Thank you so much for this latest information,had the illness for 29 years,if non believer's doctors etc had this even for a few days they would change their minds GUARANTEED, they would wonder how people endure this illness for years, take care all sufferers, Alan UK
No matter how many times I explain ME to my sister, she continues make snide comments on my problem is I am lazy. Before I got ME CHF in 1995, I didn’t have a lazy bone to my body. I worked 10 hours a day at my full time job, took care of a toddler and an angry teenager, cooked , did laundry, cleaned the house, made the lion share of the income, and involved with a lousy marriage. During this mess, I got a horrible virus. I was sick for 2 weeks with high fevers. When I made it through that, ME CFS was on me like tiger. It’s been downhill ever since.
Stress weakens the immune system which opens the door for these horrible autoimmune diseases (I believe ME/CSF is autoimmune because the symptoms are so similar in a lot of them).
Sweetie there is a common denominator to this, if your sister is not included in this equation then she is the complete opposite of you, which makes her? 😊
23 years here. I don't even bother trying to get help for it anymore. I just try to be happy day by day. Not a good thing. Glad I have a dog and cat because there is not one human I know who cares. They think I am crazy.
@@traceytrotter9934same💔 I honestly can't imagine ever connecting with another human again after so much doubt and neglect, I can't imagine anyone truly caring after so many yeats of this.😮💨
I wish the blood test was available everywhere. I was diagnosed with lyme disease years ago and had a positive lyme test. I carry that positive test to every new doctor I see. Lyme and chronic lyme is also not believed. My ME/CFS symptoms started with a late diagnosis lyme test. I had 5 years of antibiotics and I never got better. I was then diagnosed with ME/CFS. We need testing that can be put on paper for proof. That is the only way we will be believed.
Thanks for this. You are such a bright light in our community. I've been sick for 7 years. Diagnosed in 2021. Went from mild to moderate to severe and back to moderate. Was mostly bedbound the past 2 years but dietary changes (not supplements) made a huge difference and now I'm at about 60-65% capacity on good days. It's a game of chutes and ladders. During my diagnostic process I had an MRI to rule out MS. I had that white matter brain change in the frontal cortex. The clinicians of course didn't know that's an ME biomarker. They recorded it as possible signs of aging (73). And so it goes. Thanks for raising awareness ❤
Please take the time to create a playlist on his videos. Having suffered this since 1988, through so many labels and research I have found his to be the most informative and correctly descriptive.My sincere thanks and may you be blessed for your time and efforts getting this out,while sacrificing and sharing your knowledge on this.I know it took a lot, being one coming from no informative literature to going through many symptoms/meds,a total of 34yrs.to being housebound and now bedbound.The most difficult part was knowing the people who knew you the best,became the biggest non-believers. That's how complex this can become. At this point,I really don't care about them.My Sincerest Thanks.🙏💞
Yes, both Dr. Sarah Myhill and Dr. Ron Davis have come up with blood tests to measure ATP in the blood. Dr. Myhills test is not available in the US but I do believe that Dr. Davis' test is available in a few states. I live in Rhode Island and the doctors and nurses that I have talked with don't even know about MECFS.!!!!!! Keep up the great work, John... What you are doing is extremely valuable. With love and blessings to you and your family 🌹. Miss Monique 🙂🙏🌷💗
Thank you for what you are doing for us any help is needed some people are in bad shape iam mostly bed bound i do very little anymore i worked for 48 years and now this crap something has to be done soon keep us informed on new info and what help we are going to get real help no B S step. Up funding people are. Really bad fatigue is the worst of it all we need help thanks
Thank you, THANK YOU, for this well researched information and for your efforts to inform and uplift our community!! I've been a 45-year survivor of this horror known as ME/CFS, and I appreciate so very much these timely updates! Keep up the good work! Gentle hugs 🫂 and have an endurable day!
THANK YOU so much for this! It was exactly what I needed on a day when I’m deep in grieving my old life and very much feeling the burden of being one of the million missing. It takes an astonishing average of 15-17 years for medical knowledge to get translated into practice. Thanks for helping to reduce that (unacceptable) delay and providing easy to understand, timely content.
