35+ years of ME/CFS, intermittent. I appreciate your updates 👍 Mine began with an EBV infection, but post viral inflammation acts the same I suppose. It’s so awful.
Thank you for updating. But, after 10 years of this I just can’t hope anymore. It’s too disappointing. I was told to exercise consistently through every part of this illness and still am told to this day. They also consistently told me it was anxiety and depression. This is in an area that has a world famous ME/CFS clinic but I was never referred to them because apparently I was just “making up” the severity of my symptoms. The hardest part was coming home after these doctors visits to be bedridden for 3 days to a week, remembering how they said I wasn’t “sick enough”. I know others who have been ill before me are seeing improvements, I know you all want to stay positive, but my experience shows me little to nothing has changed, and now my GP is even less interested in discussing with me on this because she has even more patients like me post Covid. I do hope they can take these studies to re educate physicians, but I won’t be one of the people going back to doctors to beg and plead anymore, it’s pointless. If they cared about me getting better or at least being comfortable I wouldn’t have had so many horrific experiences. A lot of them truly want to abuse us because of the stigma, we are “fair game”. Sadly our medical system in the USA is in shambles and more chronically ill patients like us is just putting more pressure on these over worked doctors, and giving them more incentive to take out their aggressions on us - in overt and covert ways.
Gruß aus Deutschland ☺️Ich habe auch CFS/ME .Seit mindestens 15 Jahren sehr stark… Und geht es hier auch so mit den Ärzten. 🥲 ,,Gesundheitsminister- Herr Lauterbach ist eine Katastrophe. 🤨 Ich bekomme auch keine Hilfe und muss alle Nahrungsergänzungsmittel oder Behandlungen selbst bezahlen! 🥺 Alles Gute für dich ❤️
I’m sorry you’ve been afflicted by this for so long. I’ve had Covid twice after getting two vaxes. The first case of Covid was the delta variant. Damn near killed me. I was the energizer bunny before Covid. Now, I’m a shadow of my former fit self. All but closed my business, can only work a few hours to half a day and then I’m cooked for several days, sleeping most of the time. I’ve pretty much lost hope. I tried every protocol out there, including anti HIV drugs at a huge cost. I keep looking for solutions but there just aren’t any.
I get you…. It’s like this in the UK 🇬🇧 too, I’m fed up going to the drs, I started getting new symptoms and every time was sent for blood tests last year I had 16 in total last year. Was diagnosed in 2013 but I know I’ve had it longer… I had glandular fever at 17 and I didn’t find out until I was diagnosed 20 years later! I give up! 🤦🏽♀️
I miss going to school. I miss working. I miss living. I’m in the severe stage and bed-bound 20/24 hours day. 😢 3 years ago it was mild. Thank you for sharing this
I was suffering with spring fatigue when I had my COVID vaccine. It caused massive inflammation in my body and many serious unpleasant neuro symptoms. I now have full blown ME/CFS. Had this since 2021. I'm still worse in the springtime with debilitating fatigue which hopefully will improve soon. Thanks for this as I've been shunned by the medical professional and labelled, they are treating me like I have a psychological problem
I too have been fighting this for about 2-3 years. I had to quit my job in October and I do feel like it’s about 50-50 on whether a doctors going to take me seriously or not. Which is cause tremendous amounts of anxiety, especially when seeing a new doctor or seeing a doctor you’ve seen, but you know doesn’t take you very seriously. Isolation is the worst part of this whole thing to me so just know there’s others out there
@@leslieballard9709 I know exactly how you feel. I'm still working as I don't want to lose my house but struggling very much. It stinks that there's no help out there. Hopefully we will be taken more seriously in the not too distant future
I suffer from MECFS and fibromyalgia. I had cancer 13 years ago and the chemo wrecked my body then two years ago I got long-term Covid and I believe that the two caused the ME. Anyway I just wanted to thank you for this channel. This is an isolating disease. I have had to stop working and don’t see people socially like I wish I could. But it is nice to know you’re not alone and for that, I am grateful. Right now I am seeing a neurologist and sleep specialist to see if I have also developed form of narcolepsy where when I’m sleeping at night my brain doesn’t shut all the way down, therefore causing excessive fatigue and tiredness and now I have developed some deficits. Again, I am thankful for your channel, it gives me more to research and as much as I wouldn’t want anyone else to go through this it does give me a feeling of camaraderie which you don’t know how important that is until you’ve been isolated. Thank you much love. Hope everyone has a good day if you do enjoy it.
