So very true i have had M.E/CFS for 25 years now , and experience all of these ... i have been bedbound for over 11 years now , thank you for posting this as we just do not get validation for the hell we are living through it feel's like we are just ghost's... from Kat in Australia ... p.s yes my pic is now 15 years old i keep it up there as a memory of who i once was .
Things like this are so much more helpful than the latest fad. "I cured my chronic fatigue syndrome through brain training!" I just watched a video about that baloney. Thank you for posting reality, Whitney.
Thank you for this clear definition of the ME/CFS basics. I’ve been sick with ME/CFS for over 38 yrs. I hope that other sufferers will get early intervention and appropriate treatment in order to potentially prevent their illness from becoming severe or lifelong. At the very least I hope with earlier intervention they’ll feel validated and cared for earlier, minimize the damage of this sickness on their system and avoid the neglect so many of us have had to endure.
@@mariusskrupskis2042 Frankly, no country has been speedy on the illness. There is no standard test but your doctor will probably give you a full examination, take a history of your symptoms, run a full blood panel, possibly a CT scan, MRI and tilt table or NASA lean test, among others. There’s no standard treatment either, but doctors will treat the symptoms that you’re experiencing. They always recommend a healthy diet. Some doctors also recommend vitamins, such as B vitamins, supplements and medication‘s to help with sleep, pain, digestive, and orthostatic issues etc. It’s usually trial and error until you and your doctor figure out what works for you. I hope this helps.
@@mariusskrupskis2042, the diagnosis is by the symptoms as given in this video. There are no definitive lab tests yet, although that is being worked on. There have been studies such as one on cytokines, showing differentiation between me/cfs patients, Major depression patients, and healthy controls in 17 out of 51 cytokines, where the levels of the 17 correlate with the severity of the symptoms. As of yet there does not seem to be a definitive treatment. But there are some things that may help, such as LDN. I've been looking into this for a while and there's a lot of garbage to wade through. This is my first visit to this channel and it seems good so far.
Thank you so much. I just learned about this a couple of days ago. I watched another video and found that I have been experiencing 17 of the 20 symptoms mentioned. Although I did not know what was causing my lack of energy, when I did have enough energy to clean my room or cook a meal, for example, I would do a little, and then take a break. Yesterday I walked with my daughter to pick up my granddaughter from school. The walk is about 12 minutes each way. Sometimes I'm fine, but yesterday I had to stop and sit on a park bench after the first minute, as my back was hurting. If it's not my back, it's the sides of my waist, and always shortness of breath even though we're not walking quickly. Anyway, after resting on the bench for a couple of minutes, I was able to continue for another few minutes. Today, I am devoid of energy, and have spent most of the day in bed.
The best video I've seen so far to educate people with simple, easy to follow information. I even learned something new--I didn't know about the Nasa test. Like a few comments below, I do think some other relevant info is missing (eg. viral onset, trauma,...).
I had to beg for my doctor to listen just to get a nutritionist, let alone a diagnosis. I was told 'maybe I am just getting old'. I was like I am only 42 years old! Missing work constantly having to makeup time, and only have about 6 good hours in a day for literally anything! Then I get migraines next day to 2 days if I have a really full day, and brain fog all the time following a big push to get something done. Its awful, stealing my life away. I am only learning how to recover, but learned its lack of energy on a cellular level and possibly has to do with gut health too. But how do we get good gut health back its talked about everywhere but what/ how??
Kefir and kombucha are supposed to be good for gut health along with kimchi and a few other things I just can't remember right now. You can find some other things for gut health I'm sure on Google. I hope you get well soon, do as good as you can in the moment you are in and always be kind to yourself
We tagged an endoscopy onto my routine colonoscopy. They found stuff we could target (3 unfelt ulcers). After all of that, we could start working with some trial and error. I struggle with proteins (except most dairy), raw fruits (except berries and currants), and raw vegetables. I really miss my salads. But were putting all the clues together.
If you go to the website: MEAction.net, there are a number of options you can recommend to your health care provider. There are several educational videos they can select from, each one will earn them CME units. (Continuing medical units required for a health provider to maintain their medical license.). The website is an excellent source of information for patients and providers. Good luck!
@CricketGirrl I take my whole folder in and then just pull out the smaller packet. I think they feel relieved by this strategy. I often have a friend too.
