It's severe inflammation in the brain/nervoussystem but doctors won't do anything to treat it. The fact that symptoms are so severe should make doctors worried about how the patient can manage, but instead they leave them without proper help and treatment to help lessen symptoms. I can't understand why anyone would doubt this disease when it's so common.
So true - even after 6 years of blogging, I still see this whole 'it's all in your head' thing - crazy stuff, the dysfunctions are so numerous and many can be confirmed by good testing, so their not all invisible.
With long covid exploding, ME/CFS can no longer be denied as a severe and disabling physical post-viral disease. The ignorance was much worse in 2008 especially in the UK when it was labelled as a mental illness, all UK ME research was psychological only, all UK books on it was psychological and patients who couldn't care for themselves was locked up in mental institutions. Just one man was responsible for this. Politics and ego allowed this man to do this. We the patients in the US got rid of 2 CDC directors for CFS due to incompetence in 2000 and 2012
Thank you for addressing this issue with ME/CFS as a woman who has this nobody seems to care enough to help you with alot of these crazy symptoms Thank you Dave 😊
Cant believe this has so few views. I've been looking for years , and this guy seems to have most credible information on CFS that I was able to find. Someone needs to make an "emotional montage" for CFS otherwise people won't share it :/
Thanks for your comment - indeed we need help to spread the word so this education reaches more people. Not sure what an 'emotional montage" is or how to create one - do you do this sort of thing?
@@CFSUnravelled1 An emotional montage would be something with sad images and video captures which takes people who experience this condition and talk about it how it feels and how much it aggravates their life all on a sad music background. You get the idea.
@@CFSUnravelled1 You got it 😅 they tend to get even more famous if there's moving pictures in them like in this one th-cam.com/video/rZdjbLFPr5k/w-d-xo.html for some reason people respond better to this type of montage, i tend to feel others pain when they talk about it. no need for such stuff, but I guess some need it. it's also validating for those who have been suffering of the conditions to see it, but it leaves a strong mark on those who had no clue that the disease was "so bad". I guess they thought it was all in our heads, huh ;) Anyway, you got it!
Thank you Dan, I Hope and Pray that any person newly diagnosed with ME/CFS finds this as with personal experience and fighting this weird illness for decades, I now know it can’t be fought. Your Post explains fully why it can’t be fought because to many core body and neurological systems are affected. The more we fight back, the more the illness gets rooted in and affects even more body and neurological systems. You have helped ME more than most to acknowledge the challenges that I face but you also offer hope that Recovery is possible 🙏
Thank you for this great video. Unfortunately someone who doesn't know anything about this illness would not understand how severe it can be. Our best chance to explain this illness to the world is to show them severely ill patients. My adult daughter is bedridden. She can not sit, I brush her teeth and feed her. It destroyed her life and had great impact to the lives of all our family members. I had to quit my job. It is not just her. Research has shown that ME/CFS is more disabling than Multiple Sclerosis, Congestive Heart Failure and most other chronic illnesses.
For sure, there is not enough awareness. I worked hard to create a video to spread awareness, but sadly it didn't take off! :( What do you think of it? th-cam.com/video/esml2z8gKFc/w-d-xo.html
Here are my thoughts: One can watch the video and still feel very comfortable. People are not afraid of brain fog, headache and fatigue. They are afraid of death, pain, being alone, forgotten, not being able to take care of themselves, their children, being poor, uneducated, loveless, not understood, being completely dependant of someone else. It is high time to take out our heavy guns, tell the truth and make them uncomfortable.
@@CFSUnravelled1 I think it would be better to show the video with real people and some 'action' in the video so that other people can directly relate as if it was them. I also think showing extremes would be good - then people would realize - this could also possibly happen to me. They would start to take an interest in this disease. We need hell lot more awareness. Nobody really knows this disease.
although it sometimes does not show up like that i have had it for well over ten years looking after my 2 young kids at the time they are now mini adults 16/19 years i have been like this and been working the same job and ended up with lupus the people i know i get worse if i am to attend a social event like a party, sunlight, UV triggers me over doing things makes it worse I've said it time and time again no one understands think I'm lazy or a pain for them because i am like this is not trying to make their life difficult my life as become difficult i won't be able to play with any grandkids if they have any later on i can just about get out for 10 minutes and im done in walking is hard talking to people is hard brain fog is difficult they even say it is my hearing which it is not it is chronic fatigue lupus me etc mine was not being able to absorb vitamin d
I was better for a long while, but after five years of feeling worse I am losing hope again. This has roller coastered for me, the vast majority sick, for nearly 27 years.
