I’ve had cfs for 15 years. I’m so happy to hear Dr. Klimas say that Trazodone is a good drug for restorative sleep. When I first got sick with cfs I absolutely could not sleep. I used to take 50 mgs of Trazodone for sleep. But that gave me a hangover and I don’t want anything to add to my fatigue, so I’ve got my dose down to 9.37 mgs and I’m so happy I’m still getting the 10 hours of sleep I need. It’s not 10 hours straight. I wake up, pee and eat a couple of times and go back to sleep. Over the years I discovered I needed 10-11 hours of sleep in a 24 hour period. I found that if I get off my phone, put on an eye mask and put in earplugs I will go back to sleep. Getting 10-11 hours of sleep for the past 3 years has gotten rid of the flu like symptoms and I’m no longer bed bound. I’m still sick, I’m homebound without much energy, but with the flu like symptoms gone I no longer want to die.
I had a sleep study done before I was diagnosed with ME and they said everything was perfectly normal. I also have non restorative sleep. Blaming waking up exhausted (and staying exhausted) on the sleep I think is definitely misunderstanding the disease and looking in the wrong direction. Sleep isn't the issue, the body's ability to produce energy is.
Non restorative sleep is from low morning cortisol these doctors are not paying attention to the hormones. I just watched a lecture with Ron Davis and every patient they tested had low morning cortisol levels .
For some part but many of us sleep lighly and often not at all. Imagine having M.E and sleep 0 hours for two days. I also wake up every hour if im able to sleep because I have a bladder disease thats perhaps due to M.E giving wrong signals.
I have learned my energy is hour to hour not day to day. So if I do 20 minutes of activity like getting dressed or making food I need to lay down for 40 minutes. I can do this 12 times a day. But I can not do 1 hour of activity with 2 hours of rest without paying for it the next day. Once I learned this 6 months ago I was able to stop taking the 5 Oxycodone a day that I have taken for the last decade. This goes along with the heart rate tracking that the Work Well foundation is teaching.
Please appreciate that CFS/ME doctors are now being monitored and pressured to stop prescribing many medications, despite the fact that patients are stable and successful on low doses of several meds. No opiate pain meds, no benzodiazepines, limited use of muscle relaxants, and much more. There is a crisis in the chronic pain/ chronic illness communities.
かんぐちあき Yes. I hear you. Keep searching for a doctor who may help. My doc is double board certified, adjunct professor at university, and is being “attacked.” Future and quality of Life is uncertain.
@nanallen1 This IS a crisis and has set me back considerably. I came down with CFS in 1996 and never did find a physician who specialized in CFS/ME. But I was rather successfully treated for my pain and insomnia symptoms with an opioid and a benzodiazepine for 12 years. I functioned so well I had more or less forgotten I had CFS. I was able to volunteer and work part-time and was a caregiver to my partner. That was until 6 months ago when I was totally cut off abruptly from the sleep medication and had my pain medication tapered down by 60% which was (and is) torture. This was due to my double board certified pain management specialist's fear of being arrested by the DEA because of the 2016 CDC Opioid Guideline's recommended 95 mme (morphine milligram equivalent). It's NOT working and I have been set back years. With this lowered pain med. dosage I barely sleep and when I do it is once every 48-72 hours. I am sleep deprived and find it extremely difficult to function (cook, clean, bathe, drive, etc.) because of my pain. My life is reduced to staring at the walls consciously breathing to get my mind off the pain. Every chronic pain patient in the country has been adversely affected by these draconian CDC dosage limitations. Please write your legislators. No one should have to live in pain. And I want my life back.
exluvah I hear you. I appreciate. Many FMS/ CFS/ME patients are in crisis, after having a stable med regime for years. Check out Don’t Punish Pain Rally.
Thank you for some practical advise that I can implement right away in a lecture short enough for my energy and attention span to handle. I am starting to appreciate how important finding a Dr who knows the ropes on this condition is for finding a plan of management that is tailored to my unique condition. I am a long way from traveling ,even locally, to seek help, so giving me some tricks to try to improve my experience RIGHT NOW will help me reach for that larger goal. I have a hard time reading now, so I am dependent on TH-cam videos to learn what could be done so that I can sprout some hope, but so many that I have found are for drs and are over my head and leave me with no new tricks. Thank you for helping me today. I feel more hopeful and more responsible for finding a Dr who can direct my management plan. I’m going to go root in my drawers for some Spanx and add some salt to everything!
Also, take your time to eat, and chew it well. This will help with stomach acid production as well as sublingual and pancreatic digestive enzyme production.
A few years back, I had consulted with Dr. Klimas. She diagnosed Lyme disease. Dr. Klimas is an excellent physician. If you are able to see her, do so.