*I've had this since 1993 and I have lost almost everything, my job, my sporting career and my dignity. I am just so stuffed all of the time, waking up feeling shockingly tired. It started after about 8 bouts of bronchitis and then a terrible flu and then all hell broke loose (M.E sufferers will know all of the weird symptoms I mean). After two years these calmed down and now I'm left worn out for about 18 hours of the day and suffer sore muscles and exhaustion after exercise. *Life often feels not worth living*
People with ME/CFS were born with it For me, I have dealt with it my entire life. 1991 working a ten year job. Miy fibro just went through the roof. Three years I could not work. Finally diagnosed in 1994. I still woek to this day. Have been strugling for the past month.
@@rickyjohnson1034 ime sure I was to I slept 23 hrs a day as a baby.though hell ride started after a fall at 17 now it's more fybromyalgia 26 years on the link is Asperger's add eds for which am sure my mum had Asperger's heds is fybromyalgia part if me as me causes muscle pain
@@rickyjohnson1034I think your right but I didn't have pain other than u s and proctalgia fungax I slept 23 hrs a day as a baby but the link is Asperger's add hypomobility for which just diagnosed 43 where is your fybromyalgia pain
@@rickyjohnson1034well as a bay I slept 23 hrs a day but pain didn't come until 17 had a fall then he'll started but muscle pain started 6 years ago genes for it autism ADHD heds
PEM actually occurs in in Post Viral Syndrome, however thats a precursor illness to ME/CFS anyway. MS and late stage cancer also have PEM, however its important to note that the unique thing to ME/CFS is that there is a *24 to 48 hour 'DELAY' before worsening of symptoms starts. In my mind that 'delay' is most likely due to the immune system gearing up (preparing) an attack. Just like it does for an infection. Interestingly PEM subjectively feels exactly like an infection. MS and late stage cancer the PEM appears to be quite soon after exertion. i.e. No Delay. Also to Remember with ME/CFS that during the 'delay' the person can feel quite normal, with their average daily symptoms. after the delay those symptoms worsen dramatically, hence the alternitive term 'Post Exertional Worsening' which is easier to understand. PEM and ME/CFS remember the 'delay'. Also if a ME/CFS person exerts during the delay period then they end up far worse off than had they rested. Sometimes resting can drastically reduce the PEM relapse. *Note in rare cases the delay can be as early as 12 hours or as late as 72 hours. Normally 24- 48 hour delay. The length of time of worsening after the delay can be 2 days to months. Sometimes some people report never returning back to base line (as happened to me) Hence Graded Exercise Therapy (GET) is a farce (malpractice) and should be avoided. 'Pace' instead with many rests a day and change your activities. This reduces PEM dramatically. Also know your baseline can move (fluctuate) so be careful. 'GET' failed to recognise a fluctuating baseline.
From data from research studies from Bateman Horne some ME/CFS patients report PEM earlier than 24 hours. While an ME/CFS patient is going to have impaired energy 24 hours after activities that have gone beyond their energy envelope, they also report onset of symptoms sooner. For instance, check out the Dr. Bateman's presentation on Long COVID and ME/CFS. Specifically 35% of ME/CFS patients reported PEM start within minutes, 40% within hours, and 25% after 24 hours or more.
Was diagnosed with ME/CFS back in 2017, didn't get an official diagnosis until 2019. Been struggling ever since. It's taken me months to find my baseline. With plenty of setbacks in-between. Pacing is not easy if you don't properly understand it. I think ME/CFS needs to be treated holistically, rather than the chasing of symptons. Particularly as new evidence suggests that there is strong links with experiencing trauma, even if this is big or small trauma. Gut health and leaky gut issues, tackling diet and consuming fermented foods may help some people. I appreciate there is no one size model that fits all with this illness. But you do have to have consistency over intensity to be able to progress. I wouldn't wish this illness on my worst enemy.
Thank you this was a clear and easy to follow video. Can you make one on why we can't "just go to the gym and get better afer some months if you just push it" as well? It seems people have severe issues understanding that.
@arlenefisher1164 I heard the dozen we had were basically relocated to take care of LC. The benefits to that is that we'll get more funding and more residents in rotation.
So what can we do about it? I’m 36 years old and had a severe case of Covid that I tested positive for still after 2.5 MONTHS!! This was 3 years ago and as soon as I got over Covid I started having these symptoms and pain in my heart and chest area I’ve had tons of tests done and docs can’t figure it out. I know 100% that I have this illness it has destroyed my life and I’ve thought about suicide many times, I had a perfect life before Covid and now I can’t do anything. I wish someone could help me
The thing that is most encouraging to me is that finally, a billion $ is being put toward long Covid research, which is very similar. The pace of knowledge is picking up drastically, therefore potential for better treatments. Meanwhile, please do t give up. Life is very different now. Change is HARD. But we can find purpose.