27 years me here awaiting sleep test to my father has CFS to but better at 74 than 40 now ime diagnosed autism ADHD heds genes for this rccx gene theory in action blessings
I swear long covid and mecfs are almost the same thing! I have both and fibromyalgia and when people described how they felt I’m like that sounds like me and fibro mixed together and then I got long covid after getting into a better place with my fibromyalgia and cfs and was like dear lord . It hit me like a freight train and it’s going in 4 years. I am praying for treatments and I do all the ones already that have been around. LDN is my best friend along with spoon theory and treatment for my mcas
Good to see u back mate the last month I've actually looked into long covid and its v/close links between mecfs & new treatments which are going to be available due to long covid research...Great update Johnny.
So good to see you!! Thank you for your dedication & persistence to share information & spread awareness! Your advocacy is so important & much appreciated ❤️
Welcome back! 😂I had to laugh(excuse me), you look absolutely thrilled with (i could be wrong)how they seem to try to sweep the "original" under any rug... Well,u put up a "damn" good fight! Your videos,great and straight to the point. My Thanks💞with "tired of being sick and tired"😂and aging and "ole Arthur'(arthritis)😮, it's a wrap! You My man, get the "Award" for Best Video's on this(whatever name next)CFS. Uknow I believe was first mistake.It was so much more "devastating". My Thanks for sharing, I know it took a lot plus🙏bless you all.
I would be curious to see a study where very severe MECFS patients get the intensive chemo therapy that people with multiple myelomas get. My mom had this very severe and debilitating cough that started up randomly after getting covid. The cough wasnt because she couldnt breath or because her throat was itchy. She just went into insan coughing fits that actually caused her spine to fracture. After her immune system was essentially reset due to the bonr marrow being destroyed, she hasn't had that cough return.
I just found your channel. I sure hope for a cure. I have this on top of asperger's. I would take a walk in the woods and never come back if it wasn't for my pets. No one to take care of them. I get my moments of joy from them. We struggle to survive. I also use gratitude, meditation and breathing exercises. I have trouble with food. I mainly eat 3 things. I think a lot of all this is caused by chemicals in our food and things we are exposed to. I wonder if M.E. is more prominent in the US where big corporations own the FDA and allow chemicals that most countries forbid. I think so.
Hello, and thank you so much for the updates! With so much apathy from mainstream doctors, some hope goes a long way! What are your thoughts on the brain re-training 🧠 modality currently being proposed? Thanks 😊, and have a positive day!
Thank you for this update! I'm so glad to see you still making videos! I've started making some of my own, and it is HARD WORK! Gentle hugs and restful wishes.
Thanks for your videos ! It really helps cause here in France it's very tough to find help and answers.. I have a question: Do you know why exactly after a workout during the day, when we didn't really feel exhausted, we still have a night crash with insomnia? It's really frustrating.
My ME is post viral, mono/glandular fever was number number 1 cause of ME/CFS so makes perfect sense LC is very similar to ME because it's from a virus - good news for us but horrendous it's at the expense of LC sufferers and yet the don't tell LC to rest, rest and more rest to hopefully recover.
@@fight4me747 Not really, most people who suffer from CFS has some kind of methylation deficiency regardless if the gene. Most people eat like shit in america
That's strange, the audio is clear when I play it. Could it be your settings in RUclips or your device? If you still struggle with hearing it try the closed captions, it's a message of hope & well worth hearing/reading. Hope you can hear it.
Just sending love to all fellow ME folks❤ you are not alone!❤
Same!! Much love
@@leslieballard9709 thank you❤🥰
💟
❤To all suffers❤
❤Many Thanks as always❤😊
35+ years of ME/CFS, intermittent. I appreciate your updates 👍 Mine began with an EBV infection, but post viral inflammation acts the same I suppose. It’s so awful.
