The symptoms morph. 27 years, the various symptoms have come and gone, I didn't start getting the vertigo until 2 years ago. The Drs were sure it was inner ear, it's not, its neurologic. The neuropathy has gone from the peripheral of my hands and feet up to my hips. I'm going to the neurologist on Wednesday. Time for an MRI. Stay well, I love this channel. Thank you.
I agree with you. The correct term is ME. It's the older term, the most specific term. The term cfs was deliberately coined to obfuscate and minimise. And it worked. I will include the cfs part for inclusion and googling purposes. But never capitalised. I always write it as ME/cfs.
I love your analogy referring to Alzheimers as "Chronic Forgetfulness Syndrome". Yes, the name we use is so problematic! ME doesn't even cover it and who can understand what it means!
Calling it CFS is so belittling and invalidating. This is a serious illness. I've had it about 40 years. Been through all kinds of healing modalities. I am basically bed bound. In severe pain and feel like I am actually dying at times. No regular Dr gets it at all. Thanks for this video.
@@PlayingDownUnder really, you get it? I'm not alone? SORRY you get that Ill.I hope you don't mind but what kind of symptoms do you have? Take good care of yourself!
@@kavitadeva Yes. I do. I've had this crap for 20 odd years. I'm starting to get to the point where I can deal with things. But back in the day it was horrible! I still have these symptoms, but it's just not as extreme. I had the worst stomach pain with extreme temperatures. Fibromyalgia. Insomnia. Extreme anxiety. Extreme depression.
Yes!!!! Explained soooo well!! 👍👍👍 Like you say, fatigue is a tiny part of it and that gets ignored because the focus is on fatigue. I’ve had M.E since 2006, the first five years I was bedridden. Today, I can only leave the house in my super duper, reclining power wheelchair that costs me £250 per month of my PIP to lease. I recently had to get a ‘statement of fact’ letter from my doctor for housing, it read…”…. has CFS (previously referred to as M.E).” I refused to accept it and got it changed. It is really important because in that one line, they are trying to do away with the proper diagnosis AND indicating that it wasn’t real in the first place (‘referred to’!!). I said to the receptionist, it would be like someone saying CFS (previously referred to as cancer)!!! It just wouldn’t happen! I do totally agree with why your headings include CFS though, to make sure that the people who need help are getting it! Anyhooooo… on we go!! 💗
Great job explaining this! ❤ Those of us who’ve had these chronic illnesses for a long time tend to forget just how confusing all this can be when you are first figuring it all out. I am having a bad brain fog day and was still able to completely understand what you were getting at. Superb job! 👍🏿 I’ve been thinking of doing a video on the difference between ME and CFS too, but I was completely unable to get the words out in a way that made sense. I guess I don’t have to, cuz you nailed it! 😊 keep up the good work!
Great video 100% agree with ALL you said,& YES being fatigued chronically,is only ONE Symptom of M.E.Many thanks Johnny😊.❤All the best to ALL who are suffering no matter what your Dr.calls it❤😊
Hello!!! Very good video!!! My journey started with my getting a tetanus shot that I really didn't want. A week after the shot, I ended up in the emergency room about as tired as I could be...no one knew what to do with me, so all that the staff did was to release me back home. That was the start of my having CFS. A year later I was misdiagnosed with Hep B and had more shots that I didn't want. My CFS worsened. Later that year I had a bought of vertigo and was misdiagnosed again with Meniere's Disease. At the doctor's office the Doctor said in. Loud voice:. "No salt"!! So I spent a long time avoiding salt not knowing that my electrolytes were way off. I was also mis- diagnosed with Sjogren's Syndrome. No my mouth and eyes were not dry at all!!! None of these doctors could figure out what I had. On May 14, 2021 around 1:15 in the afternoon I received my second Moderna vaccine. This gave me Myalgic Encephalomyolitis. I do believe what Dr. Myhill teaches is that some people can have the CFS and not the brain inflammation. This is what initially happened to me. In order of appearance, my story is CFS first and then the ME second. I spent the entire summer of 2021 bedbound. I started doing my own research and basically diagnosed myself through reading and studying to the best of my knowledge Dr. Myhill 's book and Dr. Teitelbaum 's book. I eventually went to a neurologist who confirmed my diagnosis of my health. I did have a series of MRI's. He saw improvement in my brain after 6 months and after 12 months. I have improved, according to Dr. Myhill 's book to about 70 to 80 percent improved. The best book that I continue to read is my Bible....a Book of Promises from God. Yes, when God says He can heal you , He will according to His Time, His Will and His purposes. Thank you for your channel and keep up the good work and your encouragement, John!!! Miss Monique 🙂🌷🙏💗
A rheumatologist said I have CFS and Fibromyalgia. Another Dr told that CFS is now considered Fibromyalgia. Why oh why…. My PC ghosted me and said to exercise…. And no doctor ever mentioned PEM, even after 10 years of me telling all of them the exact symptoms of it. BUT I now realize that all of us who have these symptoms, syndromes, etc., have experienced these frustrating scenarios with their own physicians. ❤
People who solely have clinical depression can get diagnosed with chronic fatigue syndrome. Then they did clinical trials using those patients as ME patients in the trials. That's how they came up with exercise as a treatment for ME, and doctors caused permanent damage to thousands of ME patients.