I am sorry for you as you are so young, I have had it for 17 years but I’m considerably older than you now 63, Actually going through it really bad at the moment also have Covid again on top so just barely functioning right now! Anyway if you are in interested I would like to keep in touch to hopefully offer you some encouragement and morale because I am trying new things, I have researched for years looking for answers, help and cures. Because I am struggling at the moment I don’t want to write to much here but I am trying new things let’s say alternative medicine and would like to keep you updated as I start my treatment journey and if I have any success then maybe that could give you hope! I have paid for my treatments but haven’t started yet simply because I’m just very ill right now and can’t drive to collect my medication. I have been exactly your situation not at the very beginning but more as the years went by because you just can’t accept that this is now your life which is a stark contrast to the life you once new, that can literally make you feel suicidal and I believe it’s a form of grief for who you once were like you have lost someone close to you that made you feel good and now they are dead, that’s the best way I could describe it. I also believe you need the validation from people close to you just like when something traumatic happens you need to be believed otherwise one can feel very isolated. It takes time to understand your limits even when you are having a good faze because you feel ooh I need to catch up and make up all that lost time to pursue all those plans you had to put on hold, the danger then is you can burn out and bam your back to zero and goodness knows how long that can go on for. Please don’t think you are of no value anymore it’s surprising what little things you can do that can make a difference even if it’s from the comfort of lying down offering encouragement to others, Remember there is also a lot more awareness of the disease now and it is been taken a lot more seriously unlike a lot of us here who is suffered in isolation many without diagnosis for decades accused of being lazy or hybercondria it is the loneliest road especially before social media, at least we now have a platform a place to communicate!
Problem is Orthostatic intolerance can also occur without a high rise in heart rate. I used to have POTS with ME/CFS but over the years the heart rate returned to a better level, however OI is still the same, and unbearable over time, I've since read OI is also caused by low blood flow to the brain, so having a heart thats not properly compensating or capillaries in the brain not dilating could be also a factor. Sildenafil (aka Viagra), proprananol and hydration with plenty of water, and medical grade 3 or grade 4 compression garments have helped me get a bit more time standing. That method wont work without compression stockings because you need to squeeze/push the blood up to the brain
Question for you - I too do compressionwear (to my knees or full leggings). Sometimes my legs get unmanageably "electrified" feeling after I remove those garments. Does this happen to you? I'm not using super high compressionwear, but I also don't just have the lightest ones.
Hard to qualify the exact use for the funding. They don't tend to financially support much exploratory stuff, especially if there's supposedly a "working treatment." Yes, GED, SSRIs, and painkillers are not a working treatment, but we have to purge that crud from the providers, med schools, and insurance manuals.
@@ambermartin3961SSRIs and painkillers are the medical equivalent of duct tape for a broken car. Depending on what you want to fix it is able to mask the issue for a while and keep going but the underlying issue still exists and might be getting worse due to this. Calling it a treatment is not only a stretch but absolutely ridiculous. Especially considering the underlying condition would get worse. Medicine needs to change. Maybe we need some sort of "open science" where the research is state funded and non profit...
Great video! One question: what studies suggest increased Alpha brain waves and deceased Delta brain waves in PWC's? My understanding from QEEG testing is the opposite: the brain is actually operating on slower Delta (sleep) waves in the awake state, not higher Alpha waves. Which is true?
Mine too. I never knew till a couple months ago. Always thought the fibro diagnosis was it. Recovering now from a debilitating crash. Trying to figure out whats going on as no doctors seem to know while suffering with brain fog...
I think the viral onset part should be emphasized at the beginning of a video like this but otherwise, I think this was fairly well done. Though of course most patients would prefer the ME-ICC primer to be used as the definition.
@@lcozzarelli a large amount of Long Covid patients also have no memory of infection, a were asymptomatic, ie the patient never felt the Covid virus, yet they came down with Long Covid. Meaning the 20% of non viral MECFS patients probably had an asymptomatic viral infection, just didn't feel the initial virus. th-cam.com/video/gDSioe4b68E/w-d-xo.html
This sounds so similar to my very first MS symptoms, but SO MUCH WORSE!! I can't understand why so many have this illness that they're not doing more research on it. It's definitely not right at all.
It's hard to write a funding proposal, when you can't really give the parameters. We just don't get money, or it runs out before the exploratory stuff ends.