It can be rough to go through that rollercoaster - my lowest moment was actually during my recovery when I suddenly lost all faith that I had been progressing. Looking after yourself emotionally is really important to keep moving forward.
I’ve been diagnosed at 16, and still extremely sick at 18, but my parents still don’t understand or care, they just think I’m lazy and want to kick me out, refusing to help or even talk to me about my health.
So sorry to hear that. Unfortunately, that happens with a lot of young people. It's difficult for an outsider to understand what ME/CFS feels like. What you need to find is an advocate, a doctor that can understand. If he can do a test that shows some physical dysfunction, he/she will be able to convey to your parents that the illness is real!
If you was diagnosed how was it your parents don't believe the medical professionals who diagnosed it in the first place 🤔 they should've spoken to your pediatrician since you was a minor?.
What about severe muscle pains and weakness especially when not having a refreshing sleep, I then feel my world is collapsing...not even winning 10 million dollars will make me enthusiastic enough to leave bed
Muscle symptoms like weakness and long periods of getting back muscle strength is a core symptom of ME. You may not have it if your a mild but if your moderate or severe your muscles can rarely recover from small activity. All muscles are involved.
Super video to demonstrate the vast range of symptoms AND to explain our mysterious illness succinctly (8 minutes is great) to friends and family who find it even harder to understand, as they don't experience the symptoms. An essential complement to Jen Brea's film and in fact to all the filming of those who are suffering.
I have been trying for over 20 years to tell my doctors something isn't right with me. I have other medical problems, but now it has made these symptoms even worse. My mom had cfs when she was alive. It's horrible not to get the help I need.
Thanku so much. This is me! Ive seen 25 Drs of all sorts, countless $$ and everyone has told me they know what it is, do the $ tests and admit they were wrong. For 2yrs i slept long hrs, coming up unrefreshed, bleary & had no focus or thought processing. I went from being able to function in a highly stressful position to not being able to read a sentence! My muscles ached, i walk like im 80 not 48, after 2 yrs i felt more awake by 25% but still feel unwprthy to work. No welfare, as no diagnosis? Wish there were someone in Perth Australia that knew anything about a cure or betterment.
Thank you very much Dan. I will definitely share!! I am curious: How does you thinking/approach compare with Jennifer Brea's (Director of the movie "Unrest") and the group MEAction? As you probably know they are advocating for funding so that a cure can be found. Perhaps finding the cause, as you mention, is the first step to finding a cure. I think the danger in putting all one's eggs in this basket is a sense of hopelessness while a cure is sought and feeling like there is nothing one can do but wait. By the way, I fully agree with the concepts that you present in the CFS Unravelled online course. Thanks again Dan for all of your work.
I cannot speak about their efforts as I am not that familiar with them. However, from what I understand their view is still that the illness is a mystery (ie. the pathogenesis). So whilst I am all for research that translates into more effective treatments being delivered, I think that many such treatments already exist. The key is to refine them and make them more available and to have a united front on the overall direction on where we are going with all this - it seems we are a long way from that at this stage.
They don't even know what it is because it isn't taught at the universities. According to this survey in the UK (s. link below) 91.7% of doctors don't even know what CFS is and 70% think it's psychosomatic. The universities don't really have a clue either. th-cam.com/video/NjFKLFr8hqw/w-d-xo.html
I think I’m one of the lucky ones. I happened to see a neurologist because at about 40 I was sure I had early onset Alzheimer’s. He did some memory tests and said I didn’t. Then about a year later I saw him because of wide-spread pain. Again some tests (mostly to rule other things out) and taking my memory issues into consideration diagnosed Fibromyalgia. Then came the sleep issues - the slightest stress, or time change (I traveled a lot) and I couldn’t fall asleep and if I did I’d have interrupted sleep. This was all nearly 20 years ago and the pain is mostly if the weather is cold and wet so totally manageable - but the sleep issues? They’re horrid. I take a sleep cocktail of Gabapentin, Amitriptyline and Melatonin. It took longer to figure out what drugs, how much, and the combination than it did to get a diagnosis. I say I’m lucky because I’ve heard horror stories about the pain some suffer from. I don’t think at 57 there will be a cure in my lifetime but I can always hope.