Thank you for updating. But, after 10 years of this I just can’t hope anymore. It’s too disappointing. I was told to exercise consistently through every part of this illness and still am told to this day. They also consistently told me it was anxiety and depression. This is in an area that has a world famous ME/CFS clinic but I was never referred to them because apparently I was just “making up” the severity of my symptoms. The hardest part was coming home after these doctors visits to be bedridden for 3 days to a week, remembering how they said I wasn’t “sick enough”. I know others who have been ill before me are seeing improvements, I know you all want to stay positive, but my experience shows me little to nothing has changed, and now my GP is even less interested in discussing with me on this because she has even more patients like me post Covid. I do hope they can take these studies to re educate physicians, but I won’t be one of the people going back to doctors to beg and plead anymore, it’s pointless. If they cared about me getting better or at least being comfortable I wouldn’t have had so many horrific experiences. A lot of them truly want to abuse us because of the stigma, we are “fair game”. Sadly our medical system in the USA is in shambles and more chronically ill patients like us is just putting more pressure on these over worked doctors, and giving them more incentive to take out their aggressions on us - in overt and covert ways.
Gruß aus Deutschland ☺️Ich habe auch CFS/ME .Seit mindestens 15 Jahren sehr stark…
Und geht es hier auch so mit den Ärzten. 🥲
,,Gesundheitsminister- Herr Lauterbach ist eine Katastrophe. 🤨
Ich bekomme auch keine Hilfe und muss alle Nahrungsergänzungsmittel oder Behandlungen selbst bezahlen! 🥺
Alles Gute für dich ❤️
I’m sorry you’ve been afflicted by this for so long. I’ve had Covid twice after getting two vaxes. The first case of Covid was the delta variant. Damn near killed me. I was the energizer bunny before Covid. Now, I’m a shadow of my former fit self. All but closed my business, can only work a few hours to half a day and then I’m cooked for several days, sleeping most of the time. I’ve pretty much lost hope. I tried every protocol out there, including anti HIV drugs at a huge cost. I keep looking for solutions but there just aren’t any.
Understand you 😢
I get you…. It’s like this in the UK 🇬🇧 too, I’m fed up going to the drs, I started getting new symptoms and every time was sent for blood tests last year I had 16 in total last year. Was diagnosed in 2013 but I know I’ve had it longer… I had glandular fever at 17 and I didn’t find out until I was diagnosed 20 years later! I give up! 🤦🏽♀️
it's good to see you back!!!
Thanks! Good to be back!
I miss going to school. I miss working. I miss living. I’m in the severe stage and bed-bound 20/24 hours day. 😢 3 years ago it was mild. Thank you for sharing this
I was suffering with spring fatigue when I had my COVID vaccine. It caused massive inflammation in my body and many serious unpleasant neuro symptoms. I now have full blown ME/CFS. Had this since 2021. I'm still worse in the springtime with debilitating fatigue which hopefully will improve soon. Thanks for this as I've been shunned by the medical professional and labelled, they are treating me like I have a psychological problem
I too have been fighting this for about 2-3 years. I had to quit my job in October and I do feel like it’s about 50-50 on whether a doctors going to take me seriously or not. Which is cause tremendous amounts of anxiety, especially when seeing a new doctor or seeing a doctor you’ve seen, but you know doesn’t take you very seriously. Isolation is the worst part of this whole thing to me so just know there’s others out there
@@leslieballard9709 I know exactly how you feel. I'm still working as I don't want to lose my house but struggling very much. It stinks that there's no help out there. Hopefully we will be taken more seriously in the not too distant future
Thanks for the update, from a fellow Covid longhauler. I hope these will lead to new therapries and treatments that will help all of us!
Thank you for sharing this information. I'm glad ME is getting some research.
Much needed research!
The musician Ren made a video called troubles 💖 checkout!! About M.E and his journey with it
Oh Lordy. Best of luck to Ren all power to him
I suffer from MECFS and fibromyalgia. I had cancer 13 years ago and the chemo wrecked my body then two years ago I got long-term Covid and I believe that the two caused the ME. Anyway I just wanted to thank you for this channel. This is an isolating disease. I have had to stop working and don’t see people socially like I wish I could. But it is nice to know you’re not alone and for that, I am grateful. Right now I am seeing a neurologist and sleep specialist to see if I have also developed form of narcolepsy where when I’m sleeping at night my brain doesn’t shut all the way down, therefore causing excessive fatigue and tiredness and now I have developed some deficits. Again, I am thankful for your channel, it gives me more to research and as much as I wouldn’t want anyone else to go through this it does give me a feeling of camaraderie which you don’t know how important that is until you’ve been isolated. Thank you much love. Hope everyone has a good day if you do enjoy it.
