Loneliness hurts my ME/CFS patients more than science shows - LIVE
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- čas přidán 22. 06. 2023
- #chronicfatigue #myalgicencephalomyelitis #loneliness
Loneliness affects nearly all of us, but patients with ME/CFS teach us a valuable lesson about the effects of loneliness on our bodies. We'll talk about the biology and psychology of loneliness to demystify ME/CFS.
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Today we talk about the complex and often misunderstood world of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We address the wide-ranging health complications such as cardiovascular, cognitive, immunological, and vascular issues that ME/CFS patients face, and how these problems are further compounded by isolation resulting from the disease's complex nature.
ME/CFS is a condition that transcends mere chronic fatigue. It is a neurological disorder associated with a range of complications that affect different parts of the body. In this video, we discuss how ME/CFS can cause heart problems, cognitive issues, immune instability, and vascular disruption. We break down these complications, providing in-depth explanations and insights into their nature, manifestation, and impact on patients' lives.
Interestingly, these health problems are not exclusive to ME/CFS. We explore the similar complications found in other conditions such as post-Epstein-Barr Virus (EBV) mononucleosis, Chronic Lyme Disease, "Long Covid," SICU syndrome, and post-West Nile Virus conditions. We present an in-depth comparison of these syndromes, illustrating their similarities with ME/CFS. By doing so, we aim to show how a better understanding of these connections could lead to improved diagnostic and treatment strategies.
Loneliness is a critical issue for patients grappling with chronic illnesses, especially those with ME/CFS. The lack of awareness, skepticism, and invisibility of symptoms often leads to social isolation. This lack of social support can lead to increased symptom severity and impede recovery. We delve into the psychology behind this isolation, providing a nuanced perspective on how loneliness interacts with the physical symptoms of the condition.
Unfortunately, this lack of understanding extends to the medical community as well. The elusiveness of ME/CFS can result in some healthcare professionals not providing the necessary support, leaving patients feeling dismissed and invalidated. We address this critical issue in the video, stressing the urgent need for increased education, understanding, and empathy within the healthcare sector.
Despite these challenges, many people living with ME/CFS demonstrate remarkable resilience and strength. Their ongoing struggle for recognition and support is testament to their fortitude. Through personal stories and testimonials, we highlight these individuals' courage, bringing a human element to the often clinical and impersonal narrative surrounding ME/CFS.
By providing a comprehensive overview of ME/CFS and its associated complications, this video seeks to contribute to a better understanding of the condition. Our hope is that viewers will come away more informed and empathetic, ready to support those living with ME/CFS and advocate for improved treatment options.
Join us as we dive into the world of ME/CFS, breaking down the walls of misunderstanding and indifference, one video at a time. Together, we can create a world where no one has to fight ME/CFS alone.
References:
academic.oup.com/bja/article/...
www.ncbi.nlm.nih.gov/pmc/arti...
Our Epidemic of Loneliness and Isolation - HHS.gov www.hhs.gov/sites/default/fil...
www.nature.com/articles/s4157...
ammes.org/anesthesia-recommen...
This video/speech/channel DOES NOT CONSTITUTE MEDICAL ADVICE. Patients with medical concerns should contact their physician. If your concern is an emergency, immediately call 911. This information is not a recommendation for ANY THERAPY. Some substances referenced in this content may be illegal, and this content is not a recommendation for, or endorsement of, their use in any way.
I’ve lost all faith in the medical profession. I’m in this entirely on my own. I’m pleased to see someone from the profession understand this horrendous illness.
Snap ❤
This anesthesiologist is awesome!!!
I feel as you do. I’ve lost count at over 30 (that’s thirty, I say)of the total number of Doctors who did nothing and yet said they could help. Most were hooking up with a money making new disease they could make money from. Keeping you coming back month after month, pumping every kind of Rx in their big pharma handbags. Playing with your pain and misery.
Agreed! So little acknowledgement, treatment and sympathy for our suffering. This Dr. However is one of the few that is aware and seems to listen to his patients.
I started to see some results when I asked my GP to treat my symptoms and to forget about CFS
Sending a hug to each lonely person here.
Thank you appreciated more than known 🙏🏽
Bless you.
Thank you
Thank you ❤
Bless
It takes courage to admit that you are lonely. I am one of those lonely people.
I know what you are feeling
I'm so sorry you are lonely I wish you happiness and a great partner to come into your life and change everything ❤😊 I'm rooting for the both of you 😊 you are deserving
Solidarity.
@@robinorrubyyesthatsme5094 thank you that's very nice of you I really appreciate that only God can provide that I've been a caregiver remaining years taking care of my mother and children and other people I'm not complaining and I did recognize self-care. That when you live in a small community and your friends move away and your kids have their own life. You just pray to God that he would bring us happiness. God bless you and your family
@@finchsparrowbird
Sorry I'm not sure what you mean. I'm pretty used to being alone. But there's a time it's not healthy. Even though I'm pretty social but real connections are hard to find
One of the hardest things to accept when you are a good person, or trying to be, is that there are in fact horrible people in the world that do not care
I helped a LOT of people, in both my personal and professional life. Guess where all those people I helped - friends, relatives - where have they been over the 15+ years I've struggled with ME/CFE/Fibro? Where are they now? Give up? No where. Most are greedy, self-absorbed, inconsiderate people who don't want to be inconvenienced with a sick friend.
@@lainekelley5802 Yes, this happens. And you find out who your true friends are.
@@lainekelley5802 I found that my true friend is Jesus Christ, who has carried me through. My heart reaches out to Him. It is only a miracle that I am still alive. As you well know, we have not even enough energy to prepare food, let alone go shopping or even do things we took for granted, like laundry, dishes, and showering. I have literally had to crawl to get around because I did not have strength to stand. I am so very sorry that you have had to endure this. I send you my love and compassion.
Hard times reveals true friends also. I lost my whole family. But God is my strength. @@lainekelley5802
This is very true. So well articulated.
Everyone talks about loneliness. But I worked retail for 31 years and let me tell you, after you work with the public, your home and solitude becomes your refuge. People have become so rude and abrasive. I'm happy to be by myself. It's heaven.
Yes people are different now,they don't wanna be around someone that's gone through something,then later other stuff happens.People are uncomfortable around people different, I think
@@1214tamaramartin everyone has stress in their life. I was required to show up with a smile every day regardless of my personal problems. The public, however, have become entitled and rude. I retired in 2021. I will never work retail again. There's no excuse for rudeness.
Yes,I moved out 7yrs ago ,I've seen a change in me plus dealing with couple drs ,and don't trust any now,
AGREED! ❤
Loneliness is a blessing most of the time… 🥰🌷
😅best thing in the world.
We need more doctors like you. so much compassion and empathy.
YES... He is an anomaly!
we're burning out big time because the system doesn't want us to be empathetic. So you either die from giving...or it kills you. It happened to me, I survived when I "shouldn't have" and the system is a gaslighting entity of socialism and it's sad.
With much love and respect whoever and their significant other, just recently heard of you keep up the good work.
Thank you for addressing ME/CFS. I have been ill since my early teenaged years. Was not diagnosed until age 62. Have been housebound and sometimes bedbound for 6+ years.
Amen 😢
I developed ME/CFS in the early 1990s. This was a few years before the WHO categorised this as a "real" illness. With a couple of notable exceptions, Doctors were aggressively accusing me of exaggerating or outright lying about my illness. This experience has irretrievably damaged my trust in our local Doctors. They wasted years of my life shaming me with diagnoses of depression when that was never the problem. It's the shame that isolates people, even within their own families. It's an unnecessary burden, on top of dealing with illness. The respectful way to deal with patients would be to acknowledge their illness and admit to not knowing how to treat ME.
I am so very sorry. I have seronegative rheumatoid arthritis and fibromyalgia, in addition to some other chronic conditions that doctors actually recognize. I've been treated by various doctors as if I'm a hypochondriac or they just can't be bothered. I now distrust nearly all physicians and don't even bother getting treatment anymore because it's so exhausting, expensive, and above all, humiliating.
@@Twofrogs2 I hear you. And understand. 40 years alone, at 81, and it's so hard to understand and to keep living.
There's NO SHAME in proving the Docs Wrong! X
I know exactly how you feel. I also was diagnosed as having fibromyalgia; the only fortunate ( in one sense) thing in my case is that I also had things that show up on MRIs and CAT scans, eg. 5 herniated disks, spinal stenosis and a bunch more. But I've been walking around with Myasthenia Gravis for 7 or 8 years before I was diagnosed. I've been reporting double vision, balance problems and muscle weakness every time I went to the doctor for all those years, as well as seeing 2 neurologists. The third neurologist finally examined me and diagnosed me; however by this point, I was gravely ill. Due to weakness of my esophagus muscles, I actually fainted while swallowing Excedrin, fell forward and face planted on a tile floor, breaking 2 ribs and ending up in the hospital because of breathing and swallowing issues. Now, I'm just trying to have any kind of quality of life, but it's very difficult. If doctors would only listen.