These videos on current possible treatments ( under our doctor’s care) are very helpful. Thank you! Having said that, It is impossible to rewire the brain if people have an unstable craniocervical junction - and this may not be rare. The sacral/pelvic complex influences the upper neck. So, any torque of the sacrum ( related to Scoliosis, or fall of tailbone, pregnancy , childbirth) will off set the upper neck - potentially causing poor spinal fluid drainage and poor venous drainage. People with Scoliosis may be more at risk for small cervical foramina, and kinking or restriction in the vertebral arteries. Again and again I observe that my sleep quality correlates with my neck issues, which are difficult to correct. One of the few experts, with important videos, is Jerry Hesch, doctorate of physical therapy. God Bless everyone out there struggling with these issues.
nanallen1 thanks for giving the name of a Dr who may understand how my messed up neck may be contributing to my problems. I am jus t learning that CFS has been my problem all along and I am overwhelmed by the search for helpful info. Sometimes patient comments are as instructive as the lectures. I would appreciate any other suggestions of TH-cam videos as reading has become daunting.
@@sacredrain7757 I am just seeing your kind reply. This has been a very long journey of 22 years for me. Led large support group at local hospital 13 years. (Former clinical diagnostic microbiologist.) Jerry Hesch has many videos on You Tube. I have searched for many years for an expert who understands pelvic function - he seems to be the most knowledgeable. The Sacro- occipital Chiropractic literature is valuable, as is the traditional osteopathic literature ( Sutherland, Upledger) I developed CFS symptoms after a neck/ pelvis injury, but my son developed it after a viral infection. But I have wondered if it is inherited familial structural issues that made him susceptible. Lots of details. Hope this info is helpful. ❤️
@@sacredrain7757 Re-read your comment. Neck - so important. Jerry Hesch, Ph.D physical therapy and more ! , seems to be a real expert on the neck. He is in Aurora, Colorado. Been trying to get there for 1 1/2 years !
Also some of us are way to sick to do anything mentally involved and not feel PEM from it. Telling me to train my brain by doing math games and concentration games -- when I had to drop out of UC Berkeley as a Math major because my brain and body were so fucked up, and all mental effort just made me feel so much sicker -- it just is not remotely helpful.
nancy is a smug and ignorant fool who just doesnt understand that ME is a serious neurological / immunological ORGANIC disease ( as classified by the WHO ), not some trivial mental illness that will respond to various activities. she is in a state of profound ignorance about ME !
Slow your roll, “Bonehead”, please. I’m in the same drop out of my life and ambitions boat with you, but taking my frustration out on the few who are even interested in helping us isn’t going to inspire them to fight for us. This was a short, narrow focus lecture that started with the statement that we all need to talk to a Dr about our individual cases. I found it very helpful to find out that the Clonazepam I have been on for 30 years was not good for my problem. I can take the salt, use compression, take my blood pressure differently and have a new appreciation for finding a Dr who knows this illness to tailor a treatment plan for me. I am so sorry for your sufferings, but please don’t attack a lecturer just because YOU did not learn anything new or useful for you. I hope you seek counseling to help you deal with your anger, frustration and grief in a more healthy way, for your own sake. With all other things being out of our control, our mental health is OUR responsibility and a place that we can all improve upon. I hope you find your way to more peace, sister sufferer.
I skip both restorative phases of sleep, woke up 42 times in the night that was only aware of it one time, I have extremely vivid dreams, CNS sleep apnea and obstructive sleep apnea. Also the longest I stop breathing was I can't remember it was almost 45 seconds and my oxygen stats were dropping so they almost woke me but then I started breathing again. I also have absolutely horrific night terrors which was what Klonopin was initially prescribed for. It is really disturbing waking up to a male figure leaning over my bed or walking towards me and thinking he's almost got me she can harm and I just start screaming. I'm talking blood curdling screams and I become combative if somebody tries to wake me because I think it's someone trying to hurt me. Klonopin stopped the night terrors. It also makes it possible to live without the Non-Stop panic attacks and adrenaline rushes I was living with. Plus it helps my restless leg syndrome and my PAC's. My doctors and I tried for so long to find something that actually works for me without having horrific side effects that were worst then the Klonopin side effects which are significant. But at least it wasn't causing vascular hemorrhaging. I have the extremely rare reaction to almost every medication that was tried on me before we found something that worked. And my doctor had never met anybody that it had something that was happening to me like blisters. And he did some research and found out it was an extremely rare adverse reaction and the medicine should be stopped. Another medication induced a psychotic Reaction to the meds Landing me in a psych ward until the medicine got out of my system. Sometimes it's so hard to figure out what is the lesser of the several evils. I also have the thing where I'm constantly in a half awake and asleep state. My kids have called me when I thought I was awake enough to talk but I was talking about things going on in my dream even though my eyes were wide open and I thought I was going to talk about the actual subject. Absolute nonsense conversations and they know now that it means I'm not fully awake and they just say they'll talk to me later when I wake up. In the past the accused me of being drunk when I didn't drink! I am definitely not criticizing by any means! I was just kind of sharing my situation. And the CPAP machine we could not find one that would work with how weak my muscles AR because it forces my mouth open and then I swallow the air instead of inhaling it through my nose and my stomach fills with air and I wake up feeling like I have to vomit get up to run and start belching so long I feel like I need to stop to take a breath and I can't so I get panicky. Another interesting thing that I can't help but Wonder if it has anything to do with anything at all ... I don't yawn anymore. It probably sounds really random but it happened when I started to really get ill. Just curious if there's a scientific explanation for it? I'm going to listen to the rest later cuz I'm falling asleep typing. So excited when I found this video! I really appreciate all the hard work you do and I think you are an absolute genius and we're lucky to have you working for I really appreciate all the hard work you do and I think you are an absolute genius and we're lucky to have you working 2 discover a way to help us
I hate to say this out loud but my nocturnal area oral appliance cost $2000 only to be reimburse d $1450 by medicare. Try as n oral as appliance that's cheaper on google or wish.com sorry for what ur going thru!