27 years me here awaiting sleep test to my father has CFS to but better at 74 than 40 now ime diagnosed autism ADHD heds genes for this rccx gene theory in action blessings
I swear long covid and mecfs are almost the same thing! I have both and fibromyalgia and when people described how they felt I’m like that sounds like me and fibro mixed together and then I got long covid after getting into a better place with my fibromyalgia and cfs and was like dear lord . It hit me like a freight train and it’s going in 4 years. I am praying for treatments and I do all the ones already that have been around. LDN is my best friend along with spoon theory and treatment for my mcas
I'm very positive it is. Both are heavily tied in with a virus and align with the "post viral syndrome". Basically it's like polio and post polio.
Thank you for the update.
Good to see u back mate the last month I've actually looked into long covid and its v/close links between mecfs & new treatments which are going to be available due to long covid research...Great update Johnny.
I'm looking forward to seeing how the two BC007 trials go. Also the rapamycin trail looks interesting.
Thank you 🙏 mine’s through burnout after many years of cumulative stress/trauma. I’m luckier than most though I feel
Also hanging onto the hope of pacing myself to a long term better baseline and maybe the new research will push me past that
Thanks for the update!
Millions of new cases diagnosable as ME/CFS
I love your videos!!! I’m glad you are back!
Thank you! Good to be back.
So good to see you!! Thank you for your dedication & persistence to share information & spread awareness! Your advocacy is so important & much appreciated ❤️
Welcome back! 😂I had to laugh(excuse me), you look absolutely thrilled with (i could be wrong)how they seem to try to sweep the "original" under any rug... Well,u put up a "damn" good fight! Your videos,great and straight to the point. My Thanks💞with "tired of being sick and tired"😂and aging and "ole Arthur'(arthritis)😮, it's a wrap! You
My man, get the "Award" for Best Video's on this(whatever name next)CFS. Uknow I believe was first mistake.It was so much more "devastating". My Thanks for sharing, I know it took a lot plus🙏bless you all.
I would be curious to see a study where very severe MECFS patients get the intensive chemo therapy that people with multiple myelomas get. My mom had this very severe and debilitating cough that started up randomly after getting covid. The cough wasnt because she couldnt breath or because her throat was itchy. She just went into insan coughing fits that actually caused her spine to fracture. After her immune system was essentially reset due to the bonr marrow being destroyed, she hasn't had that cough return.
I just found your channel. I sure hope for a cure. I have this on top of asperger's. I would take a walk in the woods and never come back if it wasn't for my pets. No one to take care of them. I get my moments of joy from them. We struggle to survive. I also use gratitude, meditation and breathing exercises. I have trouble with food. I mainly eat 3 things. I think a lot of all this is caused by chemicals in our food and things we are exposed to. I wonder if M.E. is more prominent in the US where big corporations own the FDA and allow chemicals that most countries forbid. I think so.
Hello, and thank you so much for the updates! With so much apathy from mainstream doctors, some hope goes a long way! What are your thoughts on the brain re-training 🧠 modality currently being proposed? Thanks 😊, and have a positive day!
Great to see you again!
Great to be back!
Thank you for this update! I'm so glad to see you still making videos! I've started making some of my own, and it is HARD WORK! Gentle hugs and restful wishes.
Great video
Thanks for your videos ! It really helps cause here in France it's very tough to find help and answers..
I have a question:
Do you know why exactly after a workout during the day, when we didn't really feel exhausted, we still have a night crash with insomnia?
It's really frustrating.
My ME is post viral, mono/glandular fever was number number 1 cause of ME/CFS so makes perfect sense LC is very similar to ME because it's from a virus - good news for us but horrendous it's at the expense of LC sufferers and yet the don't tell LC to rest, rest and more rest to hopefully recover.
❤
TMG BEATINE!!! MTHFR! FIX IT! Bring down your homocystine, I FOUND THE CURE!!
Thats awesome, but that only works for those with the MTHFR gene
Hi, what means tmg beatine? How we can fix genes? How bring down homocystine?
@@fight4me747 Not really, most people who suffer from CFS has some kind of methylation deficiency regardless if the gene. Most people eat like shit in america
google it @@missisipi9992
Sound low
Check the audio within the youtube app. Audio works fine on my end.
hi everyone I wanted to know if there's cfs forums so I can chat to like minded people who are going through the same things
The sound quality is terrible :(
That's strange, the audio is clear when I play it. Could it be your settings in RUclips or your device?
If you still struggle with hearing it try the closed captions, it's a message of hope & well worth hearing/reading. Hope you can hear it.