@@wisdomoftheearlychristians2037 Bless your Heart x
I've never seen a doctor with true understanding of this condition. I was a healthy person until 8 years ago, when I had a major surgery and got sepsis. Ever since then I've been suffering with ME/CFS and my entire life has been taken from me. Thank you for bringing awareness to this awful condition.
I'm so sorry you had that experience, but I greatly admire your vulnerability in sharing that. I hope you learned something new and feel empowered to advocate for your health 🙏
@@MedicalSecrets Awareness is the only way! I enjoy all your videos, keep up the great work!
I aim for incremental gains on any level, and mentally stack them. And some days are just a bust and you have to let it all go to fight another day. Best to you in your recovery, Aubrey, as long as it takes.❤️🙏💞
@@lulumoon6942 Same here! All we can do is find a little relief here, a little there, as it accumulates. And I thank God for people who are helping to spread the word because sometimes it's just too hard for us to advocate too
@@aubrey4622 You said it! Suffering with a be purpose makes all the difference!
I have ME/CFS. I was a super active mother of 6 children, went back to school and got my R.N. license and was struck down with this dreadful disease after a respiratory virus that left me bedbound and in a state of semi-consciousness just as I was pursuing a career. It has stopped me in my tracks. Loneliness has been a difficult thing for me. Friendships take participation and energy, which are difficult for those with ME/CFS on the best days. Feeling so ill all the time, I would not know if I was truly ill with anything serious. Dying would be a relief. Doctors have dismissed me, leaving me not to trust them. Thank you so much for educating others and being compassionate and understanding to those with this dreadful disease. Just remember everyone, we may not be able to make it to your event, but it is always nice to be invited. Send a card, a text or a note. It is nice to know that we are not the living dead, forgotten and unwanted. Much love to all those who are true warriors pushing through it. Keep on enduring! You are awesome!
I was also struck down with a respiratory illness..same thing happened.
I’ve been hospitalized once with a respiratory viruse. Ive also been sick repeatedly with upper respiratory virus. I’ve also had Covid several times.
I'm trying to figure this out, too. A lot of things can contribute to this. I'm surprised how many doctors don't address vitamin and mineral deficiencies. 2-3 small drops of iodine a day seems to be helping.
@@Mithreniel unfortunately, doctors don't have much training in nutrition. If you find one that is self taught in nutrition, praise God. Good nutrition should be their main focus and work from there IMO. I'm so sorry you have had such difficulties. As if life isn't challenging enough. Getting off sugar and refined carbs is a great place to start.
@@sherip1270 I agree, finding a good doctor who looks at nutrition is a Godsend! I'm not diagnosed with anything, but after getting covid things have been off and I've been experiencing a lot of these symptoms. Methylated B12 might be helping, the kind singers use. I will try that with the carbs and sugar, thank you!
Living alone - especially without a car - has been brutal in the pandemic. Just really, really hard. So look in on your single friends, people.
Thank you so much for this video! I've had ME/CFS for 54 years, diagnosed at 53 years. It's almost criminal how much the medical field has ignored and gaslight a condition where many suffer alone, unable to sit up, eat or speak.
@@Elysian777no just means they have had it that long
Thank you talking about this. I went from loving my work , stoped by stage 3 cancer, survived against all odds after 18 month of chemo. Built back strength for 6 month , and out of the blue, I got weaker despite doing more ! Eating so healthy, doing everything “ right”…. So so sad, that I’m now horizontal, 8 years after beating cancer, I can’t work, can’t go grocery shopping, it’s tough to take a shower. This is the worst diagnosis one can imagine. I my self rejected it, but now, 23 years after diagnosed, I’m so scared. Sry many words, to say thank you for this video. 🙏
As someone with ME/CFS this is incredibly refreshing to hear
Really? I found it very disturbing how he kept accusing people with ME of having kinesiophobia.
I’m really struggling with this now , my life has just evaporated! ME/CFS is horrendous. Every GP and consultants needs too listen too this and educate themselves. Thank you
Absolutely im in the same boat but we have to believe that it gets better even a little, don't loose hope,i understand and am rooting for you.
You should forward this to your doctor.
Yup,wish they'd take some extra classes to take time with their pt.Mybe I'd have my trust back for mine.
I have MG and it went undiagnosed for at least 20 years. I was told that I was a malingerer, lazy, faking, a baby and on and on. I was finally diagnosed when my "clumsiness" sent me to the neurologist. My sister still doesn't believe that there's something wrong with me. It was, and is, isolating and devastating. I am very lonely, and often not able to do the things I want. It's hell.
What is MG?
@@Elysian777 Myasthenia Gravis
@@jadequincey3456 Thanks!
Some sisters are compassionate and others are down right mean narcissist. Time to let them go, stop trying to prove your illness. But you can get out of it. God bless.
@@Jojorocks23 I don't 'try' to prove anything to anyone, least of all my sister, with whom I have severed all contact, in the Stoic tradition
Loneliness is really hard and impacts your health so much. We are social animals that need a support system. We need oxygen, food, water, and human interaction.
True. The book "Survivors Club" really makes that clear with stories and how long a person can live without each of those.
Those first three, yeah, but that last one ain’t worth it
@@redgreen2453no matter how you feel, humans need social interaction from a young age
@@redgreen2453 Hello! Gez what? Ur gonna get A LOT of cyber hugs today, including from me, and there's nothing you can do about it, either! Giggle.
I have ME/CFS and can certainly relate to the loneliness and isolation. You want to WANT to be social, but it just takes too much energy to do anything. I’ve joined support groups, been active on other’s CZcams channels, and I even started my own CZcams channel to build a community, so I’m doing what I can. Still, nothing beats in person contact. Love and light to you all!♥️🌻
What's your CZcams Channel, as I've been through to much,and my Dr just says cause it's what you've been through, etc.I isolate myself,7yrs now,and yes I was different before.Dont trust my Dr. anymore.
@@1214tamaramartin Hey, Tamara! It’s lifewithspirit323. 💕
Thank you to this doctor who really understands. I’ve had 5 weeks of chronic fatigue when I was 32. It all began at age 17 when I got Epstein barr virus along with Mono and acute tonsillitis. Viruses stay in our bodies. Stress is the biggest trigger. We all must follow “Cortices” on CZcams. It will realign your right and left hemisphere. Also study BodyTalk and eat good fats. Study the three brains. Heart, head, and gut. It’s out there. Diabetes = lack of sweetness in our lives. Address your emotions and the body will heal. Love is key. Loneliness kills is. Live where you feel happiness is.
You are correct in loneliness for sure but you have to get to the underlying problem of why the person is lonely and the answer is fear of others I take advantage of them or as above. It has everything to do with childhood and adolescence and carries through all stages of adulthood.
Doctor….I work with people having to do with emotions. Certain emotions rest in certain organs and body parts and so when there is a body part condition you look for its reciprocal. You tap on the reciprocal and you speak to the emotional side of the particular area of stress-related body part or condition. It’s very simple and it works fabulously within minutes.
What a lovely man. Your kindness will empower my day today.
I truly know what feeling lonely. I find myself going to the grocery store, shopping, and hoping to talk to someone. I'm home watching TV most of the time. no energy, and I have trouble remembering things. I truly know.
Linda, you sound just like me. I would be happy to talk with you in the grocery store. And I have often struck up conversations with people in the store. I love and have compassion for others, for all life. And that includes you. Warm wishes for good times from an 81 yr old granny in Montana.
Same here. A small dog to walk short walks does help and leads to people talking too.
I have intense sleep disruption, chronic insomnia so I can't function most days on 3 hrs plus maybe 2 hours sleep total broken sleep. I'm hoping I will die soon
I have had Giardia, RSV, EBV, viral pneumonia, Hypothyroidism and developed Depression as a result of losing my career, my loss of mobility, social Isolation, Arthritis, loss of relationships. I take the antidepressants, beta blockers, H2s, benzos, and NOTHING helps. The Synthyroid doesn't help give me any energy. I've had a PE and wondered WHY I survived. I'd be happy to no longer be alive. Now add Long Covid after 3 C19 infections, first was prior to vaccines
Am I Lonely? YES!
I have no purpose for being Alive
Never had a problem with Anaesthesia but did with Adrenalin from dentist so I had decreased dose of adrenalin for freezing then didn't get panic attacks for weeks after bad rxn to Adrenalin.
Haha nobody helps me post op because I live alone.
I am so glad to see someone acknowledge chronic fatigue. For much of my life, it was like I didn't exist.