I totally understand the grief. 😢 But I try to center myself in the here and now (mindfulness) and count the blessings I do have, no matter how small. 🙏🧘♀️
Especially as an ME patient, I wish I wasn't surrounded by narcissists but I am. 🎶No amount of evidence will ever convince a narcissist🎶 (Con. Music Guru)
Hi, I'm not sure if it's something you've already done or looked into but, a video on the connected/ comorbid illnesses/ conditions would be really helpful. Things such as hypermobility, hEDS, neurodivirgence (ASD, ADHD and others) etc. progress with identifying markers is amazing (^_^) thank you! 💙💙💙💙
25% bed bound is terrifying and that's why we need to pace and remain Zen-like so we don't end up so severely ill and count our blessings (I'm moderate with a miniscule life that I love & appreciate daily). Thank you for all the videos you do as I know it'll cost you ❤❤❤
Over 25 years of this crap. It makes me so angry when I recall being sent to a shrink and placed on Zoloft about 18 years ago. Also, with fibromyalgia (which often accompanies CFS) 40% of us actually have small fiber peripheral neuropathy diagnosed with skin biopsy. We have to work twice as hard to complete routine tasks. I ran marathons and played on a tennis league before mine hit.
I was dx w/ms in 2019 by Mri. (white matter). But honestly this has soo many similarities to ME!! I have all symptoms as well. I can barely sleep at all even with help of meds. I'm always hindered by what docs call "your anxiety". I don't even feel anxious or depressed. I'm just beyond Exhausted and can barely function, and summers the worst of all for me. My life sucks :/
Thank you for this video! 28 years and counting sick from ME/CFS. I was bedridden before I moved out of my moldy house. Now I am semi functional. I can take care of myself do light chores but can't work, socialize, engage in hobbies. In addition to mold avoidance I restrict calories and don't eat gluten which seems to help. Leaky gut sounds like a very likely hypothesis with my illness cause I am wacked out after meals. As I get closer and closer to mealtime my symptoms abate more and more. I also try to force myself to stay active during the day with the hope I will get 5 maybe six hours of unbroken sleep at night. I never believed diagnosing this illness was out of reach of CDC and NIH 28 years ago and I certainly don't believe that is the case today. They just don't want to loose face, get sued, face themselves in the mirror so they are going to perpetuate it as long as they can.
Former scientific researcher and ME/CFS and fibromyalgia sufferer here. If a study describing diagnostic markers is 4-5 years old and its data has not been built upon in that time, it suggests that the original data was not useful in determining those diagnostic markers. If I was researching in that area, I would read the study and compare it to my own and other work. I would then formulate a hypothesis and test it. So, say the first study said markers A, B, C and D were elevated. I know from my own (unpublished) work that markers A, C and D are elevated in other conditions and may be general markers that there is something wrong in the body. The original study isn't wrong, its conclusion was too general. So, I work on marker B and it may show alteration from control, but once I expand my test population (different country, gender, ages, ethnicity, etc), I may find that marker B isn't a unreliable diagnostic marker. I may publish, I may not, depending on what other information I need to gather. TL;DR... If there have not been confirmative and/or expansive studies on a paper from 2015, especially from the original authors, the information may not have been as useful as originally presented. Having said that, I believe that ME/CFS is a real disease with a physical cause. And I believe that ME/CFS and fibromyalgia may be multiple different diseases, which account for the broad spectrum of symptoms and outcomes in patients. And that makes it difficult to study. Imagine thinking that flu, Strep, thyroid cancer, strained neck ligaments and C4 herniation are all the same disease because they cause neck pain. Now try and come up with a physical diagnostic marker that covers all these diseases.
Great Research video.Many thanks Johnny for all your ongoing Research & efforts to help us & our families deal with this devastating Disease.Always watch your videos,invaluable😊Hope you are getting over the worst of your dreadful flare😊
Thank u for ur continued research & latest info u post up for us all with me/cfs johnny although u have not been too well urself the past few months..ur a true warrior/advocate for sufferes of this dreaded disease..take care mate 👍
You guys are so far ahead of the UK, we're in the dark ages! We have almost no services for the condition and, those which exist come under the heading of mental health.
Lol no😂 18 years of this hell and let me tell you, help in the UK is non existent! The nhs has been broken for decades anyway but with regards to M.E, they just gaslight and downplay your reality.
One of my first symptoms was feeling an exhaustion I’ve never felt before, and walking from one room to another was too hard. I felt a heaviness, like I needed to sink to the ground, no longer able to move, like I’d just have to lie down right there. No energy, pain feeling like joints and every nerve fiber in my body. If I have a good day, I overdo it and end up in bed later and for all night and all day after, even a whole week! Thank you ❤👍🏽
Hey Johnny! Just happened to catch one of your talks. Fibromyalgia could be used in place of ME in your description and the meaning would be the same! How I wish you and I were not experts in this disease we must live with, but we both are doing the very best we can! I am so so proud of you for teaching others about this! Keep on sharing your excellent information because it’s helping so many, including me! I love you and I love your mom! Give her a hug from me please!