Thank you for spreading the word about this disease and thank you for lessening the stigma that comes with it, that part in particular I think is very powerful. Though I have some concern with the way psychological disorders are presented here. Be careful to make sure people don't get an idea that psychological disorders are in any way not real, because they too have real symptoms and real affects.
Totally agree with you. The issue people with chronic fatigue syndrome face is that they are often accused of making the symptoms up or not really having all those symptoms (like it's all imagined). But you are right, we must stigmatise mental health issues in any way.
It would be good if some celebrities would have CFS - like Avril Lavigne - that would talk about it openly. Especially someone very famous - then everybody would know this condition quickly.
took me over 25 years of going to different DR'S with fatigue and sweating, i got diagnosed with sleep apnea in 2018, but not before i ended up on icu with respotory failure, i now have a sleep machine, but still cant function, after four lots of blood tests and the DR blaming my sleep machine, my sleep consultant finally wrote to him asking for the blood test results, i am low on vitamin d and also b12, that was some 4 months ago, and still feel like a wet mop. my muscles tighten up after doing light work and it takes me 4 days to get back to normal, if that's what you call it, their is a big lack of understanding from DR'S in the uk and in the end you tend to give up, but i also carry a burden from my family who thinks there is nothing wrong with me, and i should be in full time work, I WISH IT WAS THAT EASY, if you or anyone has any solutions feel free to comment, or any magic formulas.
That's it isn't it - there are no magic formulas that work for everyone, but recovery IS possible. The key is understanding how people recover and why it works for them, even if you have to do something slightly different. Yes, unfortunately that's the burden anyone with invisible illness shares - it's very frustrating.
i feel tired since i was 16 (in 2012 ) , everyone said i was lazy , these last three years terrible things happend to me , i got verry sick , and a year ago i started to see doctors but they all said i have nothing ! my blood tets are all good the MRI !! can you belive it they even recomended to see a psy doctor and he told me i m hypochondriac !! i'm so confused what is this illness that even worse than cancer ? there were sometimes where i couldn't moove , sleep or eat , i' m not going to school , i'm not even going out ! i'm so tired of my life , i want to die !!
Experience cfs ,me after covid infection 4 weeks after recovery impatience working out too many high intensity spinfits too soon after each other cuased. Ligh gentle cycling feels like iam in the bleep test pushed to level 17 brutal
Hello doc. I hope i can get a reply from you. I had a bacterial infection recently called h.pylori then i got through it by meds. Since then, I seem to have gotten IBS and what's getting me more anxious is that I am always tired now. I can't do things that i normally do at work.everytime i excert effort it will drain me. Even climbing through stairs will drain me. And I do feel like im going to be sick the next day after some physical work. I feel refreshed though when i rest for like 2 hours or take a nap. But what i am so worried about is will this developed gradually to much severe kind of cfs? I have this for 4 almost 5 months now. And still the same .What do you think doc.
It can but he doesn't have to. Dan is not a doctor. I'd recommend following the SIBOSOS facebook group for more info - lots of update on the newest IBS-research. Getting IBS and associated symptoms after taking antibx combo for H.Pylori is common (s. Dr. Sandberg-Lewis). Essentially it means your nervous autonomic system got overwhelmed either with toxins, infections, physical or emotional unprocessed trauma. Those imbalances add up in the nervous system that it is not able to do proper signalling to digestive, endocrine, immune, detox, reproductory and other systems in the body. Look up the vagus nerve. Vagus nerve enervates most of the organs in the body and perfectly orchestrates their functioning. IBS is primarily a 'dis-ease' of the central nervous system (at times caused by physical obstructions in the intestines) - still it is being treated mostly 'mechanically' with killing off and probiotics and low-fodmap diet. The whole picture of this condition in the medical profession has to be seen yet but we're making progress!