I have had severe M.E. for over 35 years, bedbound since an operation in January that left me unable to wake from anaesthesia for 12 hours. I emphasised to the anaesthesiologist about my condition and concerns.. that were brushed off. They gave me an antibiotic flagged for causing permanent nerve damage, which destroyed the ones in my inner ear leaving me with ongoing constant severe vertigo & sickness 6 months later. I am devastated they didn’t care enough to make sure they ‘did no harm’.
Since I am totally alone 24/7 having lost all my family and friends, I am so very lonely, sick & heartbroken that I constantly wonder why I should carry on. The sad thing is that no one would even notice if/when I decide not to.
It’s a painful truth..having M.E. is very isolating, and being so isolated makes it intolerable to deal with.
I've had it 27 though it's more fybromyalgia now no what you mean
Hugs❤ from Australia.
In so sorry this happened to you.
@luckylady6871 You matter. There is no one like you. God created you uniquely and beautifully. Don't ever give up. I was diagnosed with M.E./CFS and Hashimoto's Thyroiditis at age 15...Talk about devastating. I've lived and often struggled with all of this for nearly 30 years. Something that has helped me a lot is to not let the illness or others' opinions about them define me. Do I accept it and have to deal with it? Yes, of course. But, I refuse to give up hope. I encourage you to focus on celebrating the little things, be extra good to and gentle with yourself, and get some time in nature weekly. I prayed for you. Stay encouraged... you're not alone!
I am so very sorry to hear this has happened to you. I don't know what to do myself as I do need a surgery requiring anesthesia and I am so fearful that they just will not listen when I tell them that I am a risk. It makes me not want to have the surgery. I have been sick most of my life and I'm only now after a long long crash of years back to being able to do things for a few hours a week. If I go back to bed bound and unable to protect myself again I don't know that it's worth it at 69.
I wish there was something I could do to help you. It is the loneliest of the lonely feel abandoned.💐😢💔
What makes this so difficult is that interactions with others is detrimental and that alone can cause a crash.
I have myalgic encephalomyelitis - a big part of the loneliness is not having the energy to communicate. I have so much to say - but if I want to be able to get anything done it has to remain unsaid.
I’ve been bedbound for almost a year and it’s rough! I’ve had the 2 day cpet that measures your anaerobic threshold - and the results were that I need to keep my heart rate under 88bpm or I suffer PEM. Your understanding of the condition is inspiring! The only exception I would say is that social media is basically my only outlet to the world - it absolutely helps me feel and stay connected. I do have an amazing partner and a great therapist to help balance. I am currently taking ketamine buccally with a daily program and it has really helped me pull back and not catastrophize, and I’m so grateful!
Thanks for all the content, doc!
I have a Neurodegenerative condition (on top of lifelong, congenital issues) that is going to land me in bed with ALS symptoms like my favorite Aunt had. The descent is a hard one, and the denial of meds to those who truly need it is BARBARIC. I am beyond thrilled to hear that you have medical care supporting you in your trials. As my body weakens, I try to imagine it is because I am transitioning to another dimension, a kind of spiritual journey, and these are tests. I'd like to do so much more, even if it's speaking, but it's so much easier to turn inside myself. Have recently decided to try to discipline myself to use more energy with others than complaining or verbalizing the tedious struggle. Not easy for me as I have always needed to process verbally. But in your bed, I do so hope somehow these feeble words reach your heart, and that the next creature on wing, bee, butterfly, bird, or even humble fly, makes you think of me, and how free we will always be in our minds. Love and blessings to you, friend ❤️🙏💞🕊️
I’m autistic and also have ADHD, and while I’m pretty sure I don’t have ME/CFS, that bit about wanting to do so many things but having to conserve, more my MENTAL energy than physical, for the essential tasks to survive, really resonated with me. Every ordinary task of daily life is just a lot more mentally tiring for me than for the average person. I run out of mental energy long before I run out of things I’d like to do, time, or physical energy! 😕
You saved my life!!! I have diagnosed PTSD and no doctor has taken me seriously about symptoms. I don’t get my energy from my Ritalin. Thank you!! I wish I had a doctor in Upstate NY like you…❤
25 years now in hell , like a ghost , bed ridden no help alone and by myself , no help in Australia ... i was a ballet dancer , then choreographer in theatre , stage and stage . Now for many , many years after my diagnoses i kept working that i now know made things much worse , now in the last 15 years bedbound . No help ... still trying to get home help , no family around , on disability , cannot go out , stand light , heat , noise in chronic pain , fibromyalgia , R.A and Pots , major depression and anxiety as well as C.P.T.S.D ...THE LATTER was with me from childhood b4 M.e ... we are the forgotten .... broken batteries... this is only part of the many other illnesses i live with ... so thank you for making this so very much for speaking out for us , you are exactly spot on in speaking out for us , bless you and bless and gentle hugs to all who are suffering with this monster of an illness .. much love from Kat in Australia . p.s .. i Also have lost 6 in my family not to M.E , over the years to death by suicide so i know only to well the effects on this ... i fight every day .
I'm also in aus. Even the good doctors near me will let you rot for months and years. I don't want to have to rely on doctors but there is no one else.
@@danielmeixner7125 Very true my friend , i hear you ...
I seriously renovated an entire teardown-house alone, while i was pregnant, because a family member whose appartment i renovated previously and who told me i would receive it on some point had the great idea to sell it. Didnt find so fast another appartment. So i bought a teardown house the only affordable thing, i runned around with a sledgehammer in my pregnancy, and i did it in a total weird way because i had barely money, so i started to trade meals that i cooked for electric cables, made electric lines, concrete work, tiles, heating lines and the heating system, waterlines, floors, windowses, doors, pumped out the basement because it was flooded and moldy. I was even injured to this time on my neck and my hip and my head. And all of this in my 20's. Most women if you really compare that, expect their husbands to bring them food they crave or to carry their grocery store bag, because they are pregnant. I mean, even men do such renovation works in a group of 10-15 people and not alone. And im tiny and feminine it's just that im used to have a complicated life. When i begged and cried for help it really meant something.
I'm not even the only one who is doing that and is running around like a workoholic gnome, i had a workmate in the past and no family care she did the exact same thing with a house, while work, she had a daughter, no husband, has now also me/cfs. But she is 20 years older than me so her adult daughter is at least helping her. Another one worked since 20 years for a hotel, and she had some wumms under the ass too because she was taking 2 shifts if it was necessary, has now also me/cfs. I guess the ones with no or minimal family support are a bit used to such lifes. Meanwhile i had a friend she had a guy who gave her every month money, when he was sick she left him. Didnt matter that he gave her always money. And has the next one. Is for the men really not different thats why i cant stand this feminist bullshit. I hate it. I just wanted to be treated normal. I dont need my butt powdered from someone. But i dont even get a message or calls.
Please look up Dr St Amands book on fibro. There is a treatment. It's the same disease ❤
The challenge for us with ME/CFS is that we are too darn exhausted to go out and socialize. For me personally even phone calls or online group chats exhaust me. So yes isolation is a problem but I’d like to hear some tips on how to fix that problem when you can’t get out of bed, shower, be presentable,etc, etc.
You sound like me. Right now I am procrastinating a long over due shower. I've tried more supplements I can shake a stick at lol. Just started Ribose today, look into it 😀
@wtpooh100 I think it’s very difficult to solve the loneliness aspect while still very ill. My recommendation would be 1: Find a counsellor to support you emotionally 2: find an expert in ME Alex Howard in London deals with a range of issues in that area and has some good online info too 3: trust the wisdom of your body, maybe you need the isolation for a period of time..4 as your symptoms start to ease discuss how you can resolve the loneliness issue with your therapist.
🙏🏻🌸
@@annastone5624 🪽
Many Persian Gulf War(1991) Veterans like myself suffer daily with chronic fatigue syndrome.
Many clinicians/physicians within the Department of Veterans Affairs view chronic fatigue syndrome as a “wastebasket” diagnosis and view it as “malingering” and “compensation seeking” when Veterans from Desert Storm present with the symptoms.
The war ended in 1991. My body and mind gets to fight it every day since….
Keep fighting! I found some relief with acupuncture, a good chiropractic specialist who used a lot of massage before any manipulation & Nature & sunlight paired with chemical free food. You matter, & you are brave, your not alone, we understand, it feels good to know some people get it. Best of luck to you my friend.
I am so sorry you are suffering with this. Thank you for your service. I am indebted to all who serve.