My father recovered or went in remmision now lost my mum its come in him around 40 percent but not as bed bound at 40 as he his 74 now all my aunties have fybromyalgia to
There’s a studie I saw a few years ago showing more -was it lactate- among other things in the brain and indicated/indicators of inflammation and raised temperature in the brain. Also saw a Norwegian study about the energy production about fat and carbs and ME/CFS, that doesn’t work effectively then. There were different sub groups, for some with this disease (why call it a syndrome?) it works better with carbs, for others fat, for the third group same, but for all groups literally much less effective energy production.
10 years and I still don’t have a proper diagnosis. They gave me a fibro diagnosis years ago then no doctor wanted anything to do with me. Only advice I got was consistently “exercise” they promised it would cure me so I did it. It only made me worse. Now I have very clear PEM and see that my symptoms before were also PEM related too. My doctor says I am crashing because I eat too many carbohydrates (I didn’t say anything about my diet, she just assumed because I’m overweight) huh didn’t know eating carbs could leave you bed bound for a week?
Thank you so much for this latest information,had the illness for 29 years,if non believer's doctors etc had this even for a few days they would change their minds GUARANTEED, they would wonder how people endure this illness for years, take care all sufferers, Alan UK
Lol, my X used tell me , "Why cant you just ACT NORMAL?!" 🤣😂🥲... 🥺
@@sarahhood4423sigh, I have this from the one remaining family member in my life ( my dad) horrible to hear 😮💨
No matter how many times I explain ME to my sister, she continues make snide comments on my problem is I am lazy.
Before I got ME CHF in 1995, I didn’t have a lazy bone to my body. I worked 10 hours a day at my full time job, took care of a toddler and an angry teenager, cooked , did laundry, cleaned the house, made the lion share of the income, and involved with a lousy marriage. During this mess, I got a horrible virus. I was sick for 2 weeks with high fevers. When I made it through that, ME CFS was on me like tiger. It’s been downhill ever since.
Stress weakens the immune system which opens the door for these horrible autoimmune diseases (I believe ME/CSF is autoimmune because the symptoms are so similar in a lot of them).
Sweetie there is a common denominator to this, if your sister is not included in this equation then she is the complete opposite of you, which makes her? 😊
@@donnahall104 😀
The amount and variety of symptoms is astounding. 28 years.
I feel for the children whose parents don't have any medical background and look upon this as if it doesn't exist. 🙏
23 years here. I don't even bother trying to get help for it anymore. I just try to be happy day by day. Not a good thing. Glad I have a dog and cat because there is not one human I know who cares. They think I am crazy.
@@traceytrotter9934same💔 I honestly can't imagine ever connecting with another human again after so much doubt and neglect, I can't imagine anyone truly caring after so many yeats of this.😮💨
I wish the blood test was available everywhere. I was diagnosed with lyme disease years ago and had a positive lyme test. I carry that positive test to every new doctor I see. Lyme and chronic lyme is also not believed. My ME/CFS symptoms started with a late diagnosis lyme test. I had 5 years of antibiotics and I never got better. I was then diagnosed with ME/CFS. We need testing that can be put on paper for proof. That is the only way we will be believed.
Thanks for this. You are such a bright light in our community. I've been sick for 7 years. Diagnosed in 2021. Went from mild to moderate to severe and back to moderate. Was mostly bedbound the past 2 years but dietary changes (not supplements) made a huge difference and now I'm at about 60-65% capacity on good days. It's a game of chutes and ladders. During my diagnostic process I had an MRI to rule out MS. I had that white matter brain change in the frontal cortex. The clinicians of course didn't know that's an ME biomarker. They recorded it as possible signs of aging (73). And so it goes. Thanks for raising awareness ❤
i got this after coming off life support 2018, i still have it, the NHS in the uk are gaslighting health conditions.
Doctors think I'm nuts . Make me so angry 😡
Well, I think your Doctors are nuts! haha Hope you find a good Doc
@@fight4me747
Please take the time to create a playlist on his videos. Having suffered this since 1988, through so many labels and research I have found his to be the most informative and correctly descriptive.My sincere thanks and may you be blessed for your time and efforts getting this out,while sacrificing and sharing your knowledge on this.I know it took a lot, being one coming from no informative literature to going through many symptoms/meds,a total of 34yrs.to being housebound and now bedbound.The most difficult part was knowing the people who knew you the best,became the biggest non-believers. That's how complex this can become. At this point,I really don't care about them.My Sincerest Thanks.🙏💞
Hey there! I have a few playlists already set up. Hope you enjoy them.