If you experience further assaults to your body (s. causes for CNS-dysfuction above) then it can develop into a more advanced CFS. If you start with treatments available, the condition can get better and often does.
Well, it varies between countries. However, I am uncertain what benefit you will gain out of an additional diagnosis!? (unless you have new uninvestigated symptoms - these should always be reported to your doctor) The two conditions are really just one - same root mechanism, just slight difference in expression of symptoms. My advice would be to put your energy into taking steps forward for your recovery. Have you listened to any of the recovery interviews on the channel?
I will make I do. Thank you so much for getting back to me. I was diagnosed 15 years ago. There is so much information about Fibromyalgia and CFS. I came to the conclusion several years ago that I had CFS. A friend ask me what doctor I went to for the diagnosis and it made me doubt myself. Of course I never looked into it again. Thank you so much!
How does my neurology affect my cells in the way that they can't recuperate after exertion? I get how it can affect heart and kidneys, for example, but the unrelenting and never-ending feeling that I've run two marathons in a row...when I feel my best?
Great question! So some people have started speaking about the cell danger response explanation, which is interesting (google that). However, it's first about understanding what is involved in creating energy and recuperating from heavy energy expenditure. When we understand how this works, and the hormones and metabolic processes involved, then you can see that if there are depletions or dysfunctions in these, you experience these problems. These dysfunctions are caused by the nervous system dysfunction. But because the symptom to root dysfunction is direct, many people don't make the connection. So while this illness is neurological in origin, it isn't 'solely' neurological, in fact, there are many many dysfunctions occuring in the body as a result of autonomic dysfunction. Hope that makes sense - perhaps this playlist makes sense - if it resonates, look at reading CFS Unravelled - th-cam.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
How can one find a psychiatrist who will listen to me? I have been with Kaiser and I have all of these plus crippling depression and anxiety. Kaiser is pressuring me to go back to work because they don't want to fill out my disability paperwork. Please help. I need a referral in the SF Bay Area. 🥺
No, most of the patients remain sick their whole life. spontanous healing is very rare, maybe 4%, I read. So please do not spread false hopes. Thanks. We need medication urgently to stop the ongoing damage like there is in a progressing/chronic form of M.S. If you are mild you may have phases or years of remission but your are not healed. And there is no behaviour who can give you back your health. ME leads to death. Lists show that death in ME patients occur about 20 years earlier than in healthy people. But there are so many tragic deaths of young people, severley ill, have to kill themselves in the dark or die from multiple organic failure. One must speak for those severe and very severe patients. They have neither SEID nor Chronic Fatigue Syndrom, they suffer from Myalgic Encephalomyelitis with brain involved inflammation and spinal cored, endothelial and mitochondrial damage, immun dysfunction and autoimmunity....
I understand you stressing that is not psychological but neurological but somehow you are implying psychological disease is made up , but this is not the case, not by a long shot. You info is good but badly worded.
It's severe inflammation in the brain/nervoussystem but doctors won't do anything to treat it. The fact that symptoms are so severe should make doctors worried about how the patient can manage, but instead they leave them without proper help and treatment to help lessen symptoms. I can't understand why anyone would doubt this disease when it's so common.
So true - even after 6 years of blogging, I still see this whole 'it's all in your head' thing - crazy stuff, the dysfunctions are so numerous and many can be confirmed by good testing, so their not all invisible.
Same here 😕
The Gentle Movement true.
With long covid exploding, ME/CFS can no longer be denied as a severe and disabling physical post-viral disease. The ignorance was much worse in 2008 especially in the UK when it was labelled as a mental illness, all UK ME research was psychological only, all UK books on it was psychological and patients who couldn't care for themselves was locked up in mental institutions. Just one man was responsible for this. Politics and ego allowed this man to do this. We the patients in the US got rid of 2 CDC directors for CFS due to incompetence in 2000 and 2012
Thank you for addressing this issue with ME/CFS as a woman who has this nobody seems to care enough to help you with alot of these crazy symptoms Thank you Dave 😊
You're welcome - hope the recovery interviews support you.
Cant believe this has so few views. I've been looking for years , and this guy seems to have most credible information on CFS that I was able to find. Someone needs to make an "emotional montage" for CFS otherwise people won't share it :/
Thanks for your comment - indeed we need help to spread the word so this education reaches more people. Not sure what an 'emotional montage" is or how to create one - do you do this sort of thing?