I disagree with the sleep problem, now yes, we dont get a good nights sleep, but that isnt causing our problems, they came along long before i had sleep problems, most if not all my sleep problems are as a result on none functioning during the day, im not 'tiring' myself out in a way a normal person would, because i cant get to that stage due to 'fatigue' which is completely different to being 'tired', i hear it too many times we get 'tired' easy, no, you are very wrong, we suffer with fatigue, which is our energy levels are never above 5% of a healthy person, so we dont have the energy to get 'tired', we do suffer with exhaustion, like a marathon runner whos 200 meters from the finishing line and dragging his body over the line before collapsing, this is how we are, thats not being 'tired' I was a very active young fit man, i worked hard and played hard, i would sometimes come home 'tired' from a days hard work, id have a shower, eat some food, and relax for an hour before feeling energised to do stuff in the evening (noticed i didnt have to sleep), id then go to bed after to fully recharge my battery's for the next day Since being ill, i dont wake up with fully recharged battery's, and this is the problem, its not got anything to do with sleep, although i do have sleep problems, the problem we have is our bodys are unable to store/charge our system properly, and that isnt done just during your sleep, we energise ourselves all through the day after eating food, thats how our bodys work, but we cant store that energy for what ever reason, its like we are only taking 5% of the energy from our food Ive tried for nearly 20 years to improve my life style, and nothing ive found works, and ive spent thousand on various supplements, CBT courses, even had 6 sessions with a Buddha, and all ive done is make expensive piss, My diet is clean and healthy, im now gluten and dairy sensitive, i have developed numerous other problems since being ill, i dont believe its because i dont sleep properly
I understand, from what she says, that sleep problems prevent repairs to happen in the body (since they happen during deep sleep) and might lead to long-term and deep damage of some functions and maybe energy metabolism/production or what you describe (and I do have that), having almost empty battery instead of 100%.
Winner of a video, I been tryin to find out about "myalgic encephalomyelitis definition" for a while now, and I think this has helped. You ever tried - Diyadelyn Ziyily Idea - (do a search on google )? It is a great one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the normal expense. Ive heard some unbelievable things about it and my work buddy got excellent results with it.
@@jhoncanole6726 Hi Jhon, Ive had so much therapy over the years, including the lightening process and various strict diets, none have helped, i believe that those who do recover using these treatments didn't have ME in the first place but more likely post viral fatigue, one of my family members had this and recovered fully just from CTB, yet showed very similar symptoms to me, ive tried alot more than him but all only exacerbates my symptoms.
@David Do you have any medical research to back up your claim about inflammation of the brain ? in nearly 20 years no one at the ME research center ive being to twice has has ever mentioned this.