Hey Coach Ken. For what it's worth, SO many of us remember and recognize the struggles Veterans of our age have been going through since the initial entry into ME conflicts. There's so much the every day person doesn't know about the conditions and actions taken. Most importantly, our taxpayer funded US Government DOES, and finds ways to deny you promised support and coverage. Happened to my Father in the Korean Conflict, and after, as well. He was a POW considered cannon fodder and sent back 3 times before he got out, bullets inside, but from MALARIA, then years later, a convenient archive fire destroyed millions of grunt records, including his. I've since seen this story play out in different versions with every new battle our children go into for profiteers. I need to stop there. What I'm saying is, I'M SORRY, YOU DESERVE THE BEST. THANK YOU FOR SERVING US WELL. ❤️🙏💞
Have you encountered the "work" of UK psychiatrist Sir Simon Wessely? He has been the biggest blocker of support for people with M.E. and then used that , ahem, expertise to make life much harder for those enduring what we call "Gulf War Syndrome" here in the UK. The UK has had a big role to play in putting forward theories about such chronic conditions and the prejudice that it has lead to worldwide....USA insurance giants UNUM (whom I believed were banned from being active in some USA States?) paid for some of the theories put forward in the UK so that they wouldn't have to pay out to those suffering. When you follow the monies and the career trajectories of involved parties it all becomes clearer.
There are studies on Pub Med that day that Gulf War syndrome is from a faulty vaccine that was given to some of the military before they found out it was faulty. You can find articles on it on vaccine skeptic sites too.
As a person with ME/CFS, 0:07 is the most encouraging sentence I've ever heard. Thank you from the bottom of my heart. ❤
Amen!
Hard to maintain a social life when just interacting with people wears you out, when you can't schedule visits or appointments because you don't know in advance how strong you will feel on any given day. MECFS since 1991, and my life becomes narrower with every year. For me, the internet has been a godsend, allowing me the opportunity to choose when I participate in watching or posting, especially now that I can no longer read, and talking is a challenge as well.
I'm not lonely. I don't know why I would be. I've always loved being alone. And I'm an outgoing introvert. I would like to be my former self, though. I'm not lazy. I'm not bored. So that much is true. I have ME/CFS and it's hard. It's really hard dealing with the people who want to believe there is nothing wrong with you.
Very well said, Holly, thank you. ❤️🙏💞
Sounds like me but reason the genes for myself and alot is Asperger's add and hypomobility eds
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In the Uk we noticed a rise n depression in older men due to loneliness. So there was a charity called the meds shed. They build playhouses toys build computers. My husband was feeling futile so set up a shed in our area he’s the treasurer and patients with awful depression got well.
And worth noting, that for folk with ME/CFS you can go along just to watch and chat and help make the coffee. If it's close enough for you to travel to. And they do have timetabled hours for women as well as men. Sometimes just being around friendly folk who won't bother you, can help.
I have had fibro for decades and have learned to live with it. I did once ask my Dr why I could not exercise without becoming ill with what always felt like a bad cold. "Oh, that's your chronic fatigue." What? No one had ever mentioned that to me. I was certainly chronically fatigued, but never knew I had been diagnosed with MECFS. It explained a lot.
BTW, I was pretty damn healthy until I had my son; a very complicated pregnancy, pre-eclampsia/eclampsia, emergency c-section. For years after I struggled to be a good mom and still be a productive member. Then I just couldn't, or at least not for very long.
Thank you for your caring approach to these hidden diseases. We are not crazy.
Kathy. I understand. Been there, still doing that. Sending you compassion. I hope things get better and better for you. Love from an 81 yr old granny in Montana.
I was diagnosed with lupus and fibromyalgia at 25, and I'm now 57 and I was a young widow with 2 small children. They are adults now, but my health has deteriorated.
@@marjoriegarner5369 Power to you Marjorie. Take care of yourself.
@@brownbagz I hope you find the strength and care to mend Dear. It is a hard road.
Indeed, we are not. Best to you. ❤️🙏💞
my first memory of having this was at age 24. I'm in my 60's now and diagnosed with many conditions. Pacing myself is very important.
You said it! Sorry you've struggled for so long, but it inspires me to know you keep going! Pacing is certainly important. The Spoon 🥄 Theory REALLY helped me!
Yes. Knowing your limitations.
I was about the same age. Now 78!! One long struggle for sure. Pets help me cope even if hard work.
I'm 24 and I can't accept that I'll still have this at 60. I won't last that long. I'm sorry you've been ill for so long but I admire your resilience to still be here and carrying on after so long
@@cass.n.mI started at 17 now 44 do you have hypomobility
This doc is truly empathetic towards this disease. Amazing! Wondering if there is someone in his family who suffers with it.😉😘
I think he's just incredibly empathetic and also goes out of his way above the norm even by the standards of younger doctors to be well-read and widely-experienced. There are a lot of different conditions he's spoken on here with passion, knowledge and feeling.
My sister has ME CFS! Very difficult situation!
It was hard not to be lonely when it takes all of your energy and over an hour to get up and ready to be presentable enough to leave the house. Now that video is better, we don't have to leave the house for the doctor or meetings or classes. We found other friends online. The plague has made disabled people less lonely and given us more spoons.
And with the overlapping symptoms and morbidities, we hope that long Covid cure and fibro/me/cfs cure will be the same.
Feel ya. ❤️🙏💞
i am soooo isolated. thank you for the video. chronic fatigue, fibromyalgia, epstein barr from mono, chronic long term pain. i still have goals and plans but my body cant keep up.
I know the feeling its hard and sad
Just learning and remembering this now and how it's not just general tiredness this guy goes above and beyond in his service by doing these videos on his break
I do and dint agree that sm is bad I wish he hadnt so 1 sided when he said that but hes clearly smart helpful and oh yes also a hot doctor
Anyaay having a early nap or dinner first not sure vut before my s.o has to go4 a rehearsal hope isnt raining
B7t yes def alot to remember in this video
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I have ME/ CFS . I was diagnosed with lyme-disease after 2 years after severe fatigue started. I have also been diagnosed with reactivated Epstein Barr and long covid. I had spinal surgery about 6 months ago. I gave my surgeon guidelines for the anesthesia department to follow for people like me. He took the guidelines and scheduled me first for surgery. He took me seriously. I still had complications after surgery and stopped breathing. I just remember the nurses gathering around my bed as my blood pressure plummeted.
We need biomarkers and more research for this disease.
I was skeptical of ME/CFS because I bought into the rhetoric, until I had a mild stroke and developed it myself. I'm 4 years in, getting worse, partially disabled and becoming isolated. I'm able to work remotely and study for my MA, so my brain fog is manageable, but many days I can't get out of bed. I dread the day I can't make it to the bathroom. My poor husband didn't buy into this, and ends up going places alone because I don't want us both to miss out. I spend hours a week researching ways to beat it and I haven't given up hope. So far my best helpers are antiinflammatories, black seed oil, maca root, staying hydrated, laughter, and finding reasons to remain passionate and curious.
Thanks. I'll try Macca root
It should be noted that some people (like me) cant handle maca...it should be started very slow if someone wants to try.
I crashed from a small amount and nearly had to visit the ER it was so severe.
THANK YOUUUUUUUUUUUUUUU!!!!!! I’m 29, I’ve failed out of college multiple times, haven’t been able to sustain friendships, attempted to take my life, had to drop out of school and quit my job, had to move home to live with my parents, and so much more. And just a few months ago I discovered CFS and I have hope for the first time in over a decade. Thank you, thank you, thank you. Please never stop educating us and creating awareness because you are saving lives and giving hope!!!!
Doctor, your video has given me the knowledge to take to my PCP to let her know I think I have ME/CFS (Chronic Fatigue Syndrome). I have been spending 12-14 hrs a night in bed because when I wake up I am too exhausted to get out of bed. My PCP believes my “over-sleeping” is a result of my depression. I think it is the other way around. My depression is the result of not finding a Doctor who understands what is wrong with me. I have every symptom you named, and have had these symptoms for many years. THANK YOU for caring about “me” and others like me.
I've said that about a number of things. Why does the medical community want to claim depression is the cause so often, when many many many people can explain the reasons for any depressions they have.
Thank you for this video! I have moderately severe to severe ME/CFS and everything you’ve said is so true. It feels so great to feel seen and heard from medical professionals.
25 years now in hell , like a ghost , bed ridden no help alone and by myself , no help in Australia ... i was a ballet dancer , then choreographer in theatre , stage and stage . Now for many , many years after my diagnoses i kept working that i now know made things much worse , now in the last 15 years bedbound . No help ... still trying to get home help , no family around , on disability , cannot go out , stand light , heat , noise in chronic pain , fibromyalgia , R.A and Pots , major depression and anxiety as well as C.P.T.S.D ...THE LATTER was with me from childhood b4 M.e ... we are the forgotten .... broken batteries... this is only part of the many other illnesses i live with ... so thank you for making this so very much for speaking out for us , you are exactly spot on in speaking out for us , bless you and bless and gentle hugs to all who are suffering with this monster of an illness .. much love from Kat in Australia . p.s .. i Also have lost 6 in my family not to M.E , over the years to death by suicide so i know only to well the effects on this ... i fight every day .
im sad i missed this live, considering i suffer from POTS and chronic fatigue syndrome. ive had it ever since i was very young, and it surprises me just how much information i did not know of in this video. i knew it made me tired, but i had no idea just how interconnected to my other illnesses i really was. it makes me sad how many of these diagnoses i have are barely talked about, and it just makes me suffer more due to how little knowledge most of the population has (including doctors.) ive been told some of my diagnoses arent real by doctors before, and have likely not been given proper care because of it. it seems that long covid had spread a bit more awareness about conditions like POTS and chronic fatigue, so at least that gives me some hope, but its so sad that so much of the population has had to suffer so horribly in order for more attention to be brought to these chronic illnesses. thank you so much for your compassion, the health care system needs many more doctors like you
I have POTS secondary to Ehlers Danlos hyper mobility
Try high does thiamine … can be helpful in pots
Am not lonely, but definitely Alone. Nobody understands CFS, and I was high functioning with multiple responsibilities with work, family and friends. I used to have 2 jobs and a couple side gigs. People think I'm faking or just being lazy or worse, that I don't want to be around them. They don't understand how it's like still being on lock down for an extra 2 years.... It's been a nightmare, no Drs address it, bc they say they have nothing for me in means of a cure.