Speaking from my personal experience, if I say that I have ME, people don't know what I am talking about. Therefore I go on to explain that it's also called CFS - Chronic Fatigue Syndrome which is a name that more people have heard about. I also explain that the latter name is not really a great one since ME is so much more than just fatigue. So, until the term ME gets more well known I will probably have to explain it in the way I do. I don't mind though, and I'm not picky about people calling my illness by the "wrong" name - those who really know me know how my illness affects me and that's what matters to me. A name is just a name after all, knowing what it is, is the real game. I figure that as long as I use the term ME myself, people will slowly grow used to it.
you can have Fibromyalgia and have 'chronic fatigue' - i'm using both as you do; but really would prefer to be able to say ME - actually pronounce the thing - my brain fog is horrible so i can't find the word for plate sometimes never mind pronounce it. ! Thankyou for being here with these videos And not that long ago I know what you mean about what you find or don't - it was believed to be Epstien Barr, or an extension of Lime Disease
UK first used the name ME and USA called it CFS but they are the very same thing here in the UK. The UK adopted CFS because ME was known as the Yuppy Flu in the 80's because high flyers/business people had it ( Type A personalities). They did try to rename it can't remember what) to give it more gravitas but it never took off sadly. ME in UK just means being tired.
Excellent list, but you left out a couple of biggies - grief over the loss of your old life, now gone essentially forever, and depression. Both produce severe and debilitating effects which are further de-energizing and add to a diminished QoL (quality of life).
In a symposium panel, the five doctors and scientists agreed that ME/CFS was a terrible name and didn't do their work and the patients' experience justice. The scientists and docs are as frustrated with the name as we are. It minimizes the intensity of the experience. We have to use the phrase so we have a common language until we get a unique name or the unique and varied cluster of symptoms.
The symptoms morph. 27 years, the various symptoms have come and gone, I didn't start getting the vertigo until 2 years ago. The Drs were sure it was inner ear, it's not, its neurologic. The neuropathy has gone from the peripheral of my hands and feet up to my hips. I'm going to the neurologist on Wednesday. Time for an MRI. Stay well, I love this channel. Thank you.
I agree with you. The correct term is ME. It's the older term, the most specific term. The term cfs was deliberately coined to obfuscate and minimise. And it worked.
I will include the cfs part for inclusion and googling purposes. But never capitalised. I always write it as ME/cfs.
I like the lower case cfs. I'm going to start doing that too.
I love your analogy referring to Alzheimers as "Chronic Forgetfulness Syndrome". Yes, the name we use is so problematic! ME doesn't even cover it and who can understand what it means!
Yes. Fauci and his minions used the term CFS to sweep ME under the rug so they could spend research monies elsewhere.
Read the book Oslar's Web.
Calling it CFS is so belittling and invalidating. This is a serious illness. I've had it about 40 years. Been through all kinds of healing modalities. I am basically bed bound. In severe pain and feel like I am actually dying at times. No regular Dr gets it at all. Thanks for this video.
Agreed!
I sooo get that! Feeling like you are dying...
@@PlayingDownUnder really, you get it? I'm not alone? SORRY you get that Ill.I hope you don't mind but what kind of symptoms do you have?
Take good care of yourself!
@@kavitadeva Yes. I do. I've had this crap for 20 odd years. I'm starting to get to the point where I can deal with things. But back in the day it was horrible! I still have these symptoms, but it's just not as extreme. I had the worst stomach pain with extreme temperatures. Fibromyalgia. Insomnia. Extreme anxiety. Extreme depression.
@@PlayingDownUnder thanks for sharing. I have most of yours but no stomach issues. Be well.
Yes!!!! Explained soooo well!! 👍👍👍
Like you say, fatigue is a tiny part of it and that gets ignored because the focus is on fatigue.
I’ve had M.E since 2006, the first five years I was bedridden. Today, I can only leave the house in my super duper, reclining power wheelchair that costs me £250 per month of my PIP to lease.
I recently had to get a ‘statement of fact’ letter from my doctor for housing, it read…”…. has CFS (previously referred to as M.E).” I refused to accept it and got it changed. It is really important because in that one line, they are trying to do away with the proper diagnosis AND indicating that it wasn’t real in the first place (‘referred to’!!). I said to the receptionist, it would be like someone saying CFS (previously referred to as cancer)!!! It just wouldn’t happen!
I do totally agree with why your headings include CFS though, to make sure that the people who need help are getting it!
Anyhooooo… on we go!! 💗
Great job explaining this! ❤
Those of us who’ve had these chronic illnesses for a long time tend to forget just how confusing all this can be when you are first figuring it all out.
I am having a bad brain fog day and was still able to completely understand what you were getting at. Superb job! 👍🏿
I’ve been thinking of doing a video on the difference between ME and CFS too, but I was completely unable to get the words out in a way that made sense.
I guess I don’t have to, cuz you nailed it! 😊 keep up the good work!