Last week I tried to get deeper sleep using sleep aid (over counter "night time" NSAIDS), I woke up couple times from choking/stuck airways (I guess I was having sleep apnea?) Haven't found a win-win solution, just try to get sleep when I feel sleepy 😪
I would generally concur , I have always said that with M.E you do not sleep....ands this seems to be the case..what I thjink happens in more laymans terms is that you pass out from shear exhaustion. You pass out thru the constant play of an auto immune illness .Thus you have neither sufficient oxygen (accessible ) not recoridble...often the body responds by heightening the amount of oxygen in the blood as best it can. Which is by only a very small fraction.....(this is the same sense as high altitude training). thus when they come back down they can poerform better as they have more oxygen in the blood. The altitude aspect is important because it also explains the improvement of the body thru extra pressure (the opposite of altitude training) where the extra pressure allws the transit of blood to be improved, like when yoiu press on a pop bottle and it forces pop out the end....thats whats happenijng to your blood , its counteracting the restriction of blood flow via the b cell immune response. Everything about M.E makes perfect sense whichy begs thew question why dont the systems and why dont eh docs,.The build up of wrong gasses in the blood, poisons the blood and thats why we have Foggy thinking because thats the same as gassing yourself on carbon monoxide fumes all day long...Ther is nothing in the immune response that is wild. The wild aspects.....as she says at the begining is caused by M.E proper of thye Hyperthalamus fallout...so one person suffers something another does not and folk get confused to fuck becauise they dont understnad the difference of the Immune response to infection and th problems of nmthe hyperthalmus infection which than acts as its acts on each person sometimes si8milar sometims totally not similar......the cause is exactly the same ...Exactly the same.....what differs is the fallout and the symptoms. Justy trying to get that across to sufferers is damned hard work....as they got the foggy thinking. Its a simple seperation. then of course there is the added problem of mostly mis diagnosis and purposeful misdiagnosis, which really puts the cat amongst the pidgeons. WHO incorrect and misleading definition. does not help.... PS I still get offended by the term CFS...its longevity has given it a credance it has not. But then as I say mis and wrong diagnosis dont help. Thats enough for now lol.x
I have been on Amitriptyline for sleep for a bout 3 months...and I'm not sure if it's working as I readily wake at 4am then 6am most nights, and still feel like crap all day. I force myself to stay awake with coffee and take tramadol for the pain, which for some reason turns me into Mary Poppins..I cant keep still and find myself doing as much housework in that window as possible..which means I sweat and feel cold etc from the meds...they also have me on pain patches (Reletrans 20mcg) which seem to help but now I'm taking all these meds and still have diminished quality of life....I just dont know what to do anymore.
I have had ME since 2009. This lady calmly discusses how doctors who hear a sentence from a patient's mouth and prescribe a drug, routinely commit malpractice. It's just the tip of the iceberg. If you think you have this condition, find a qualified physician who actually knows what she is doing.
During the first 5 years of my diagnosis I tried 30 doctors. Most were useless. Some were dangerous. But I found the 2 that worked for me. 1 out of 15 is a terrible track record.
I find when I meditate at some point during the day I sleep much better at night. Since taking ME I find it more difficult to meditate, and can't do it at all late in day and don't even try now. Very interested in new research and deep meditation for healing but have not tried it.
I have the same issue. I used to meditate all the time. Now I am just not able to. I try different types of meditation a couple times a year but have yet to find one I can do.
@@ecospider5 Since pandemic I go to meditation zoom groups on meetups. They are usually guided which helps get me into that space. For a few minutes at least.
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(magnetron) To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron). To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better. The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible. (Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law. I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron). To stop you have to eliminate the oven out of the house. The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor. The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better. The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible. (Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law. I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / New Zealand]](http://i.ytimg.com/vi/UMimz3iDk0s/mqdefault.jpg)
![ME/CFS lecture | Dr Nancy Klimas | 2011 [Chronic Fatigue Syndrome / New Zealand]](/img/tr.png)
I’ve had cfs for 15 years. I’m so happy to hear Dr. Klimas say that Trazodone is a good drug for restorative sleep. When I first got sick with cfs I absolutely could not sleep.
I used to take 50 mgs of Trazodone for sleep. But that gave me a hangover and I don’t want anything to add to my fatigue, so I’ve got my dose down to 9.37 mgs and I’m so happy I’m still getting the 10 hours of sleep I need. It’s not 10 hours straight. I wake up, pee and eat a couple of times and go back to sleep.
Over the years I discovered I needed 10-11 hours of sleep in a 24 hour period. I found that if I get off my phone, put on an eye mask and put in earplugs I will go back to sleep. Getting 10-11 hours of sleep for the past 3 years has gotten rid of the flu like symptoms and I’m no longer bed bound. I’m still sick, I’m homebound without much energy, but with the flu like symptoms gone I no longer want to die.
I had the honor of working for Dr. Klimas back in the early 1990s. She is brilliant, compassionate, and the best advocate for people with CFS. ❤️
I had a sleep study done before I was diagnosed with ME and they said everything was perfectly normal. I also have non restorative sleep. Blaming waking up exhausted (and staying exhausted) on the sleep I think is definitely misunderstanding the disease and looking in the wrong direction. Sleep isn't the issue, the body's ability to produce energy is.
I just wrote a piece here before reading yours and feel exactly the same way
Non restorative sleep is from low morning cortisol these doctors are not paying attention to the hormones. I just watched a lecture with Ron Davis and every patient they tested had low morning cortisol levels .