Great video! Thank you so much. ❤ Hit me right in the feels at the end as I actually had to give up my engineering career.
Yes, both Dr. Sarah Myhill and Dr. Ron Davis have come up with blood tests to measure ATP in the blood. Dr. Myhills test is not available in the US but I do believe that Dr. Davis' test is available in a few states. I live in Rhode Island and the doctors and nurses that I have talked with don't even know about MECFS.!!!!!!
Keep up the great work, John...
What you are doing is extremely valuable.
With love and blessings to you and your family 🌹.
Miss Monique 🙂🙏🌷💗
Thank you for all your videos and information. I am newly diagnosed and truly appreciate all you've shared.
Thank you for all you do for the ME/CFS community! ❤
It's my pleasure
Thank you for what you are doing for us any help is needed some people are in bad shape iam mostly bed bound i do very little anymore i worked for 48 years and now this crap something has to be done soon keep us informed on new info and what help we are going to get real help no B S step. Up funding people are. Really bad fatigue is the worst of it all we need help thanks
Thank you, THANK YOU, for this well researched information and for your efforts to inform and uplift our community!! I've been a 45-year survivor of this horror known as ME/CFS, and I appreciate so very much these timely updates! Keep up the good work! Gentle hugs 🫂 and have an endurable day!
Thanks for watching!
THANK YOU so much for this! It was exactly what I needed on a day when I’m deep in grieving my old life and very much feeling the burden of being one of the million missing.
It takes an astonishing average of 15-17 years for medical knowledge to get translated into practice. Thanks for helping to reduce that (unacceptable) delay and providing easy to understand, timely content.
I totally understand the grief. 😢 But I try to center myself in the here and now (mindfulness) and count the blessings I do have, no matter how small. 🙏🧘♀️
The vast majority of these tests aren't clinically available to patients. Hopefully they will be some day
The CPET also has risks if you have ME/CFS
Especially as an ME patient, I wish I wasn't surrounded by narcissists but I am.
🎶No amount of evidence will ever convince a narcissist🎶 (Con. Music Guru)
Hi, I'm not sure if it's something you've already done or looked into but, a video on the connected/ comorbid illnesses/ conditions would be really helpful.
Things such as hypermobility, hEDS, neurodivirgence (ASD, ADHD and others) etc.
progress with identifying markers is amazing (^_^) thank you! 💙💙💙💙
25% bed bound is terrifying and that's why we need to pace and remain Zen-like so we don't end up so severely ill and count our blessings (I'm moderate with a miniscule life that I love & appreciate daily). Thank you for all the videos you do as I know it'll cost you ❤❤❤
Thank you for all of your hard work! I've had ME since I was 3 yrs old, so that's 56 fun-filled years. I win!??? 😬🤕😵😭🤬
oh man, thats rough.
@@fight4me747 Thanks, barely hangin' on.
Over 25 years of this crap. It makes me so angry when I recall being sent to a shrink and placed on Zoloft about 18 years ago. Also, with fibromyalgia (which often accompanies CFS) 40% of us actually have small fiber peripheral neuropathy diagnosed with skin biopsy. We have to work twice as hard to complete routine tasks. I ran marathons and played on a tennis league before mine hit.
Do you have hypomobility heds highly linked
I was dx w/ms in 2019 by Mri. (white matter). But honestly this has soo many similarities to ME!! I have all symptoms as well. I can barely sleep at all even with help of meds. I'm always hindered by what docs call "your anxiety". I don't even feel anxious or depressed. I'm just beyond Exhausted and can barely function, and summers the worst of all for me. My life sucks :/
This video is much needed and came at a great time. Thank you so much for making these videos I really appreciate it.
Great video! Thanks for your contribution 🤍
Thank you for this video! 28 years and counting sick from ME/CFS. I was bedridden before I moved out of my moldy house. Now I am semi functional. I can take care of myself do light chores but can't work, socialize, engage in hobbies. In addition to mold avoidance I restrict calories and don't eat gluten which seems to help. Leaky gut sounds like a very likely hypothesis with my illness cause I am wacked out after meals. As I get closer and closer to mealtime my symptoms abate more and more. I also try to force myself to stay active during the day with the hope I will get 5 maybe six hours of unbroken sleep at night. I never believed diagnosing this illness was out of reach of CDC and NIH 28 years ago and I certainly don't believe that is the case today. They just don't want to loose face, get sued, face themselves in the mirror so they are going to perpetuate it as long as they can.
Thank you and so nice seeing you!
Thank you so very much!