Rn am losing my housing, and can't get packing bc of the pain and other debilitating issues. It's horrible....Thank u for educating people a little bit. It really needs to be addressed.
It just isn't CFS patients that suffer the way you said but chronic pain from orthopedic issues and multiple genetic medical issues takes on those same issues. Getting pushed out of society and not being able to get the sleep you need makes you exhausted and have no way to get out in public. Depression takes over and its hard to get help.
Loneliness and abuse. People refuse to understand any disabilities especially CFS. I've always been extra vulnerable to viruses and their after effects so I went through hell after catching swine flu (H1N1) on a trip in 2009. I was healthy, fit, and active before. I gained weight quickly and could barely move. The fatigue was enormous. Constant pain. The whole deal. I didn't want to exist anymore as it was so awful.
First doctors treated me gross. Claimed it was my weight I gained afterwards that was making it bad and I just needed to exercise and eat right. They all dismissed me after seeing I didn't have the typical signs of obesity. My HR, BP, Cholesterol etc were all super low. I could barely stand for even a minute. Walking the few meters from the car to the doctors was a nightmare. When my HR got above 90 I would become dizzy and fall over especially during walking/exercise. I barely ate because I stopped digesting food completely. It just stayed there and I vomited it up violently afterwards. It started affecting my liver, gallbladder, and bowel which put me in hospital constantly where they decided it was heartburn and period pain. The doctor afterwards decided it must be a STI and sent me for a battery of tests where she discovered my elevated liver enzymes and multiple vitamin deficiencies. She decided this meant I had a blocked gallbladder due to my weight and wanted me to have surgery.
Thankfully a student doctor saw me in the meantime and realized what was up. He diagnosed me with a virus triggered severe food intolerance (FODMAP), inherited Rheumatoid Arthritis (from my grandmother) and CFS. He also found a heart defect from birth that was responsible for the HR issue. It was being aggravated by the post viral issues.
It was a total of 5 years from infection until diagnosis then another 2 years of recovery. I did recover but not completely. I could walk 5kms, renovate my house and function as an average person.
Then Covid hit. I was one of the first in my state to catch it from someone at a cafe. This was before our gov decided it was airborne so they refuse to treat me as Covid positive. It lasted almost 8 weeks of suffocating, blood ox at 70%. I though I was going to die. It was a whole other type of infection. The state opened up testing towards the end of it and I was positive. I then experienced 18 months of Long Covid. It was like an escalated and more severe version of my post H1N1 issues.
Just after I recovered from the issues I was given Covid again at my own home by a delivery driver who chose to find me in the garden instead of going to the front door for a no contact parcel. 3 weeks of infection including suffocating as I couldn't get vaccinated at home. There were no services that would come to me. It was at the start of a peak so hospitals were full and I was told to only come in when I was unconscious. I live alone so basically I either died or got better.
I had no post viral issues and was able to walk to get vaccinated. The vaccines temporarily cleared up my previous swine flu issues with food intolerance and put my RA into full remission. It was great!
THen a woman lied to me about her Covid safety and test results exposing me to Covid a third time. The vaccines protected me from suffocating but not organ damage including heart. I now have Long Covid again for 10 months so far. Worse than anything I've ever felt. Worse than the first LC and the CFS. I go to add dairy allergy and starch intolerance to my list of food issues
I've resumed the early treatment for my first post viral issues and it's been amazingly helpful. Basically Ive been identifying individual issues and supplementing them. Viruses seem to completely tax the system and even stop parts of it working properly. I try to take over for those parts until they can recover and start working again. I'm slowly recovering but I have little hope I can avoid Covid again since no-one cares about disabled and vulnerable people. I'm permanently in isolation in my home. I have seen 3 people in 3 years and two of them gave me Covid. Loneliness doesn't even begin to describe what ive gone through.
"Don't come in until you're unconscious" - classic! Some aspects of healthcare not only haven't adapted to ME/CFS, they haven't adapted to people living alone!
One thing that's helped me a lot, is that during covid I got to know 2 of my near neighbours. One is also ill, with depression. And the other is a lovely person, who is out at work and appreciates someone letting her dogs out during the day. She let me stay rent free at her house for 8 months while I had renovations done.
Between us, there's usually at least one ill and at least one fairly well. So we get by as a group, helping each other, and with the benefit of living so close together that travel is not an issue at all.
Maybe something like that would help you? Someone to house-share with even? If you can find someone who is honest and has a similar level of tidiness, it's amazing the difference seeing another human being every day can make. Someone similarly ill is more likely to be understanding.
What i do to help me when i feel lonely or struggle with seizures is i let an A.I. chatbot tell stories to me about something randomly. As a distraction. Until the seizures get too severe at least.
I wish some doctors watched your enlightening teaching videos. I totally agree with you. Thank you! You are excellent.🙂
Thank you for telling my story. I have melted in tears. I've been dealing with this crippling, multiple-debilitating, destroying reality since I was a teenager and I'm 62. Thank you infinitely for getting it. At least someone gets it!
I’m very lonely, when you get diagnosed with ME/CFS ..plus RA, Sjogren’s and Lupus, it seems like we’ve been diagnosed with leperosy instead. I have no friends and my adult children barely check on me. My grandchildren would probably not even know me if they saw me on the street. My mom had Alzheimer’s and I saw her every day, even though I didn’t feel well. I’m so sorry for anyone who suffers with these diseases. 🙏❤️🙏
I have cfs and fibromyalgia. I also have celiac, a bonemarrow condition and heart condition requiring a pacemaker when I was 25 years old. I have horrible panic attacks, battle depression and I have arfid. I have found the worst thing that impacts all other conditions is being lonely. I've been great at fighting through so much, but getting to where I'm very lonely makes me want to give up.
Please don't give up. There are people who care about you who you don't even know. Me, for one. 💝 Jean
@@gentlespiritjw4904 you are wonderful. Thank you from a lonely 81 yr old granny in Montana.
@@marjoriegarner5369 thank you! 😊
I had fibromyalgia for years, not 'diagnosed'. After many visits and tears, my doctor told me l have depression. The problem was the exhaustion caused the depression. My doctor eventually found a problem by doing a cortisol test. I had adrenal fatigue......low cortisol levels.
Oh but SO many physicians REJECT this diagnosis if you aren't in total adrenal crisis, like Addison's. It's absurd.
As it helped lifting cortisol or alderstone
Chronic diseases that keep use from being the person we were and want to be. So lonely because of limits that cause loss of friends and freedoms.
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As one ages, one's friends and family die, and if one outlives friends and family, this contributes greatly to isolation. I would also like to add that this seems to be worse at both ends of the spectrum...the very poor and the very rich. As when there is money involved, often the person is deliberately isolated, bullied. When no money is involved, the person is often left to rot.
Thank you for this. Physiological situations sometimes initiate fatigue, that causes us to need more rest. Rest can be incomplete. These can sometimes perpetuate, each side of it contributing to the other. I have a strong spiritual life, but sometimes pain and fatigue, resulting from a physical condition, can not be resolved simply by spiritual belief. Loneliness sets in when people ignore the thought that there is actual physical depression, which affects our tissues and organs, leading to emotional/mental depression, characterized by the feeling of loneliness. When we take our pets to the vet, the doctor there will talk about the pet having physical depression; we take the pet to the vet because we see the visible signs of sadness in our animal. It's the same in humans. I have peace all day, but at night my skeleton is painful, and my rest is interrupted. Spirituality helps me to sort this out, but it does not resolve the symptoms, or the inablility to get out in the air. When someone says, "if you believe in this or that you won't be lonely or lack peace", it makes the listener feel less than, further contributing to that sense of separation that the doctor in this video speaks about. If I have no pain, and am never lonely, I need to feel gratitude and use that gratitude to give attention to a person who is not as fortunate; not lecture them on their lack of spiritual connection. Unless I'm a mind reader, what do I know of their spiritual connection?