@@joshwhitney7463 that would meet the definition of adrenal fatigue, i believe (?)
For some part but many of us sleep lighly and often not at all. Imagine having M.E and sleep 0 hours for two days. I also wake up every hour if im able to sleep because I have a bladder disease thats perhaps due to M.E giving wrong signals.
@@ThornyRoseV i have cfs n urinate a ton as well.believe it comes with cfs..I know..fun!ur not alone
I have learned my energy is hour to hour not day to day. So if I do 20 minutes of activity like getting dressed or making food I need to lay down for 40 minutes. I can do this 12 times a day. But I can not do 1 hour of activity with 2 hours of rest without paying for it the next day.
Once I learned this 6 months ago I was able to stop taking the 5 Oxycodone a day that I have taken for the last decade.
This goes along with the heart rate tracking that the Work Well foundation is teaching.
Please appreciate that CFS/ME doctors are now being monitored and pressured to stop prescribing many medications, despite the fact that patients are stable and successful on low doses of several meds. No opiate pain meds, no benzodiazepines, limited use of muscle relaxants, and much more. There is a crisis in the chronic pain/ chronic illness communities.
The biggest problem I face is the doctor/specialist I desperately need keeps refusing to even give me appointments to see them >:D
かんぐちあき Yes. I hear you. Keep searching for a doctor who may help. My doc is double board certified, adjunct professor at university, and is being “attacked.” Future and quality of Life is uncertain.
@nanallen1 This IS a crisis and has set me back considerably. I came down with CFS in 1996 and never did find a physician who specialized in CFS/ME. But I was rather successfully treated for my pain and insomnia symptoms with an opioid and a benzodiazepine for 12 years. I functioned so well I had more or less forgotten I had CFS. I was able to volunteer and work part-time and was a caregiver to my partner. That was until 6 months ago when I was totally cut off abruptly from the sleep medication and had my pain medication tapered down by 60% which was (and is) torture. This was due to my double board certified pain management specialist's fear of being arrested by the DEA because of the 2016 CDC Opioid Guideline's recommended 95 mme (morphine milligram equivalent). It's NOT working and I have been set back years. With this lowered pain med. dosage I barely sleep and when I do it is once every 48-72 hours. I am sleep deprived and find it extremely difficult to function (cook, clean, bathe, drive, etc.) because of my pain. My life is reduced to staring at the walls consciously breathing to get my mind off the pain. Every chronic pain patient in the country has been adversely affected by these draconian CDC dosage limitations. Please write your legislators. No one should have to live in pain. And I want my life back.
exluvah I hear you. I appreciate. Many FMS/ CFS/ME patients are in crisis, after having a stable med regime for years. Check out Don’t Punish Pain Rally.
@@exluvah
Have you gotten your pain medicine back?
Thank you for some practical advise that I can implement right away in a lecture short enough for my energy and attention span to handle. I am starting to appreciate how important finding a Dr who knows the ropes on this condition is for finding a plan of management that is tailored to my unique condition. I am a long way from traveling ,even locally, to seek help, so giving me some tricks to try to improve my experience RIGHT NOW will help me reach for that larger goal. I have a hard time reading now, so I am dependent on TH-cam videos to learn what could be done so that I can sprout some hope, but so many that I have found are for drs and are over my head and leave me with no new tricks. Thank you for helping me today. I feel more hopeful and more responsible for finding a Dr who can direct my management plan. I’m going to go root in my drawers for some Spanx and add some salt to everything!
Wow ! So glad I found this. Dr. Klimas is wonderful !!
Fantastic as always. Thank you Dr Nancy Klimas
Also, take your time to eat, and chew it well. This will help with stomach acid production as well as sublingual and pancreatic digestive enzyme production.
and if you have POTS, lay down to rest and digest when you can
Mental math? Not with ME/CFS. What needs rewiring first are the energy pathways.
A few years back, I had consulted with Dr. Klimas. She diagnosed Lyme disease.
Dr. Klimas is an excellent physician.
If you are able to see her, do so.
These videos on current possible treatments ( under our doctor’s care) are very helpful. Thank you! Having said that, It is impossible to rewire the brain if people have an unstable craniocervical junction - and this may not be rare. The sacral/pelvic complex influences the upper neck. So, any torque of the sacrum ( related to Scoliosis, or fall of tailbone, pregnancy , childbirth) will off set the upper neck - potentially causing poor spinal fluid drainage and poor venous drainage. People with Scoliosis may be more at risk for small cervical foramina, and kinking or restriction in the vertebral arteries. Again and again I observe that my sleep quality correlates with my neck issues, which are difficult to correct. One of the few experts, with important videos, is Jerry Hesch, doctorate of physical therapy. God Bless everyone out there struggling with these issues.
nanallen1 thanks for giving the name of a Dr who may understand how my messed up neck may be contributing to my problems. I am jus t learning that CFS has been my problem all along and I am overwhelmed by the search for helpful info. Sometimes patient comments are as instructive as the lectures. I would appreciate any other suggestions of TH-cam videos as reading has become daunting.