Good video, but the fact that the disease is predominantly caused by a viral onset, wouldn’t it be prudent to mention that, especially while COVID-19 is causing all sorts of problems to that patient group. As they are reporting very similar symptoms to ME/CFS
I agree with mentioning the majority seem to have a viral onset, but around 20% of us have a non-viral, gradual onset, and that should be mentioned as well.
@@lcozzarelli I think that the onset is actually probably nearly always viral or physical trauma. the reason is the 20 % who thought it was gradual or did not notice an infection doesn't mean there wasn't an infection. This has been shown to be the case with Long Covid. In a recent Solve ME/CFS online presentation th-cam.com/video/gDSioe4b68E/w-d-xo.html researchers showed that the biggest factor in contracting Long Covid was in fact happening to asymptomatic people including children, who never felt sick. As their tests came back with antibodies to very recent Covid infection. We also know that everyday our bodies are fighting all sorts of pathogens yet we mostly don't feel it. So chances are the 20% of ME/CFS patents actually had an asymptomatic viral infection prior to onset of the disease, yet they didn't feel it also.
@@brobinson8614 read my message again please,it works for some and not others drinking the miracle mineral solution works for everyone in less than 12 hours thats what i am telling people now ,it ends all post viral conditions in less than 12 hours the cost of the miracle 7.69 uk pounds
Nope. Not a clear one, anyway. There have been some promising leads that tend to run out of funding. One I'm keeping my eye on is whether or not they can actually effectively read the replenishment of ATP.
Allergic reaction to mercury and other persistent environmental pollutants can cause never ending immune system activation. This causes the symptoms. I recovered. I did a video on this research.
After moving to Utah I tried to contact the Bateman Horne Center in SLC. I could speak with no one. I sent an e-mail with no response. I did see that they were not taking any new patients at the time. Why would they not even have referrals to physicians in this area to see/treat CFS/ME patients??? If I could I'd move back where we came from.
@@Truerealism747 Mast Cell Activation Syndrome (MCAS) linked to ME/CFS, Fybromyalgia and Asperger's (Autism spectrum disorder). From National Institutes of Health. Mast Cells, Stress, Fear and Autism Spectrum Disorder Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome Mast cell activation symptoms are prevalent in Long-COVID From BBC. 'Long Covid triggered our MCAS, but doctors didn't believe us'
Sorry to say but if this about me/cvs why using. White clear background??? People with cfs can't handle bright screens en whatching this with clear bride whife background is sore for the eyes..
So very true i have had M.E/CFS for 25 years now , and experience all of these ... i have been bedbound for over 11 years now , thank you for posting this as we just do not get validation for the hell we are living through it feel's like we are just ghost's... from Kat in Australia ... p.s yes my pic is now 15 years old i keep it up there as a memory of who i once was .
Do you get alot if muscle pain ldn how fatigue but not pain 26 years CFS
This made me feel like I was truly seen today!
Things like this are so much more helpful than the latest fad. "I cured my chronic fatigue syndrome through brain training!" I just watched a video about that baloney. Thank you for posting reality, Whitney.
Thank you for this clear definition of the ME/CFS basics. I’ve been sick with ME/CFS for over 38 yrs. I hope that other sufferers will get early intervention and appropriate treatment in order to potentially prevent their illness from becoming severe or lifelong. At the very least I hope with earlier intervention they’ll feel validated and cared for earlier, minimize the damage of this sickness on their system and avoid the neglect so many of us have had to endure.
what is the base tests and treatment? i think my country is very late on this illnes.
@@mariusskrupskis2042 Frankly, no country has been speedy on the illness. There is no standard test but your doctor will probably give you a full examination, take a history of your symptoms, run a full blood panel, possibly a CT scan, MRI and tilt table or NASA lean test, among others. There’s no standard treatment either, but doctors will treat the symptoms that you’re experiencing. They always recommend a healthy diet. Some doctors also recommend vitamins, such as B vitamins, supplements and medication‘s to help with sleep, pain, digestive, and orthostatic issues etc. It’s usually trial and error until you and your doctor figure out what works for you. I hope this helps.
@@mariusskrupskis2042 Same
@@mariusskrupskis2042, the diagnosis is by the symptoms as given in this video. There are no definitive lab tests yet, although that is being worked on. There have been studies such as one on cytokines, showing differentiation between me/cfs patients, Major depression patients, and healthy controls in 17 out of 51 cytokines, where the levels of the 17 correlate with the severity of the symptoms. As of yet there does not seem to be a definitive treatment. But there are some things that may help, such as LDN. I've been looking into this for a while and there's a lot of garbage to wade through. This is my first visit to this channel and it seems good so far.