@@CFSUnravelled1 An emotional montage would be something with sad images and video captures which takes people who experience this condition and talk about it how it feels and how much it aggravates their life all on a sad music background. You get the idea.
you mean like this - th-cam.com/video/BnRpa_yn0rs/w-d-xo.html
@@CFSUnravelled1 You got it 😅
they tend to get even more famous if there's moving pictures in them like in this one th-cam.com/video/rZdjbLFPr5k/w-d-xo.html
for some reason people respond better to this type of montage, i tend to feel others pain when they talk about it. no need for such stuff, but I guess some need it.
it's also validating for those who have been suffering of the conditions to see it, but it leaves a strong mark on those who had no clue that the disease was "so bad". I guess they thought it was all in our heads, huh ;)
Anyway, you got it!
Thank you Dan, I Hope and Pray that any person newly diagnosed with ME/CFS finds this as with personal experience and fighting this weird illness for decades, I now know it can’t be fought.
Your Post explains fully why it can’t be fought because to many core body and neurological systems are affected.
The more we fight back, the more the illness gets rooted in and affects even more body and neurological systems.
You have helped ME more than most to acknowledge the challenges that I face but you also offer hope that Recovery is possible 🙏
Thanks for the helpful comment Dave. Yes, knowing what Chronic Fatigue Syndrome is, is really an important first step.
Thank you for this great video. Unfortunately someone who doesn't know anything about this illness would not understand how severe it can be. Our best chance to explain this illness to the world is to show them severely ill patients. My adult daughter is bedridden. She can not sit, I brush her teeth and feed her. It destroyed her life and had great impact to the lives of all our family members. I had to quit my job. It is not just her. Research has shown that ME/CFS is more disabling than Multiple Sclerosis, Congestive Heart Failure and most other chronic illnesses.
For sure, there is not enough awareness. I worked hard to create a video to spread awareness, but sadly it didn't take off! :( What do you think of it? th-cam.com/video/esml2z8gKFc/w-d-xo.html
Here are my thoughts: One can watch the video and still feel very comfortable. People are not afraid of brain fog, headache and fatigue. They are afraid of death, pain, being alone, forgotten, not being able to take care of themselves, their children, being poor, uneducated, loveless, not understood, being completely dependant of someone else. It is high time to take out our heavy guns, tell the truth and make them uncomfortable.
@@CFSUnravelled1 I think it would be better to show the video with real people and some 'action' in the video so that other people can directly relate as if it was them. I also think showing extremes would be good - then people would realize - this could also possibly happen to me. They would start to take an interest in this disease. We need hell lot more awareness. Nobody really knows this disease.
although it sometimes does not show up like that i have had it for well over ten years looking after my 2 young kids at the time they are now mini adults 16/19 years i have been like this and been working the same job and ended up with lupus the people i know i get worse if i am to attend a social event like a party, sunlight, UV triggers me over doing things makes it worse I've said it time and time again no one understands think I'm lazy or a pain for them because i am like this is not trying to make their life difficult my life as become difficult i won't be able to play with any grandkids if they have any later on i can just about get out for 10 minutes and im done in walking is hard talking to people is hard brain fog is difficult they even say it is my hearing which it is not it is chronic fatigue lupus me etc mine was not being able to absorb vitamin d
I was better for a long while, but after five years of feeling worse I am losing hope again. This has roller coastered for me, the vast majority sick, for nearly 27 years.
It can be rough to go through that rollercoaster - my lowest moment was actually during my recovery when I suddenly lost all faith that I had been progressing. Looking after yourself emotionally is really important to keep moving forward.
This man just said all my symptoms, congrats 👏👏👏
I’ve been diagnosed at 16, and still extremely sick at 18, but my parents still don’t understand or care, they just think I’m lazy and want to kick me out, refusing to help or even talk to me about my health.
So sorry to hear that. Unfortunately, that happens with a lot of young people. It's difficult for an outsider to understand what ME/CFS feels like. What you need to find is an advocate, a doctor that can understand. If he can do a test that shows some physical dysfunction, he/she will be able to convey to your parents that the illness is real!