@@sacredrain7757 I am just seeing your kind reply. This has been a very long journey of 22 years for me. Led large support group at local hospital 13 years. (Former clinical diagnostic microbiologist.) Jerry Hesch has many videos on You Tube. I have searched for many years for an expert who understands pelvic function - he seems to be the most knowledgeable. The Sacro- occipital Chiropractic literature is valuable, as is the traditional osteopathic literature ( Sutherland, Upledger) I developed CFS symptoms after a neck/ pelvis injury, but my son developed it after a viral infection. But I have wondered if it is inherited familial structural issues that made him susceptible. Lots of details. Hope this info is helpful. ❤️
@@sacredrain7757 Re-read your comment. Neck - so important. Jerry Hesch, Ph.D physical therapy and more ! , seems to be a real expert on the neck. He is in Aurora, Colorado. Been trying to get there for 1 1/2 years !
Get expert opinion, but discuss
@4:30 benadryl, doxipin, tricyclic antidepressants, or Zyrem induces slow wave sleep.
@6:30 NMH,
@8:00 cognitive impairment
Also some of us are way to sick to do anything mentally involved and not feel PEM from it. Telling me to train my brain by doing math games and concentration games -- when I had to drop out of UC Berkeley as a Math major because my brain and body were so fucked up, and all mental effort just made me feel so much sicker -- it just is not remotely helpful.
i almost dropped out of school... and found mental work tiring too...
nancy is a smug and ignorant fool who just doesnt understand that ME is a serious neurological / immunological ORGANIC disease ( as classified by the WHO ), not some trivial mental illness that will respond to various activities. she is in a state of profound ignorance about ME !
Slow your roll, “Bonehead”, please. I’m in the same drop out of my life and ambitions boat with you, but taking my frustration out on the few who are even interested in helping us isn’t going to inspire them to fight for us. This was a short, narrow focus lecture that started with the statement that we all need to talk to a Dr about our individual cases. I found it very helpful to find out that the Clonazepam I have been on for 30 years was not good for my problem. I can take the salt, use compression, take my blood pressure differently and have a new appreciation for finding a Dr who knows this illness to tailor a treatment plan for me. I am so sorry for your sufferings, but please don’t attack a lecturer just because YOU did not learn anything new or useful for you. I hope you seek counseling to help you deal with your anger, frustration and grief in a more healthy way, for your own sake. With all other things being out of our control, our mental health is OUR responsibility and a place that we can all improve upon. I hope you find your way to more peace, sister sufferer.
I skip both restorative phases of sleep, woke up 42 times in the night that was only aware of it one time, I have extremely vivid dreams, CNS sleep apnea and obstructive sleep apnea. Also the longest I stop breathing was I can't remember it was almost 45 seconds and my oxygen stats were dropping so they almost woke me but then I started breathing again. I also have absolutely horrific night terrors which was what Klonopin was initially prescribed for. It is really disturbing waking up to a male figure leaning over my bed or walking towards me and thinking he's almost got me she can harm and I just start screaming. I'm talking blood curdling screams and I become combative if somebody tries to wake me because I think it's someone trying to hurt me. Klonopin stopped the night terrors. It also makes it possible to live without the Non-Stop panic attacks and adrenaline rushes I was living with. Plus it helps my restless leg syndrome and my PAC's. My doctors and I tried for so long to find something that actually works for me without having horrific side effects that were worst then the Klonopin side effects which are significant. But at least it wasn't causing vascular hemorrhaging. I have the extremely rare reaction to almost every medication that was tried on me before we found something that worked. And my doctor had never met anybody that it had something that was happening to me like blisters. And he did some research and found out it was an extremely rare adverse reaction and the medicine should be stopped. Another medication induced a psychotic Reaction to the meds Landing me in a psych ward until the medicine got out of my system. Sometimes it's so hard to figure out what is the lesser of the several evils. I also have the thing where I'm constantly in a half awake and asleep state. My kids have called me when I thought I was awake enough to talk but I was talking about things going on in my dream even though my eyes were wide open and I thought I was going to talk about the actual subject. Absolute nonsense conversations and they know now that it means I'm not fully awake and they just say they'll talk to me later when I wake up. In the past the accused me of being drunk when I didn't drink! I am definitely not criticizing by any means! I was just kind of sharing my situation. And the CPAP machine we could not find one that would work with how weak my muscles AR because it forces my mouth open and then I swallow the air instead of inhaling it through my nose and my stomach fills with air and I wake up feeling like I have to vomit get up to run and start belching so long I feel like I need to stop to take a breath and I can't so I get panicky. Another interesting thing that I can't help but Wonder if it has anything to do with anything at all ... I don't yawn anymore. It probably sounds really random but it happened when I started to really get ill. Just curious if there's a scientific explanation for it?