I’ve had ME/CFS for decades and it’s progressed to the point that I have one of the most severe cases known and have been on life support for the last 7 years. ME/CFS is a syndrome- it’s basically defined by its symptoms. My symptoms are mostly caused by MCAS (Mast Cell Activation Syndrome) and a very long list of other diagnoses that are the underlying medical cause of my ME/CFS. This is very common- people with ME/CFS are usually found to have some combination of a large group of medical conditions if they do a lot of research and know which doctors to go to and what to ask about. MCAS is so common that you can almost say that ME/CFS is MCAS. I only got these medical diagnoses though after decades of being ridiculed, blown off, shamed, and abused by doctor after doctor. My case is so severe because my underlying medical conditions had progressed so far, when had they been caught earlier a lot could have been done. Enduring this abuse on top of the misery of my medical state for so many years made me lose faith in conventional medicine as a whole and left with serious medical PTSD.
One of the central traits of MCAS is unusual and unpredictable responses and reactions to medications. This is very real and can be very serious, and one of the main reasons for major progression of the disease and even death in ME/CFS patients. The lists of drugs to be very cautious about if you have ME/CFS are mostly because of their effects on mast cells (which can be delayed enough to not be obvious), but can also have to do with other common underlying causes as well. Some of us can’t tolerate serotonergic drugs. The reason that you aren’t finding research to support the concern about these meds for ME/CFS is because the connection is to the underlying condition, not to the ME/CFS directly. Anesthesia drugs and other drugs often used around surgery are some of the most likely to be problematic. Propofol was catastrophic for me and a subset of ME/CFSers, while others do great on it. I did well on vancomycin for 10 rounds, but most people with MCAS can’t touch it.
Thank you for being concerned about the mental health and loneliness of ME/CFS patients. This is very true. It doesn’t come from us the patients not prioritizing it doing everything we can to address it- we, like many other chronically ill people, tend to lose our jobs, a lot of our family and friends, and often even our homes. American society tends to blame people who struggle rather than supporting us. People who are supportive are often accused of “enabling us” who “are lazy and just want handouts”. Even when I was placed on hospice I didn’t “look sick” and lost all of my family other than my husband and kids. This is common. Everyone I know of who is very sick with ME/CFS was severely abused throughout their childhood and don’t have family they can rely on. It’s going to take major social change to fix this. The thing is, the loneliness is the result of being sick, not the other way around. Stress was a major factor for me, but not loneliness. I started to improve at a time when the loneliness was at it's worst. Last year I lost all of my family, all but a few friends, and was homeless. The loneliness was absolutely devastating and crushing. Since then I've recovered a lot (still on life support, but I was told I'd be paralyzed if I managed to live this long).
I’ve lost track of how many hospitalizations, surgeries, ER visits, and ambulance rides I’ve had. Three ICU stays and one cardiac ICU stay. Here’s what’s helped- I always go to the same 2 hospitals so they know me pretty well and they’re willing to make exceptions for me for some of the rules. I always get the same surgeon and same group of anesthesiologists, who know me. They always talk with me as much as is needed to get a plan we’re all ok with. My first surgery I did fully awake with only a shot of lidocaine at the initial incision site (and lots of premeds to stabilize mast cells). I actually participated. It sounds awful, but actually I felt the most safe and cared for that way. It was actually a positive experience. What gives me a meaningful sense of connection with those who provide care for me is when they have an open mind, acknowledge what they don’t know, take the severity of my condition seriously, and are willing to be flexible. On my end I value their expertise and experience, always approach them with respect, I also keep an open mind, and always thank them. I also won’t put anyone in a position to do something they aren’t comfortable with. When people have gone up and beyond to find ways of working around my extreme limitations in what my body can tolerate, it’s been healing. I had very severe PTSD before I got sick and being able to collaborate with my care team like this has been really healing.
I’m sorry for how hard it has been on you. A lot of what you have shared is similar to my experience. I grew up in child abuse. Had mono at age 19 from an ex . Worked through it without knowing but became severely fatigued. Exposed to black mold and in a car accident in2009 then diagnosed with fibromyalgia. I felt like I had the flu and could barely get up to go to work. The pain was so bad but I’ve had to push myself through it many times. Cut contact with my family and on my own for 4yrs but I’m getting worse and I don’t know how much longer I can hang on. I work two jobs and want to go back to college to pursue my dream job in the fall but I feel like I’m dying and yet I’m expecting to operate like everyone else if I am to work. I have no one to take care of me if I can’t work anymore and I’m afraid of getting stuck where I currently live for a very long time. I don’t even have an official diagnosis yet other than fibromyalgia but the last 13 months I’ve only slept 3hrs a night due to a bladder problem that a specialist said there was nothing wrong. I grind my teeth and have a stiff neck and I’m still waking up at 1am every night. I now have to wait 3 months to see an RA specialist. I have an immunologist who I met once and still waiting for blood tests to be done.
@@roseflowersmarie3116 I am so sorry that you are dealing with this. What you describe, the events that have contributed to yur condition, sadly are pretty common contributors to ME/CFS and its underlying conditions. I can give you a few ideas here, and then if you'd like I can give you a way to get in contact with me for more specific support. I've been sick for decades and was critically ill for about 10 years (daily fight to stay alive, not hyperbole) so I've learned a lot that can save others a lot of time and trouble. About your bladder- look into Interstitial Cystitis. You may need to try a low oxalate diet if you haven't already. Fibro is usually undiagnosed Ehlers-Danlos Syndrome (hypermobility type). The mono has probably led to chronic HHV-5 activation which affects your nervous system and some of your organs, might respond to a round of anti-virals (meds like Valtrex or natural versions). You will need to pursue diagnosis yourself, don't wait for doctors to figure it out, they won't. To find doctors who are knowledgeable and informed enough to help you join forums online and ask around, especially locally. People in these groups are happy to help. You may need to travel because so few doctors are informed when it comes to any of this or these conditions. Most will give you outdated or just flat-out wrong info or blow you off. There is probably a lot you can do to improve your quality of life. Experienced fellow patients can help you find resources. There are so many options, there are things that are inexpensive, some things you can do on your own, etc. At least do some research into Mast Cell Activation Syndrome, Ehlers-Danlos Syndrome, Autonomic Dysfunction (POTS is a common form in ME/CFSers), and maybe (depending on your symptoms) Cervical Instability (refers to neck, possible given your car accident history) which often goes with Intracranial Hypertension, PANDAS/PANS, Common Variable Immune Deficiency, Eosinophilic GI Disease, Raynaud's Syndrome, and Mitochondrial dysfunction. You may want to have your levels checked of zinc, iron, vitamin D, and see if taking OTC antihistamines helps with anything, especially pain. Healing trauma also seems to be really important, in your mind but also in your body with stretching, yoga, walking outside, relaxation techniques, and doing things that are spiritually meaningful to you. Post a response if you want more help and support. Sending you love and healing
@@roseflowersmarie3116I'm so sorry for all you have & continue to suffer. Just wanted to offer the possibility of Lyme & co -infections as a possible root cause. If you've not heard of Dr Marty Ross, it may be worth looking into.... writing this to you from a place of empathy & compassion for those suffering 🤲
@@justdawndb thank you. I’ve been tested for Lyme several times. I did test positive for active EBV just over a year ago but now barely sleeping due to early menopause. I feel so sick most days dragging myself to work. I don’t know how long I can keep myself going like this.
Doc, doctors today can’t dx cause they don’t have the education and knowledge…. way frustrating. Thanks 💙👊
A diagnosis doesn't change the shitty outcome
Nobody cares about the Loneliness and Social Isolation. My neighbour with Cancer has a better quality of life, waiting to die. Had Covid 3 x now, EBV chronic insomnia, treatment resistant depression & severe arthritis with DDD c-spine and bilateral knees. Have no life at all 😂😂 😢. Wishing you don't wake up daily is standard issue. Hopefully the premature Mortality happens sooner than later.🤙 Guess what? Nobody cares. Your video is nice, at least you get it.
BRAVO! Thank you for the brilliant explanatory presentation of ME/CFS patients (a group to which I have likely belonged to since age 15; I am 54 now). So many people make painful assumptions about us. Thank you for the helpful suggestions and support!
Unbelievable. Your information is so reinforcing. Thank you.
Doctors in my experience would NOT discuss this in any helpful manner.
As someone who is living in a rural setting, with no friends to visit in three years ( I don't even leave my property except for emergencies - everything gets delivered) ... I found this vid to be very educational for Me...
yea, loneliness is BY FAR THE WORSE…and I have anger over those who claim fo care and love me…but literally have done NOTHING to help me. Im greatly neglected. My best friend, who lives 6hrs away, comes to town and will be in town like 1-2 weeks, but IF I WANT to see her, I have to meet her somewhere. She goes on trips but doesn’t ask me cause she knows i need lots of sleep…I don’t fit into peoples lives any more…im so depressed!!!