Thank you so much. I just learned about this a couple of days ago. I watched another video and found that I have been experiencing 17 of the 20 symptoms mentioned. Although I did not know what was causing my lack of energy, when I did have enough energy to clean my room or cook a meal, for example, I would do a little, and then take a break. Yesterday I walked with my daughter to pick up my granddaughter from school. The walk is about 12 minutes each way. Sometimes I'm fine, but yesterday I had to stop and sit on a park bench after the first minute, as my back was hurting. If it's not my back, it's the sides of my waist, and always shortness of breath even though we're not walking quickly. Anyway, after resting on the bench for a couple of minutes, I was able to continue for another few minutes. Today, I am devoid of energy, and have spent most of the day in bed.
Finally after searching for answers over the last 40 years, here is something that describes my issues to a T.
The best video I've seen so far to educate people with simple, easy to follow information. I even learned something new--I didn't know about the Nasa test. Like a few comments below, I do think some other relevant info is missing (eg. viral onset, trauma,...).
I had to beg for my doctor to listen just to get a nutritionist, let alone a diagnosis. I was told 'maybe I am just getting old'. I was like I am only 42 years old! Missing work constantly having to makeup time, and only have about 6 good hours in a day for literally anything! Then I get migraines next day to 2 days if I have a really full day, and brain fog all the time following a big push to get something done. Its awful, stealing my life away. I am only learning how to recover, but learned its lack of energy on a cellular level and possibly has to do with gut health too. But how do we get good gut health back its talked about everywhere but what/ how??
Sorry to hear that. You seem to know a lot of things. Where do you get your info? Can you recommend YT channel or another place/space online? Thanks
Probiotics for gut health and avoiding foods that disrupt your ph levels in your gut like alkaline water
Kefir and kombucha are supposed to be good for gut health along with kimchi and a few other things I just can't remember right now. You can find some other things for gut health I'm sure on Google. I hope you get well soon, do as good as you can in the moment you are in and always be kind to yourself
Prebiotics fasting help but for myself after 26 years the problem is muscle nerve pain
We tagged an endoscopy onto my routine colonoscopy. They found stuff we could target (3 unfelt ulcers). After all of that, we could start working with some trial and error. I struggle with proteins (except most dairy), raw fruits (except berries and currants), and raw vegetables. I really miss my salads. But were putting all the clues together.
Excellent! Now, how to I get my NP or MD to watch it? Thank you very much.
I took a thumb drive into mine.
@@KidCity1985 Thanks for the tip. One day (hopefully soon) they will teach helpful ME, CFS and neuro-immune, etc, treatment in medical school.
If you go to the website: MEAction.net, there are a number of options you can recommend to your health care provider. There are several educational videos they can select from, each one will earn them CME units. (Continuing medical units required for a health provider to maintain their medical license.). The website is an excellent source of information for patients and providers. Good luck!
@@ment2bok but how do you get your provider to actually read it?
@CricketGirrl I take my whole folder in and then just pull out the smaller packet. I think they feel relieved by this strategy. I often have a friend too.
*I've had this since 1993 and I have lost almost everything, my job, my sporting career and my dignity. I am just so stuffed all of the time, waking up feeling shockingly tired. It started after about 8 bouts of bronchitis and then a terrible flu and then all hell broke loose (M.E sufferers will know all of the weird symptoms I mean). After two years these calmed down and now I'm left worn out for about 18 hours of the day and suffer sore muscles and exhaustion after exercise. *Life often feels not worth living*
People with ME/CFS were born with it For me, I have dealt with it my entire life. 1991 working a ten year job. Miy fibro just went through the roof. Three years I could not work. Finally diagnosed in 1994. I still woek to this day. Have been strugling for the past month.
@@rickyjohnson1034 ime sure I was to I slept 23 hrs a day as a baby.though hell ride started after a fall at 17 now it's more fybromyalgia 26 years on the link is Asperger's add eds for which am sure my mum had Asperger's heds is fybromyalgia part if me as me causes muscle pain
@@rickyjohnson1034I think your right but I didn't have pain other than u s and proctalgia fungax I slept 23 hrs a day as a baby but the link is Asperger's add hypomobility for which just diagnosed 43 where is your fybromyalgia pain
@@rickyjohnson1034well as a bay I slept 23 hrs a day but pain didn't come until 17 had a fall then he'll started but muscle pain started 6 years ago genes for it autism ADHD heds
ti capisco benissimo perchè a me è capitata la stessa identica cosa...è difficile farsene una ragione...ti auguro tutto il bene possibile.