CFS Unravelled
Thank you
@@phoenixrising9352 I started testing mitochondria and glutathione levels. Those tests were fairly cheap but you can already see the abnormalities.
If you was diagnosed how was it your parents don't believe the medical professionals who diagnosed it in the first place 🤔 they should've spoken to your pediatrician since you was a minor?.
I am sending this to several people. I hope it educates, and erases judgement.
This info is all well and good but if your dr doesn’t believe you feel the way you do then there’s no hope
What about severe muscle pains and weakness especially when not having a refreshing sleep, I then feel my world is collapsing...not even winning 10 million dollars will make me enthusiastic enough to leave bed
Yes for sure - there are many many symptoms - th-cam.com/video/uspzloRQShM/w-d-xo.html
Muscle symptoms like weakness and long periods of getting back muscle strength is a core symptom of ME. You may not have it if your a mild but if your moderate or severe your muscles can rarely recover from small activity. All muscles are involved.
I got this whilst pregnant and operated on (7months) he also has it(my son) .20 year's ive had it and it literally sux .I wouldn't wish it on anyone.
Im so sorry...
Super video to demonstrate the vast range of symptoms
AND to explain our mysterious illness succinctly (8 minutes is great) to friends and family who find it even harder to understand, as they don't experience the symptoms.
An essential complement to Jen Brea's film and in fact to all the filming of those who are suffering.
I have been trying for over 20 years to tell my doctors something isn't right with me. I have other medical problems, but now it has made these symptoms even worse. My mom had cfs when she was alive. It's horrible not to get the help I need.
Thanku so much. This is me! Ive seen 25 Drs of all sorts, countless $$ and everyone has told me they know what it is, do the $ tests and admit they were wrong. For 2yrs i slept long hrs, coming up unrefreshed, bleary & had no focus or thought processing. I went from being able to function in a highly stressful position to not being able to read a sentence! My muscles ached, i walk like im 80 not 48, after 2 yrs i felt more awake by 25% but still feel unwprthy to work. No welfare, as no diagnosis? Wish there were someone in Perth Australia that knew anything about a cure or betterment.
Thank you very much Dan. I will definitely share!! I am curious: How does you thinking/approach compare with Jennifer Brea's (Director of the movie "Unrest") and the group MEAction? As you probably know they are advocating for funding so that a cure can be found. Perhaps finding the cause, as you mention, is the first step to finding a cure. I think the danger in putting all one's eggs in this basket is a sense of hopelessness while a cure is sought and feeling like there is nothing one can do but wait. By the way, I fully agree with the concepts that you present in the CFS Unravelled online course. Thanks again Dan for all of your work.
I cannot speak about their efforts as I am not that familiar with them. However, from what I understand their view is still that the illness is a mystery (ie. the pathogenesis). So whilst I am all for research that translates into more effective treatments being delivered, I think that many such treatments already exist. The key is to refine them and make them more available and to have a united front on the overall direction on where we are going with all this - it seems we are a long way from that at this stage.
Where I live, doctors don't want to talk about this. Perhaps because they don't know how to treat it.
Sadly that's quite common all around the world.
They don't even know what it is because it isn't taught at the universities. According to this survey in the UK (s. link below) 91.7% of doctors don't even know what CFS is and 70% think it's psychosomatic. The universities don't really have a clue either. th-cam.com/video/NjFKLFr8hqw/w-d-xo.html
Dan, I love your explanations. So logical and understandable.
I was reading Myhill has a test that determines ATP production which helps demonstrate fatigue levels.
Yes there are tests that can look at the mitochondrial function. It's my view however, that this is only one part of the puzzle!
Thank you for a succinct explanation for this illness. It is very helpful in discussing this with my family and friends after my recent diagnosis.