Former scientific researcher and ME/CFS and fibromyalgia sufferer here. If a study describing diagnostic markers is 4-5 years old and its data has not been built upon in that time, it suggests that the original data was not useful in determining those diagnostic markers. If I was researching in that area, I would read the study and compare it to my own and other work. I would then formulate a hypothesis and test it. So, say the first study said markers A, B, C and D were elevated. I know from my own (unpublished) work that markers A, C and D are elevated in other conditions and may be general markers that there is something wrong in the body. The original study isn't wrong, its conclusion was too general. So, I work on marker B and it may show alteration from control, but once I expand my test population (different country, gender, ages, ethnicity, etc), I may find that marker B isn't a unreliable diagnostic marker. I may publish, I may not, depending on what other information I need to gather. TL;DR... If there have not been confirmative and/or expansive studies on a paper from 2015, especially from the original authors, the information may not have been as useful as originally presented. Having said that, I believe that ME/CFS is a real disease with a physical cause. And I believe that ME/CFS and fibromyalgia may be multiple different diseases, which account for the broad spectrum of symptoms and outcomes in patients. And that makes it difficult to study. Imagine thinking that flu, Strep, thyroid cancer, strained neck ligaments and C4 herniation are all the same disease because they cause neck pain. Now try and come up with a physical diagnostic marker that covers all these diseases.
Another informative video, Thank you for putting them out there
Great Research video.Many thanks Johnny for all your ongoing Research & efforts to help us & our families deal with this devastating Disease.Always watch your videos,invaluable😊Hope you are getting over the worst of your dreadful flare😊
Such helpful information thank you!!!
Thank u for ur continued research & latest info u post up for us all with me/cfs johnny although u have not been too well urself the past few months..ur a true warrior/advocate for sufferes of this dreaded disease..take care mate 👍
Thank you, I really appreciate that
@fight4me747 Thank u Johnny keep doing much needed important work..stay well mate👍
I've had ME/CFS since I was 15- I'm now 52 & it's only getting worse Thanks for your videos on this topic!!
Had is awful disease for 40 yrs 😢 Not fun ..
You guys are so far ahead of the UK, we're in the dark ages! We have almost no services for the condition and, those which exist come under the heading of mental health.
There's a CFS centre London but it's getting in and travelling
Lol no😂 18 years of this hell and let me tell you, help in the UK is non existent! The nhs has been broken for decades anyway but with regards to M.E, they just gaslight and downplay your reality.
❤️❤️❤️
One of my first symptoms was feeling an exhaustion I’ve never felt before, and walking from one room to another was too hard. I felt a heaviness, like I needed to sink to the ground, no longer able to move, like I’d just have to lie down right there. No energy, pain feeling like joints and every nerve fiber in my body. If I have a good day, I overdo it and end up in bed later and for all night and all day after, even a whole week! Thank you ❤👍🏽
I can so relate!
Hey Johnny! Just happened to catch one of your talks. Fibromyalgia could be used in place of ME in your description and the meaning would be the same! How I wish you and I were not experts in this disease we must live with, but we both are doing the very best we can! I am so so proud of you for teaching others about this! Keep on sharing your excellent information because it’s helping so many, including me! I love you and I love your mom! Give her a hug from me please!
So great to hear from you! My Bday buddy!
❤❤
My father recovered or went in remmision now lost my mum its come in him around 40 percent but not as bed bound at 40 as he his 74 now all my aunties have fybromyalgia to
🥀Excellent video thank you🥀
There’s a studie I saw a few years ago showing more -was it lactate- among other things in the brain and indicated/indicators of inflammation and raised temperature in the brain.
Also saw a Norwegian study about the energy production about fat and carbs and ME/CFS, that doesn’t work effectively then. There were different sub groups, for some with this disease (why call it a syndrome?) it works better with carbs, for others fat, for the third group same, but for all groups literally much less effective energy production.
When I had CFS/ME I was lactose intolerant. I had to switch to lactaid products for all my dairy intake.
Post Exertional malaise
How do we no if its fybromyalgia addhd to me cfs or its muscle oain from.me even though i believe same thing
What's ME?
ruclips.net/video/qZiHj76LVE8/видео.html
10 years and I still don’t have a proper diagnosis. They gave me a fibro diagnosis years ago then no doctor wanted anything to do with me. Only advice I got was consistently “exercise” they promised it would cure me so I did it. It only made me worse. Now I have very clear PEM and see that my symptoms before were also PEM related too. My doctor says I am crashing because I eat too many carbohydrates (I didn’t say anything about my diet, she just assumed because I’m overweight) huh didn’t know eating carbs could leave you bed bound for a week?