PEM actually occurs in in Post Viral Syndrome, however thats a precursor illness to ME/CFS anyway.
MS and late stage cancer also have PEM, however its important to note that the unique thing to ME/CFS is that there is a *24 to 48 hour 'DELAY' before worsening of symptoms starts. In my mind that 'delay' is most likely due to the immune system gearing up (preparing) an attack. Just like it does for an infection. Interestingly PEM subjectively feels exactly like an infection.
MS and late stage cancer the PEM appears to be quite soon after exertion. i.e. No Delay. Also to Remember with ME/CFS that during the 'delay' the person can feel quite normal, with their average daily symptoms. after the delay those symptoms worsen dramatically, hence the alternitive term 'Post Exertional Worsening' which is easier to understand. PEM and ME/CFS remember the 'delay'.
Also if a ME/CFS person exerts during the delay period then they end up far worse off than had they rested. Sometimes resting can drastically reduce the PEM relapse.
*Note in rare cases the delay can be as early as 12 hours or as late as 72 hours. Normally 24- 48 hour delay. The length of time of worsening after the delay can be 2 days to months. Sometimes some people report never returning back to base line (as happened to me) Hence Graded Exercise Therapy (GET) is a farce (malpractice) and should be avoided. 'Pace' instead with many rests a day and change your activities. This reduces PEM dramatically. Also know your baseline can move (fluctuate) so be careful. 'GET' failed to recognise a fluctuating baseline.
From data from research studies from Bateman Horne some ME/CFS patients report PEM earlier than 24 hours. While an ME/CFS patient is going to have impaired energy 24 hours after activities that have gone beyond their energy envelope, they also report onset of symptoms sooner. For instance, check out the Dr. Bateman's presentation on Long COVID and ME/CFS. Specifically 35% of ME/CFS patients reported PEM start within minutes, 40% within hours, and 25% after 24 hours or more.
Yes, there is often a delay.
Excellent.
Thank you for sharing those prescient thoughts, even 3 years ago.
Very well made and informative!
Was diagnosed with ME/CFS back in 2017, didn't get an official diagnosis until 2019. Been struggling ever since. It's taken me months to find my baseline. With plenty of setbacks in-between.
Pacing is not easy if you don't properly understand it.
I think ME/CFS needs to be treated holistically, rather than the chasing of symptons. Particularly as new evidence suggests that there is strong links with experiencing trauma, even if this is big or small trauma.
Gut health and leaky gut issues, tackling diet and consuming fermented foods may help some people.
I appreciate there is no one size model that fits all with this illness. But you do have to have consistency over intensity to be able to progress.
I wouldn't wish this illness on my worst enemy.
oh yeah my worst enemy deserves this, not me
Thank you this was a clear and easy to follow video.
Can you make one on why we can't "just go to the gym and get better afer some months if you just push it" as well? It seems people have severe issues understanding that.
Best primer on CFS I've ever seen!
Thank you!
Great video 👍🏻
Encouraging - but who do we see? What can we do?
Exactly. I have more information than I know what to do with! There has to be specialists in Utah. Who?? Where??
@arlenefisher1164 I heard the dozen we had were basically relocated to take care of LC. The benefits to that is that we'll get more funding and more residents in rotation.
So what can we do about it? I’m 36 years old and had a severe case of Covid that I tested positive for still after 2.5 MONTHS!! This was 3 years ago and as soon as I got over Covid I started having these symptoms and pain in my heart and chest area I’ve had tons of tests done and docs can’t figure it out. I know 100% that I have this illness it has destroyed my life and I’ve thought about suicide many times, I had a perfect life before Covid and now I can’t do anything. I wish someone could help me
Sorry to hear that. I was wondering when you say tons of tests, what kind of tests did you have? Thanks
The thing that is most encouraging to me is that finally, a billion $ is being put toward long Covid research, which is very similar. The pace of knowledge is picking up drastically, therefore potential for better treatments. Meanwhile, please do t give up. Life is very different now. Change is HARD. But we can find purpose.
I am sorry for you as you are so young,
I have had it for 17 years but I’m considerably older than you now 63,
Actually going through it really bad at the moment also have Covid again on top so just barely functioning right now!
Anyway if you are in interested I would like to keep in touch to hopefully offer you some encouragement and morale because I am trying new things, I have researched for years looking for answers, help and cures.