I think I’m one of the lucky ones. I happened to see a neurologist because at about 40 I was sure I had early onset Alzheimer’s. He did some memory tests and said I didn’t. Then about a year later I saw him because of wide-spread pain. Again some tests (mostly to rule other things out) and taking my memory issues into consideration diagnosed Fibromyalgia. Then came the sleep issues - the slightest stress, or time change (I traveled a lot) and I couldn’t fall asleep and if I did I’d have interrupted sleep. This was all nearly 20 years ago and the pain is mostly if the weather is cold and wet so totally manageable - but the sleep issues? They’re horrid. I take a sleep cocktail of Gabapentin, Amitriptyline and Melatonin. It took longer to figure out what drugs, how much, and the combination than it did to get a diagnosis. I say I’m lucky because I’ve heard horror stories about the pain some suffer from. I don’t think at 57 there will be a cure in my lifetime but I can always hope.
Thank you for this, thank you for the help you offer
Really appreciated this clarity
Thank you for spreading the word about this disease and thank you for lessening the stigma that comes with it, that part in particular I think is very powerful. Though I have some concern with the way psychological disorders are presented here. Be careful to make sure people don't get an idea that psychological disorders are in any way not real, because they too have real symptoms and real affects.
Totally agree with you. The issue people with chronic fatigue syndrome face is that they are often accused of making the symptoms up or not really having all those symptoms (like it's all imagined). But you are right, we must stigmatise mental health issues in any way.
No one ever mentions periodical paralysis
been fatigued since I got here on this rock. I first heard of CFS on a episode of Golden Girls.
Yes I remember that episode too!
It would be good if some celebrities would have CFS - like Avril Lavigne - that would talk about it openly. Especially someone very famous - then everybody would know this condition quickly.
took me over 25 years of going to different DR'S with fatigue and sweating, i got diagnosed with sleep apnea in 2018, but not before i ended up on icu with respotory failure, i now have a sleep machine, but still cant function, after four lots of blood tests and the DR blaming my sleep machine, my sleep consultant finally wrote to him asking for the blood test results, i am low on vitamin d and also b12, that was some 4 months ago, and still feel like a wet mop. my muscles tighten up after doing light work and it takes me 4 days to get back to normal, if that's what you call it, their is a big lack of understanding from DR'S in the uk and in the end you tend to give up, but i also carry a burden from my family who thinks there is nothing wrong with me, and i should be in full time work, I WISH IT WAS THAT EASY, if you or anyone has any solutions feel free to comment, or any magic formulas.
That's it isn't it - there are no magic formulas that work for everyone, but recovery IS possible. The key is understanding how people recover and why it works for them, even if you have to do something slightly different. Yes, unfortunately that's the burden anyone with invisible illness shares - it's very frustrating.
I have this and I'm scared of what is gonna happen :(
i feel tired since i was 16 (in 2012 ) , everyone said i was lazy , these last three years terrible things happend to me , i got verry sick , and a year ago i started to see doctors but they all said i have nothing ! my blood tets are all good the MRI !! can you belive it they even recomended to see a psy doctor and he told me i m hypochondriac !! i'm so confused what is this illness that even worse than cancer ? there were sometimes where i couldn't moove , sleep or eat , i' m not going to school , i'm not even going out ! i'm so tired of my life , i want to die !!
It’s the fight & flight stress response
Experience cfs ,me after covid infection 4 weeks after recovery impatience working out too many high intensity spinfits too soon after each other cuased. Ligh gentle cycling feels like iam in the bleep test pushed to level 17 brutal
Hello doc. I hope i can get a reply from you. I had a bacterial infection recently called h.pylori then i got through it by meds. Since then, I seem to have gotten IBS and what's getting me more anxious is that I am always tired now. I can't do things that i normally do at work.everytime i excert effort it will drain me. Even climbing through stairs will drain me. And I do feel like im going to be sick the next day after some physical work. I feel refreshed though when i rest for like 2 hours or take a nap. But what i am so worried about is will this developed gradually to much severe kind of cfs? I have this for 4 almost 5 months now. And still the same .What do you think doc.
It can but he doesn't have to. Dan is not a doctor. I'd recommend following the SIBOSOS facebook group for more info - lots of update on the newest IBS-research. Getting IBS and associated symptoms after taking antibx combo for H.Pylori is common (s. Dr. Sandberg-Lewis). Essentially it means your nervous autonomic system got overwhelmed either with toxins, infections, physical or emotional unprocessed trauma. Those imbalances add up in the nervous system that it is not able to do proper signalling to digestive, endocrine, immune, detox, reproductory and other systems in the body. Look up the vagus nerve. Vagus nerve enervates most of the organs in the body and perfectly orchestrates their functioning. IBS is primarily a 'dis-ease' of the central nervous system (at times caused by physical obstructions in the intestines) - still it is being treated mostly 'mechanically' with killing off and probiotics and low-fodmap diet. The whole picture of this condition in the medical profession has to be seen yet but we're making progress!