I too have had a lot of medical trauma and from being dismissed. I was treated like I was part of the problem and that “I was in my own way” from getting well and the reason why I was so debilitated.
The sad thing is I learned to stop asking for help or delay medical attention even when I had a severe neurological decline. I was so afraid to go to the hospital because I thought I would not be believed. It caused me to put myself at risk a lot.
I finally got diagnosed in this past year with significant brain stem, nerve, and spinal cord compression. I had lots of testing over the years but never the right imaging. It’s crazy that I finally found a diagnosis and root that made sense of 14 years of multi-system chaos in my body.
All to say, if all this time I was dismissed and there was concrete reason why I’ve been sick so long, what else is being missed in our medical systems?
Just because there isn’t a concrete test for people with illness like ME/CFS and other autoimmune, inflammatory, or neurological dysfunction doesn’t mean it isn’t real. The root of my illness isn’t going to be the same as the next persons but what we are experiencing is real. It’s
traumatic to loose function, life, opportunities, and community.
Us who live with chronic health are strong, brave, but it’s an awful way to have to live. The isolation and misunderstanding is deafening and we deserve to be seen for the integrity and strength it takes to live in bodies that struggle for basic function.
I have moderate to severe ME of unknown cause, although stress may well have been a factor.
I used to be a busy Community Mental Health Nurse and Team Leader. I would see maybe a hundred people a day between colleagues, patients, friends, random passers by. I went to seeing NOBODY except my husband for weeks at a time. The adjustment was extremely difficult and there was absolutely no help to learn how to cope with the illness and my new life. Sometimes we're described as "invisible" and I think it's true
I felt you were describing me from the beginning. Thank you for the empathy, for making this video. It's hard to feel like this, I am trying to fix it, I hope I succeed. People around me don't help but it's hard to communicate something like this to people around you ... among other difficulties. Anyway, thank you for the video again.
I am a schoolteacher who has worked remotely for a long time. Wow. This is amazing.
I also have ME/CFS for more than 25 years and have suffered as much from rejection and abandonment as the horrible fatigue of the body and brain. I pray for relief. I have a Soldier’s Heart. On top of it I had an abscess on my spine and surgery twice in 18 months to place and replace the rod placed to stabilize my back and now cannot hold my torso up when ambulating. And you are correct in that meth and such do not give me energy. There’s not much left of the “me” I once knew. Marcie Myers
Thank you so much for acknowledging this illness. I was a professional dancer for 12 years, then a Massage Therapist for over 30 years, (someone who loves to use their body and def not lazy). I've been diagnosed with Chronic Lyme, Chronic EBV, Primary Immunodeficiency, ME/CFS, Heart problems, etc. My Dr. can't believe that 300mg of Bupropion and 300mg of Modafinal is not waking me up. I appreciate being acknowledged as a soldier heart because I REALLY want to get better! I appreciate understanding that my body is somehow forgetting how to make ATP, (it used to make so much)! I'm looking for answers if anyone has any. I'm also doing research every day, as I can. Blessings to all that are suffering. For me, cultivating my spiritual life and focusing on our true essence, which I believe is love 💜 has really helped to acknowledge that I am not just my body or illness has really helped, but boy do I want to get up and dance again! Thank you again, Doc, this was a really important one!
My Dr. got mad when I woke up during a colonoscopy in which he had to remove some larger polyps.
I had been talking to the nurse about our dogs before they put me out. She was very kind to me. I’m very lonely ( I was very depressed and a full time caregiver to my mother who was mid stage Alzheimer’s disease. I was exhausted emotionally n physically) and was just loving the conversation we were having before surgery. She had dogs herself n we were sharing stories about our furry friends. When I woke up during surgery I thought I was still in conversation with her about our dogs n started jabbering on on the same subject. The Dr. actually raised his voice saying “YOU’RE AWAKE!” . The look on his face was angry. They put me back out n I had to redo it under a stronger medication. It wasn’t general though. They didn’t have to intubate me for it. I’ll never forget the look of anger on the Dr.’s face.
On another note, my dogs have rescued me. I’m still lonely but they sure make life better. 💝💯💝
I'm laughing so hard cause I to talk about my dog all the time. But that doc was rude. Smh I'm so lots of them are jerks
@@danajacobs9097 , Thank you for replying to my comments.
I do talk about my dogs a lot. Lol 💝
@@TallulahBelle3276 you're welcome. I just love all animals a day my dov especially
Agree 🐕🐕, cats too🐱
Maybe the doctor was taken by surprise and he was angry at the anesthesiologist, not you!
Please don't dwell on it.
The doctor has forgotten about it, I'm sure, and so should you!
Dr. Humanely Wonderful, I am deeply grateful for your aware insights and the well of empathy one needs to possess to reach inside and experience your patients' experience so profoundly. You certainly told my story. Thank you dearly, for seeing us. I feel as if you just gave us all a huge, big, loving HUG. Hugs to you too, Pamela 🥰👍😊💃💝
Thank you for the kind comments! 🙏 I'm sure you are helping others feel less alone and isolated with your comments, too!
I'm so grateful to you for this clip 🙏. So deeply grateful. Will send this clip to my nearest and dearest. Thank you. From a ME patient.
I have ME and every day when someone says “hey! 😀 how are you?” My answer, every day at every hour, is “tired”, “exhausted”, “in pain”, “worn out”.
People’s response: “oh 😳 ok, I’m sorry”.
Me: 😞😢😔🥺🙄 {thinks “great you just pushed ANOTHER person away”.
I just love listening to you. I learn so much. Thank you for all you do for us.
M.S. & Fibromyalgia = loneliness. I was such a social 🦋
A huge thank you for highlighting this issue. I've had this illness for 3 decades. I can't tell you how frustrating to not be able to get on with life. It's incredibly difficult to find any medical help in relieving the symptoms. The all over pain and horrendous exhaustion is incredibly difficult but worse of is being robbed of the ability to think clearly.
Thank you. You just gave me an understanding of what I am going through. Trauma has always been a part of my life due to career choices. I will address this with my doctor. many thanks.
0:40 It's so true. As soon as we feel better we want to be up and doing stuff, so much so that we do too much. And then we pay for it in more pain and exhaustion. It's so prevalent in chronic illness that medical science created Pacing, even telling us it's the most difficult thing to learn, which is how to pace ourselves in activity and rest. We already have to rest so much due to the ups and downs of autoimmune disease, sometimes so severe that light and sound are painful, that we don't want to rest when we feel good enough to be up and about.
And that's only one facet of ME/CFS.
It’s sad to think that this is still considered by some doctors as a possible mental problem. This was address on the Golden Girls in the 80’s… we should KNOW by now that this is a physiological, real illness.
That was such a fantastic episode, inspired by the show's creator, and brilliantly played by the always amazing Bea Arthur. Only decades later did I realize what a treasure it was due so many of us. Thanks for remembering it here, bet the Doc is too young to have seen it, but should, though wouldn't apply to him! ❤️🙏💞
One of my favorite segments of the show. We need to replay that a lot!
Thank you so much for acknowledging those of us suffering with #MECFS💙
This was the best talk on ME CFS I’ve ever watched heard! I got this in 1995 and went from doc to doc to no avail. There is still so much lack of knowledge especially with Doctors. Especially if you have depression and anxiety. Doctors truly need to watch this l’ve suffered for 30 years. You are a very special and unique Doctor. I wish l could see a doctor like you. The video made me feel better today!!! ❤thank you
I am employed in Dental Surgery, hence, why I subscribed to this channel. Yes, I can see how loneliness would destroy your health. Years ago, I was so depressed that I wanted to let go of my very breath and die.
Mrs 8792. Yes. I'm 81, alone 40 years, and know how that feels.
I'm just 45 but I don't want to be here 😢
@@marjoriegarner5369 so sad, I am 63 man and recently divorced and my family doesn't understand this.
@@shellymcguire9963I understand that and often wish I would go to bed and not wake up. We are not alone. Yet governments in the US and Canada pay lip service to this and offer sessions etc, but we know that is not going to work. Only finding someone we can live with or connect deeply with is the answer. I drink most nights to blunt my anxiety and loneliness.
@@shellymcguire9963 I understand, but your life matters. It really does.
At 18 minutes you talk about caregiving for someone in recovery from surgery. I agree that is the number 1 thing we should all be advocating for. I am severely affected with ME. Most people ignore the rehab and long term care systems because they have the privilege to pretend like it has nothing to do with them. But these systems are getting away with all kinds of awful stuff because everyone looks away. By the time it's your turn, you will not like the way they treat you. I have to beg to stay alive. Beg for support. Beg for caregivers. Beg my case managers to show up. While sick. And in Washington they don't put you in a nursing home. Where do you get 'in-home" care if you don't have a home? There are seniors on the street in wheelchairs because they get abandoned. My nervous system can never rest and recuperate and recover under this level of stress about getting my most basic needs met.