Great video 100% agree with ALL you said,& YES being fatigued chronically,is only ONE Symptom of M.E.Many thanks Johnny😊.❤All the best to ALL who are suffering no matter what your Dr.calls it❤😊
Hello!!! Very good video!!!
My journey started with my getting a tetanus shot that I really didn't want. A week after the shot, I ended up in the emergency room about as tired as I could be...no one knew what to do with me, so all that the staff did was to release me back home. That was the start of my having CFS.
A year later I was misdiagnosed with Hep B and had more shots that I didn't want. My CFS worsened.
Later that year I had a bought of vertigo and was misdiagnosed again with Meniere's Disease. At the doctor's office the Doctor said in. Loud voice:. "No salt"!!
So I spent a long time avoiding salt not knowing that my electrolytes were way off. I was also mis- diagnosed with Sjogren's Syndrome.
No my mouth and eyes were not dry at all!!!
None of these doctors could figure out what I had.
On May 14, 2021 around 1:15 in the afternoon I received my second Moderna vaccine. This gave me Myalgic Encephalomyolitis.
I do believe what Dr. Myhill teaches is that some people can have the CFS and not the brain inflammation.
This is what initially happened to me.
In order of appearance, my story is CFS first and then the ME second.
I spent the entire summer of 2021 bedbound.
I started doing my own research and basically diagnosed myself through reading and studying to the best of my knowledge Dr. Myhill 's book and Dr. Teitelbaum 's book.
I eventually went to a neurologist who confirmed my diagnosis of my health. I did have a series of MRI's. He saw improvement in my brain after 6 months and after 12 months.
I have improved, according to Dr. Myhill 's book to about 70 to 80 percent improved.
The best book that I continue to read is my Bible....a Book of Promises from God. Yes, when God says He can heal you , He will according to His Time, His Will and His purposes.
Thank you for your channel and keep up the good work and your encouragement, John!!!
Miss Monique 🙂🌷🙏💗
I continuely use the word M.E if asked...
Thank you so much for your videos. They are super helpful 🩷
Well put.
Thank you very much for this video 🙏🏽 I literally asked the question today and found this video now
A rheumatologist said I have CFS and Fibromyalgia. Another Dr told that CFS is now considered Fibromyalgia. Why oh why…. My PC ghosted me and said to exercise…. And no doctor ever mentioned PEM, even after 10 years of me telling all of them the exact symptoms of it. BUT I now realize that all of us who have these symptoms, syndromes, etc., have experienced these frustrating scenarios with their own physicians. ❤
My diagnosis was CFS overlapping Fibromyalgia but I absolutely agree with using ME instead of CFS...
Do you have muscle pain in certain places everyday though me causes muscle pain which is what
@tomsale5142 yes I get pain everyday... particularly worse in the mornings, but the fatigue has been awful last few days..
People who solely have clinical depression can get diagnosed with chronic fatigue syndrome. Then they did clinical trials using those patients as ME patients in the trials. That's how they came up with exercise as a treatment for ME, and doctors caused permanent damage to thousands of ME patients.
Speaking from my personal experience, if I say that I have ME, people don't know what I am talking about. Therefore I go on to explain that it's also called CFS - Chronic Fatigue Syndrome which is a name that more people have heard about. I also explain that the latter name is not really a great one since ME is so much more than just fatigue. So, until the term ME gets more well known I will probably have to explain it in the way I do. I don't mind though, and I'm not picky about people calling my illness by the "wrong" name - those who really know me know how my illness affects me and that's what matters to me. A name is just a name after all, knowing what it is, is the real game. I figure that as long as I use the term ME myself, people will slowly grow used to it.
Love your channel thanks
you can have Fibromyalgia and have 'chronic fatigue' - i'm using both as you do; but really would prefer to be able to say ME - actually pronounce the thing - my brain fog is horrible so i can't find the word for plate sometimes never mind pronounce it. ! Thankyou for being here with these videos And not that long ago I know what you mean about what you find or don't - it was believed to be Epstien Barr, or an extension of Lime Disease
UK first used the name ME and USA called it CFS but they are the very same thing here in the UK. The UK adopted CFS because ME was known as the Yuppy Flu in the 80's because high flyers/business people had it ( Type A personalities). They did try to rename it can't remember what) to give it more gravitas but it never took off sadly. ME in UK just means being tired.
Excellent list, but you left out a couple of biggies - grief over the loss of your old life, now gone essentially forever, and depression. Both produce severe and debilitating effects which are further de-energizing and add to a diminished QoL (quality of life).
In a symposium panel, the five doctors and scientists agreed that ME/CFS was a terrible name and didn't do their work and the patients' experience justice. The scientists and docs are as frustrated with the name as we are. It minimizes the intensity of the experience. We have to use the phrase so we have a common language until we get a unique name or the unique and varied cluster of symptoms.
The WHO had the term ME clearly defined decades ago. CFS was deliberately made up to sweep ME under the rug.
❤❤❤
Neither are a diagnosis. Dr Sarah Myhill repeats that so we gey it. "It's not a diagnosis, it's a clinical picture".
I call it “ Covid crap”
I don't use CFS or ME. I just say I'm tired. LOL.