity level is still not great. I've honestly had to just learn how to adapt. I enjoy different things now. Unfortunately everyday is different. Normal days are what I hope for everyday but with ME/CFS each day has different hurdles. Crashes often come from doing too much physical activity. So i have to monitor my activity levels a lot. Lack of sleep for a few days in a row cause crashes every time for me. Gut issues cause severe crashes for me too.
@@fight4me747 are you able to do things at home? Cook, do dishes etc?
Btw. Dr. Ronald Davis is my hero.
Mine too! I never had idols, but if there was a poster of the OMF scientists, I would hang it on my wall! They are my hope, and light in the end of the tunnel! 🙏❤🙏
Do you have an idea of what brought about your symptoms?
I don't, I def had several bouts of the flu in my early 20s but im not sure if thats what did. Overall it just started creeping up out of nowhere.
Same story for me
My boyfriend is locked down in Perth WA.
Thanks so much but the question is how to get an official diagnosis for cfs
A Doctor will usually rule other things out and make an assessment based on your test results and symptoms.
I discovered I couldn't exercise when I was 31 and it scared me a lot but I haven't been diagnosed with Chronic Fatigue Syndrome. To this day I don't have any answers. I suspect it is being caused by a sexually transmitted infection called Chancroid because I have had a bump on my genitals which I thought was Herpes but later on ruled it out with a blood test. I have talked to doctors about the std and the Chronic Fatigue Syndrome and I have gotten no answers. They believe that one course of antibiotic is enough to clear it out but I don't think that can be true.
Have they gave you the so called chemo antibiotics clarithomicin quilone cause it
Check out the medical medium there might be some answers to this dreadful fatigue.
The cause for me was the microwave oven. This may sound unbelievable: the internet states that the use is harmless or that the danger is cancer or a reduction in vitamins.
The first consequences were: pain in the neck, fatigue, sore throat, depression, .....
After 3 months without a microwave oven these symptoms disappeared.
Consequences are greater the closer the microwave oven is to you: if the oven is right next to your dining table, for example.
If you bring this to your members' attention, those who wish can give it a try and let you know about their experiences. Everyone can now participate in the study!
People will not think much of CFS. Organs are not damaged. It looks more like an internal strangulation.
I don't know if that can be found. The muscles tense under the influence of microwaves (microwave), Hence the pain and the intestines are too tense, which makes digestion poor and too few vitamins are absorbed. In the throat one has pain due to the tensioning of the muscles there. Be careful not to cure other diseases with fatigue for CFS.