I'm going to listen to the rest later cuz I'm falling asleep typing. So excited when I found this video! I really appreciate all the hard work you do and I think you are an absolute genius and we're lucky to have you working for I really appreciate all the hard work you do and I think you are an absolute genius and we're lucky to have you working 2 discover a way to help us
I hate to say this out loud but my nocturnal area oral appliance cost $2000 only to be reimburse d $1450 by medicare. Try as n oral as appliance that's cheaper on google or wish.com sorry for what ur going thru!
I disagree with the sleep problem, now yes, we dont get a good nights sleep, but that isnt causing our problems, they came along long before i had sleep problems, most if not all my sleep problems are as a result on none functioning during the day, im not 'tiring' myself out in a way a normal person would, because i cant get to that stage due to 'fatigue' which is completely different to being 'tired', i hear it too many times we get 'tired' easy, no, you are very wrong, we suffer with fatigue, which is our energy levels are never above 5% of a healthy person, so we dont have the energy to get 'tired', we do suffer with exhaustion, like a marathon runner whos 200 meters from the finishing line and dragging his body over the line before collapsing, this is how we are, thats not being 'tired'
I was a very active young fit man, i worked hard and played hard, i would sometimes come home 'tired' from a days hard work, id have a shower, eat some food, and relax for an hour before feeling energised to do stuff in the evening (noticed i didnt have to sleep), id then go to bed after to fully recharge my battery's for the next day
Since being ill, i dont wake up with fully recharged battery's, and this is the problem, its not got anything to do with sleep, although i do have sleep problems, the problem we have is our bodys are unable to store/charge our system properly, and that isnt done just during your sleep, we energise ourselves all through the day after eating food, thats how our bodys work, but we cant store that energy for what ever reason, its like we are only taking 5% of the energy from our food
Ive tried for nearly 20 years to improve my life style, and nothing ive found works, and ive spent thousand on various supplements, CBT courses, even had 6 sessions with a Buddha, and all ive done is make expensive piss,
My diet is clean and healthy, im now gluten and dairy sensitive, i have developed numerous other problems since being ill, i dont believe its because i dont sleep properly
I understand, from what she says, that sleep problems prevent repairs to happen in the body (since they happen during deep sleep) and might lead to long-term and deep damage of some functions and maybe energy metabolism/production or what you describe (and I do have that), having almost empty battery instead of 100%.
I totally agree
Winner of a video, I been tryin to find out about "myalgic encephalomyelitis definition" for a while now, and I think this has helped. You ever tried - Diyadelyn Ziyily Idea - (do a search on google )?
It is a great one of a kind guide for getting rid of chronic fatigue syndrome (CFS - Also known as myalgic encephalomyelitis or ME) without the normal expense. Ive heard some unbelievable things about it and my work buddy got excellent results with it.
@@jhoncanole6726 Hi Jhon, Ive had so much therapy over the years, including the lightening process and various strict diets, none have helped, i believe that those who do recover using these treatments didn't have ME in the first place but more likely post viral fatigue, one of my family members had this and recovered fully just from CTB, yet showed very similar symptoms to me, ive tried alot more than him but all only exacerbates my symptoms.
@David Do you have any medical research to back up your claim about inflammation of the brain ? in nearly 20 years no one at the ME research center ive being to twice has has ever mentioned this.
Last week I tried to get deeper sleep using sleep aid (over counter "night time" NSAIDS), I woke up couple times from choking/stuck airways (I guess I was having sleep apnea?) Haven't found a win-win solution, just try to get sleep when I feel sleepy 😪
Get. Neuro. Mag. Magnesium. L threonate. It works two at night with melatonin. Great sleep and very energizing. Good luck.