Because I am struggling at the moment I don’t want to write to much here but I am trying new things let’s say alternative medicine and would like to keep you updated as I start my treatment journey and if I have any success then maybe that could give you hope!
I have paid for my treatments but haven’t started yet simply because I’m just very ill right now and can’t drive to collect my medication.
I have been exactly your situation not at the very beginning but more as the years went by because you just can’t accept that this is now your life which is a stark contrast to the life you once new, that can literally make you feel suicidal and I believe it’s a form of grief for who you once were like you have lost someone close to you that made you feel good and now they are dead, that’s the best way I could describe it.
I also believe you need the validation from people close to you just like when something traumatic happens you need to be believed otherwise one can feel very isolated.
It takes time to understand your limits even when you are having a good faze because you feel ooh I need to catch up and make up all that lost time to pursue all those plans you had to put on hold, the danger then is you can burn out and bam your back to zero and goodness knows how long that can go on for.
Please don’t think you are of no value anymore it’s surprising what little things you can do that can make a difference even if it’s from the comfort of lying down offering encouragement to others,
Remember there is also a lot more awareness of the disease now and it is been taken a lot more seriously unlike a lot of us here who is suffered in isolation many without diagnosis for decades accused of being lazy or hybercondria it is the loneliest road especially before social media, at least we now have a platform a place to communicate!
Problem is Orthostatic intolerance can also occur without a high rise in heart rate. I used to have POTS with ME/CFS but over the years the heart rate returned to a better level, however OI is still the same, and unbearable over time, I've since read OI is also caused by low blood flow to the brain, so having a heart thats not properly compensating or capillaries in the brain not dilating could be also a factor. Sildenafil (aka Viagra), proprananol and hydration with plenty of water, and medical grade 3 or grade 4 compression garments have helped me get a bit more time standing. That method wont work without compression stockings because you need to squeeze/push the blood up to the brain
Question for you - I too do compressionwear (to my knees or full leggings). Sometimes my legs get unmanageably "electrified" feeling after I remove those garments. Does this happen to you? I'm not using super high compressionwear, but I also don't just have the lightest ones.
Perfectly said!
I was diagnosed as CFS in 2007. And I have a difficult time managing my body and, more importantly, my mental health and human dignity.
Why has no one bothered to research this properly, some of us are bedbound and do nothing all day ! Try living like that I'm fuming
Hard to qualify the exact use for the funding. They don't tend to financially support much exploratory stuff, especially if there's supposedly a "working treatment." Yes, GED, SSRIs, and painkillers are not a working treatment, but we have to purge that crud from the providers, med schools, and insurance manuals.
@@ambermartin3961SSRIs and painkillers are the medical equivalent of duct tape for a broken car.
Depending on what you want to fix it is able to mask the issue for a while and keep going but the underlying issue still exists and might be getting worse due to this.
Calling it a treatment is not only a stretch but absolutely ridiculous. Especially considering the underlying condition would get worse.
Medicine needs to change. Maybe we need some sort of "open science" where the research is state funded and non profit...
Great video! One question: what studies suggest increased Alpha brain waves and deceased Delta brain waves in PWC's? My understanding from QEEG testing is the opposite: the brain is actually operating on slower Delta (sleep) waves in the awake state, not higher Alpha waves. Which is true?
Excellent information on ME/CFS.
Also - I see no mention of history of mono or physical or emotional trauma - is that a commonality? My EBV levels are off the charts.
Mine too. I never knew till a couple months ago. Always thought the fibro diagnosis was it. Recovering now from a debilitating crash. Trying to figure out whats going on as no doctors seem to know while suffering with brain fog...
I think the viral onset part should be emphasized at the beginning of a video like this but otherwise, I think this was fairly well done. Though of course most patients would prefer the ME-ICC primer to be used as the definition.
80% have a sudden, viral onset, but 20% have a gradual, non-viral onset.
@@lcozzarelli a large amount of Long Covid patients also have no memory of infection, a were asymptomatic, ie the patient never felt the Covid virus, yet they came down with Long Covid. Meaning the 20% of non viral MECFS patients probably had an asymptomatic viral infection, just didn't feel the initial virus.
th-cam.com/video/gDSioe4b68E/w-d-xo.html
What is that?
I think I may have this. I feel so tired after exertion and thinking all day. After exercise, I feel flu like symptoms
This sounds so similar to my very first MS symptoms, but SO MUCH WORSE!! I can't understand why so many have this illness that they're not doing more research on it. It's definitely not right at all.