If you experience further assaults to your body (s. causes for CNS-dysfuction above) then it can develop into a more advanced CFS. If you start with treatments available, the condition can get better and often does.
I think I’ve got it and I hate it. It all started when I had and then recovered from labyrinthitis.
How did u recover from it.plz share
Thank you for this info. What Doctor do I go to to be diagnosed? Neurologist? I have most of the symptoms. Years ago I was diagnosed with fibromyalgia
Well, it varies between countries. However, I am uncertain what benefit you will gain out of an additional diagnosis!? (unless you have new uninvestigated symptoms - these should always be reported to your doctor) The two conditions are really just one - same root mechanism, just slight difference in expression of symptoms. My advice would be to put your energy into taking steps forward for your recovery. Have you listened to any of the recovery interviews on the channel?
I will make I do. Thank you so much for getting back to me. I was diagnosed 15 years ago. There is so much information about Fibromyalgia and CFS. I came to the conclusion several years ago that I had CFS. A friend ask me what doctor I went to for the diagnosis and it made me doubt myself. Of course I never looked into it again.
Thank you so much!
@@CFSUnravelled17:38
Thank you for your information. Drs have tried to tell me I am depressed. I know that is not the case!
How does my neurology affect my cells in the way that they can't recuperate after exertion? I get how it can affect heart and kidneys, for example, but the unrelenting and never-ending feeling that I've run two marathons in a row...when I feel my best?
Great question! So some people have started speaking about the cell danger response explanation, which is interesting (google that). However, it's first about understanding what is involved in creating energy and recuperating from heavy energy expenditure. When we understand how this works, and the hormones and metabolic processes involved, then you can see that if there are depletions or dysfunctions in these, you experience these problems. These dysfunctions are caused by the nervous system dysfunction. But because the symptom to root dysfunction is direct, many people don't make the connection. So while this illness is neurological in origin, it isn't 'solely' neurological, in fact, there are many many dysfunctions occuring in the body as a result of autonomic dysfunction. Hope that makes sense - perhaps this playlist makes sense - if it resonates, look at reading CFS Unravelled - th-cam.com/play/PLYGv2houTixmGYA8zCMhT_MSlagF0UsQE.html
I’m in a severe flare after having the Covid vaccines, I literally want to checkout🥺🥺
How can one find a psychiatrist who will listen to me? I have been with Kaiser and I have all of these plus crippling depression and anxiety. Kaiser is pressuring me to go back to work because they don't want to fill out my disability paperwork. Please help. I need a referral in the SF Bay Area. 🥺
Cure CFS PLEASE
No cure for that. Similar no worse symptoms thn this. Sadly not a lot of research into it
There's a illness with lots of different names genetic Haemochromatosis
No, most of the patients remain sick their whole life. spontanous healing is very rare, maybe 4%, I read. So please do not spread false hopes. Thanks. We need medication urgently to stop the ongoing damage like there is in a progressing/chronic form of M.S. If you are mild you may have phases or years of remission but your are not healed. And there is no behaviour who can give you back your health. ME leads to death. Lists show that death in ME patients occur about 20 years earlier than in healthy people. But there are so many tragic deaths of young people, severley ill, have to kill themselves in the dark or die from multiple organic failure. One must speak for those severe and very severe patients. They have neither SEID nor Chronic Fatigue Syndrom, they suffer from Myalgic Encephalomyelitis with brain involved inflammation and spinal cored, endothelial and mitochondrial damage, immun dysfunction and autoimmunity....
Well, I haven't come across anyone who had a 'spontaneous healing' - all the people I have seen have worked hard on their recoveries.
Most cfs syndromes are do to sooo much stress on the brain in my opinion
PVF can go
I understand you stressing that is not psychological but neurological but somehow you are implying psychological disease is made up , but this is not the case, not by a long shot. You info is good but badly worded.