Yes! Yes! Where is a Dr who will LISTEN to me? My Psychiatrist just told me there is no such thing as ME/CFS. 😪
I'm so sorry? What country are you in? If you'd like I'll be happy to find & give you resources that may help
I would generally concur , I have always said that with M.E you do not sleep....ands this seems to be the case..what I thjink happens in more laymans terms is that you pass out from shear exhaustion. You pass out thru the constant play of an auto immune illness .Thus you have neither sufficient oxygen (accessible ) not recoridble...often the body responds by heightening the amount of oxygen in the blood as best it can. Which is by only a very small fraction.....(this is the same sense as high altitude training). thus when they come back down they can poerform better as they have more oxygen in the blood. The altitude aspect is important because it also explains the improvement of the body thru extra pressure (the opposite of altitude training) where the extra pressure allws the transit of blood to be improved, like when yoiu press on a pop bottle and it forces pop out the end....thats whats happenijng to your blood , its counteracting the restriction of blood flow via the b cell immune response. Everything about M.E makes perfect sense whichy begs thew question why dont the systems and why dont eh docs,.The build up of wrong gasses in the blood, poisons the blood and thats why we have Foggy thinking because thats the same as gassing yourself on carbon monoxide fumes all day long...Ther is nothing in the immune response that is wild. The wild aspects.....as she says at the begining is caused by M.E proper of thye Hyperthalamus fallout...so one person suffers something another does not and folk get confused to fuck becauise they dont understnad the difference of the Immune response to infection and th problems of nmthe hyperthalmus infection which than acts as its acts on each person sometimes si8milar sometims totally not similar......the cause is exactly the same ...Exactly the same.....what differs is the fallout and the symptoms. Justy trying to get that across to sufferers is damned hard work....as they got the foggy thinking. Its a simple seperation. then of course there is the added problem of mostly mis diagnosis and purposeful misdiagnosis, which really puts the cat amongst the pidgeons. WHO incorrect and misleading definition. does not help.... PS I still get offended by the term CFS...its longevity has given it a credance it has not. But then as I say mis and wrong diagnosis dont help. Thats enough for now lol.x
I have been on Amitriptyline for sleep for a bout 3 months...and I'm not sure if it's working as I readily wake at 4am then 6am most nights, and still feel like crap all day. I force myself to stay awake with coffee and take tramadol for the pain, which for some reason turns me into Mary Poppins..I cant keep still and find myself doing as much housework in that window as possible..which means I sweat and feel cold etc from the meds...they also have me on pain patches (Reletrans 20mcg) which seem to help but now I'm taking all these meds and still have diminished quality of life....I just dont know what to do anymore.
Thank you for this.
I have had ME since 2009. This lady calmly discusses how doctors who hear a sentence from a patient's mouth and prescribe a drug, routinely commit malpractice. It's just the tip of the iceberg. If you think you have this condition, find a qualified physician who actually knows what she is doing.
That's the problem, I've had it 23 yrs, never found a good Dr.
During the first 5 years of my diagnosis I tried 30 doctors. Most were useless. Some were dangerous. But I found the 2 that worked for me. 1 out of 15 is a terrible track record.
@@ecospider5 I've found I've had to educate my Dr's I'm ok with that as long as they have an open mind.
What was the point in posting this? I’m so confused.
When was this originally recorded?
2010. Not sure why SMCI is promoting it again - must be time for a revised version?
I was so lonely. I thought I was alone and crazy for 2 decades 😭
I find when I meditate at some point during the day I sleep much better at night. Since taking ME I find it more difficult to meditate, and can't do it at all late in day and don't even try now. Very interested in new research and deep meditation for healing but have not tried it.
I have the same issue. I used to meditate all the time. Now I am just not able to. I try different types of meditation a couple times a year but have yet to find one I can do.
@@ecospider5 Since pandemic I go to meditation zoom groups on meetups. They are usually guided which helps get me into that space. For a few minutes at least.
Pituitary hormone panel
Definitely.
Anihestamines cause restless legs
Low iron /serum ferritin levrls caused my restless legs.
Iron infusion cured it.
I have sleep issues. Calcium/magnesium helps along with Lorazepam.
@@jasmineflower4809 me too .. how long you use it ?
Need help w the FATIGUE!! Sleep is fine fatigue is not
Cannot tolerate medication
I'm guessing learning and reading must be something useful in ME/CFS
xyrem is for narcolepsy isn't it?
What is the cashew your talking about? The hippocampus?
The second group would be the ME patients.
Slow H sleep?
Slow wave sleep
Abnormal hypothalamus = ME
now the cause of Chronic Fatigue Syndrome is found: radiation of microwaveoven.(magnetron)
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better.
The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
(Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
You sound like you have had too much radiation...
The cause of me/cfs is always and only psychological problems.
Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).
To stop you have to eliminate the oven out of the house.
The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.
The distance between an oven and a person is very important.After a 3 months without microwaves health becomes better.
The victims are more sensible and also the distance between victim and oven is important.After long time obesity is possible.
(Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.
I had much very positive reactions, some people recovered entirely. Sometimes not because it was being tired through other causes or diseases,not the real cfs.
Sorry I don't agree.
So many patients had this happen after a succession of herpes family viruses like cytomegalovirus, Epstein Barr and varicella