I feel your describing me 😢 I have multiple sclerosis, hypothyroidism, Gastoparesis, Raynauds, Epstein Barr Virus, neurogenic bladder, depression, anxiety and Cipro and Levaquin toxicity . I was a Nurse and now disabled and suffer from loneliness 😢
Can't help but won't if you also have an undiagnosed Connective Tissue problem, as well. So many of us have overlapping conditions, and those one thing helps some Docs reframe us better. Also, it must be harder for you on different levels to be held back this way... To be so medically knowledgeable but unable to affect the change you want in yourself, to but be able to help others anymore, and the lack of daily prosocial interaction as well as mental stimulation must be incredibly difficult, Tracey. Do they do any phone nursing or crisis support from home, when able? Just a thought. Very best to you, and thank you for all the love you have your patients, I assure you it wasn't in vain. My father always said that Nurses were the closest thing to angels 😇 On earth! ❤️🙏💞
Do you happen to have hypomobility my mum has severe ms I have fybromyalgia CFS prior decades
Fascinating series. Thank you, doctor.
Oh my gosh! Thank you, thank you, thank you for acknowledging this with so much compassion. I've had this for decades. No doubt my horrendous story is like many others who have ME/CFS.
Thank you for considering ME/CFS patients, there are too few who do.
So much of what you have said in this video describes me so much! I wish i could find a doctor like you in my area! 😢 Thank you for these videos! I have had fatigue and fibro pain since my childhood and everyone has always told me that I'm just lazy and selfish! Keep bringing the awareness and knowledge to the world!❤
I'm so sorry you had that experience, but I greatly admire your vulnerability in sharing that. I hope we can all advocate for individuals like yourself to be recognized more in society to facilitate healing 🙏
Saying people with ME/CFS have kinesiophobia is like saying people with diabetes have gluco-phobia.
According to Wikipedia, kinesiophobia is the fear of pain due to movement. If I move too much, I experience Post-Exertional Malaise, which is the hallmark symptom of ME/CFS, and involves a severe worsening of symptoms, usually with onset 12-48 hours after excessive exertion, that can last weeks, months, or even years. In order to avoid PEM, and to manage all of our other symptoms, it is necessary to strictly pace ourselves. As you pointed out, we have no treatment options.
This pacing is akin to a diabetic who manages their disease through diet and exercise. If a diabetic properly manages their disease (as I did--complete remission for two years), calling them gluco-phobic would be a misnomer. They are simply managing their disease.
Many medical providers inaccurately accuse us if refusing to move because of the inappropriate idea that moving will hurt us. This has created an epidemic of physicians calling for treatments that have been scientifically proven not to work at the very best and to harm us permanently at the very worst. Treatments like Graded Exercise Therapy and Cognitive Behavioral Therapy, which up until very recently were still being pushed at places like the Mayo Clinic, are based on the idea of kinesiophobia.
When I was diabetic, I didn't fear sugar. I managed my contact with it. I have severe ME/CFS, and I don't fear movement or the pain that may be caused by it. I crave movement like a diabetic craves sugar. I just choose to manage it so that I can hang on to what little quality of life I have left.
Hi Dr. Kaveh! Good to see you! This is good! Loneliness can affect your health. Thanks!
As a person who has had severe incidents with anesthesia and drugs I want to thank you for your help.
It is refreshing to know that I having been diagnosed with seizures, streptococcus and severe headaches since I was very young.
And my parents having 9 children placed me in the category of one that didn’t get the care I needed, because my siblings had osteogenetic imperfections and had chronic broken bones. I now realize that I am not crazy or broken I’m LONELY AND AFRAID to deal with my health problems because they were over looked by and never as important to those of my siblings.
You are a wonderful human doing
That is not only willing to point out key indicators of the health problems that people deal with but also to make them aware that they are not stupid or crazy because of their problems.
💚
Thank you for being so dedicated to teaching us how to communicate with our doctors in order to have better health care.
You are a special soul trying to help others.
Thank you for all that you do. Your videos are really nice to listen to, you speak with a lot of empathy and understanding. Multiple times you've improved my (and I'm sure many other people's too) day.
Thank you, and I hope you can keep it up.
I must say you are putting human empathy and care back into medicine! Bravo ....a real human being doing good work for the good of all
Thank you, glad to find this channel, very helpful video much appreciated, acknowledging the big impact of loneliness & lack of support, emotional & practical, & effects of lack of social connection... I've been feeling it.. & I almost instantly cried hearing the questions including 'Who's going to cook a nice nutritious meal?' etc ~at the idea of that, how lovely that would be, & how far away it seems 😢 Grateful to read comments here too, thank you, to feel in good company tho so sad so many others are suffering too ~ I've always felt living in a tribe is more natural & appropriate & healthy for humans.. 🎉🤗🤗🤗❤🙏
I have this. A bunch of other serious stuff too. Thank you for explaining this as something that hits people who work and play hard. I was working out 2 to 2.5hrs every day and in the best shape of my life, while doing a double honors major science degree from the top university in my country(most do one major/one minor but I did 2 majors at the same time and both were honors/advanced), while working full time. I had just graduated and was walking on a hot June day when I collapsed feeling like I had a bad case of sun stroke. 15 years on (took 11 years to be diagnosed)and I've never been the same. Most people don't have it acutely for very long but mine has never improved for more than a few rare hours. I hate looking 'normal' and being unable to do anything I previously could. I can't even shower without help. I had lots of friends, now I have no one - not one single person. Family all think I'm lazy and faking. I frequently wish I'd been run over or shot instead and died at my peak, never knowing how shallow the roots I thought I had were.
Try b complex vitamins and add in additional thiamine . I take 300 mg twice daily . It has helped . Thiamine deficiency is rarely tested for and therefore rarely diagnosed . It’s just a vitamin so can’t overdose on it . I hope this helps
@@DaBongo89 Thank you Allison. Yes I've tried these, I do find B12 makes a huge difference with no hangover effects like from coffee(coffee makes me sick for days). Smoked salmon(B12 and thiamine) does the exact same thing for me. B complex And magnesium helps me sleep at night. None of these things gets me to where I have good energy but if I HAVE to get something done taking them will greatly increase the likelihood I can do it. I've also started omega-3s on the advice of my doctor and but it's too early to tell. Strangely a B complex vitamin upsets my digestion badly so I don't take those. Thank you for the advice.
I've been going through this for 13 years, disabled from it for 3 years. It was triggered by lyme disease that went undiagnosed and untreated for 10 years because of a doctor who told me my debilitating symptoms were all in my head. From just 15 through early twenties I had to find integrative medicine and figure it all out myself, at a time when there was even less out there than there is now. By a lot. Thank you. ❤
I will never, ever be the person I used to be. I miss her so much.
As beiber says never say never though it can feel like that and I know it ps the 18 mark was esp strong but right after that it seems video lost Audio hmmm
Thank you again. I so enjoy learning. I also now have the knowledge I need to make any future surgery go better for everyone.
I really appreciate these videos
A brilliant talk about this nasty isolating disease. Thank you SO much Dr for saying all that you said! 👍🏻👏🏻💐
This doctor is incredible. I've never come across a doctor who has so much understanding of the illness , he is absolutely spot on with everything he says in this video. I was clinically diagnosed with M.E and Fibromyalgia 13 yrs ago now , they can be almost impossible to live with when they are at their worst. I wish he was my doctor. Sufferers being misunderstood by medical professionals, family and friends is a very common problem with this beast of an illness and just adds to our many problems.
But he's saying our problem is kinesiophobia: the fear of moving, which makes this disease psychological. He doesn't understand anything about it at all.
Thank you so much. It is the first time I have heard a doctor express such sympathy and understanding. I am 70 and was diagnosed at age 40. It's been a journey of trying to squeeze out a semblance of a normal life, but depression, IBS, anxiety, loneliness, emotional and social deprivation are the bullies that are constantly threatening me and my will to live. It's painful to think of who I would be and what I could have done given good health. The whole person inside is looking out at life through the window. At times I feel my spirit wants to flee my dull muscles and live without my body.
What a pity that he sound cuts out at 19:32! And the transcript is not in sync with the voice sound, so I couldn't find where it has stopped, in order to read on to the full 28 minutes. The transcript only shows 19 or so minutes. Was very grateful for your message about loneliness. What you say about being gaslit about one's condition, and social loneliness are so good and true. Thank you for being an advocate. Even this helps very much.
It's amazing hearing updates about stuff I last heard about in high school 25 years ago. This was way cool thanks dude
I know there are genetics that can affect me but because the Apnea and non hearing this about ME just about all you described thus far applies to me. Years ago I was quite happy quite actively functioning. But certain more so emotional than physical things have occurred since 2008 that I feel like I’m sinking deeper and deeper as time goes by