List my.mum.just to severe ms thought I had it but it's CFS fybromyalgia diagnosis decades
It's hard to write a funding proposal, when you can't really give the parameters. We just don't get money, or it runs out before the exploratory stuff ends.
@@ambermartin3961do you have cfs
And I'll never be able to explain this to a doctor so I will just feel like I'm helpless always....
Good video, but the fact that the disease is predominantly caused by a viral onset, wouldn’t it be prudent to mention that, especially while COVID-19 is causing all sorts of problems to that patient group. As they are reporting very similar symptoms to ME/CFS
I agree with mentioning the majority seem to have a viral onset, but around 20% of us have a non-viral, gradual onset, and that should be mentioned as well.
Exactly the same. Now it's a "real thing". Who'd a guessed. :-/
@@Beekind799 I've done that and it didn't work
@@lcozzarelli I think that the onset is actually probably nearly always viral or physical trauma. the reason is the 20 % who thought it was gradual or did not notice an infection doesn't mean there wasn't an infection. This has been shown to be the case with Long Covid. In a recent Solve ME/CFS online presentation th-cam.com/video/gDSioe4b68E/w-d-xo.html researchers showed that the biggest factor in contracting Long Covid was in fact happening to asymptomatic people including children, who never felt sick. As their tests came back with antibodies to very recent Covid infection. We also know that everyday our bodies are fighting all sorts of pathogens yet we mostly don't feel it. So chances are the 20% of ME/CFS patents actually had an asymptomatic viral infection prior to onset of the disease, yet they didn't feel it also.
@@brobinson8614 read my message again please,it works for some and not others drinking the miracle mineral solution works for everyone in less than 12 hours thats what i am telling people now ,it ends all post viral conditions in less than 12 hours the cost of the miracle 7.69 uk pounds
Wait, we do have a biomarker, don't we?
Nope. Not a clear one, anyway. There have been some promising leads that tend to run out of funding.
One I'm keeping my eye on is whether or not they can actually effectively read the replenishment of ATP.
Great info, Thank you! Please add spanish subtitles. We are in real need of having access to this information in Spanish.
Why haven’t l ever heard of this before? I have heard of Chronic Fatigue syndrome, Fabromyalia also but never MeCFS
Allergic reaction to mercury and other persistent environmental pollutants can cause never ending immune system activation. This causes the symptoms. I recovered. I did a video on this research.
Lmao you really do not know anything.
After moving to Utah I tried to contact the Bateman Horne Center in SLC. I could speak with no one. I sent an e-mail with no response. I did see that they were not taking any new patients at the time. Why would they not even have referrals to physicians in this area to see/treat CFS/ME patients??? If I could I'd move back where we came from.
Thank you for this very clear video❤️🩹
going to my doc tomorrow for another errand but i wonder if getting suddenly very tired is M.E or something else 🤔
Being a little tired and suffering profound fatigue are on opposite ends of the spectrum.
"Due to the absence of definitive cause or diagnostic biomarker...?" The ICC already addressed that. Why not stick with that info as an organization?
lovely
Ty
Mayo Clinic I had Cfd
Thanks 👍😊
Rodriguez Meadows
Ruben Avenue
5740 Doyle Burgs
My me cfs cause is hyper mobile eds
Yundt Cliffs
Grimes Street
Lesly Dam
Reta Crest
Hodkiewicz Track
Joelle Village
Emilia Passage
Grayson Mall
727 Crooks Curve
Mertz Causeway
Yost Street
Wilson Anthony Gonzalez Steven Lewis Susan
Davis Charles Clark Jeffrey Clark Thomas
Hammes Springs
sounds like MS
My mum had severe ms I have me fybromyalgia clear scans for myself when done the link Asperger's add heds what we both had
@@Truerealism747 Mast Cell Activation Syndrome (MCAS) linked to ME/CFS, Fybromyalgia and Asperger's (Autism spectrum disorder).
From National Institutes of Health.
Mast Cells, Stress, Fear and Autism Spectrum Disorder
Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome
Mast cell activation symptoms are prevalent in Long-COVID
From BBC.
'Long Covid triggered our MCAS, but doctors didn't believe us'
Kuhic Plain
Emmerich Rue
Gordon Land
Moore Kevin Lee Helen Jackson Margaret
Turcotte Villages
Steuber Fort
Nitzsche Route
Alan Club
Sorry to say but if this about me/cvs why using. White clear background??? People with cfs can't handle bright screens en whatching this with clear bride whife background is sore for the eyes..
I decrease the screen light or use a black background.
Lyme disease
93386 Hintz Rapid