Thankyou so much for telling the GPs to stop being so ignorant! i have had ME/CFS now since i was 38, previously fit and well, i am now 56. Im not sure what started mine but i had shingles at 15 severe case, then labyrinthitis at 35, then severe strep throat, so take your pick. I lost my career in ophthalmic healthcare and i lost my social life and many friends. I still have days in bed, it never goes away. I have tried hundreds of Drs, one neurologist i paid private for said i was in a Chronic Migraine state! WTF!! really! i can now work 2 afternoons in a sedentary job, i raised my kids as they were young when i got this, that took all my energy and i did push myself. Thankfully thats not what your meant to do now but i knew no better i got no help and no advice except GET and CBT, i did not do this, i knew my body, exercise was not the way, you just know it, you feel it poison you. I am watching this with baited breath that maybe a treatment will appear for the long covid sufferers that may benefit the ME/CFS community. We have been left and ignored and suffering for decades. i still have hope.
Diane Carubia, your health story sounds like mine. Got chronic recurrent EBV after strep throats at age 40, went from working 10 hour days and raising teenagers, to being bed ridden. After I had COVID-19 in March 2020, Ihad shingles every 10 days repeatedly treated with Valtrex. I was a COVID-19 longer hauler for 14 months. I found the FLCCC.NET alliance through Dr. Been on uTube. None of my Dr.s would Rx. ivermectin for me. I went to the FLCCC Alliance online, was able to get treated with the longhaulers protocol and two months later after five doses of Ivermectin, I am back to my old self again. FYI, after my first dose of Ivermectin I have never had another bout with Shingles, herpes or EVB. I have chronic Lyme disease and my neurological symptoms have improved. Main stream doctors are NO help. I blame Big Medical Mills and Big Pharma for allowing doctors to be hamstrung. I am allergic to all vaccines, this was not a choice for me. Ivermectin saved my life. Contact the Front Line COVID-19 Critical Care Alliance online. Good luck.
Oh I truly understand what you are going through and I think that the first name forc ME/CFS which was CFIDS chronic fatigue immunodeficiency syndrome really described it much better because the immune system is so deficient! We are having such a tough battle with our immune system and many of us have digestive system issues of all types that lead up to our failing immunity. For me I had lived in a older 1940s home that was damaged by fire and was not cleaned up afterwards. It was given to me , my daughter and husband as a gift after we got married. It was the 80's and I didn't hear or know anything about the dangers of black mold and the chemicals that firemen use to put out fires and my elderly Uncle stayed there he was alcoholic and he didn't get the house cleaned up just lived in that mess and after he died I did most of the cleaning in there without any meds and without any gloves scrubbing and cleaning for quite a while. My daughter helped a little and my husband helped clean one room, but the rest was less to me. That led me to develop a severe and serious case of candidiasis as I became so allergic to the mold that was in the house. That led to the breakdown of my digestive system as the yeast colonized my colon leading to it going systemic and getting into my bloodstream due to leaky gut. Immunity begin begins in our colon. If it is not healthy then neither will we be. It was a blessing to get treatment by a nutritional doctor who used to be a mainstream conventional doctor who decided to incorporate nutritional aspects of organic food and supplements along with prescription drugs only when necessary. I researched a lot as well and have learned so much about natural things that are really helpful. You have to get the gut issues cleared up as much as possible before you can start healing. l noticed a huge difference when I began to refine my food intake and use herbs, vitamins and minerals. I hope that you will get better. I have to still deal with the devastation of my body by long Covid now in my older age and it is a battle daily, but I have no doubt that the herbs and good nutrition saved me from dying from Covid. It has been a factor in me developing all sorts of different diagnoses now such as Thyroid disease and the last case Epilepsy . Covid is devastating to life, but I am known to be a fighter! 😊
Very puzzling and I’m discouraged... I’m 40, a woman and had a “mild” case, where I was sick but able to tough through at home and get better. I had all of the classic symptoms for about 2 weeks... I consider myself fairly healthy, exercised regularly, ate pretty well and drink all water outside of a cup of tea/coffee daily, ran 5k’s, did 2 half marathons, never had any illness, or hospitalizations outside of child birth. I’m about 6-7 weeks post covid and the fatigue I experience is unreal.. I’m back exercising but the aftermath of exercising is shortness of breath later in the day, joint and muscle soreness.. my hands feel like I’m 90 with arthritis.. I feel congestion but am never able to cough up anything. I have sharp pains in my chest or back/lungs... I just feel like something is off with me and it’s a bunch of tiny things.. sleeping with a humidifier on helps , but as the day goes on the slight congestion comes back. When I’m feeling better random symptoms will come back and it’s just a constant reminder that I’m not better, it scares me that this one thing may last or alter the rest of my life.
Yes, I have similar symptoms 6 months after Covid-19. I feel I am slowly deteriorating even though I try to keep fit and eat well. I wake up feeling strange pains and anxiety I have never had before. I have no worries about money or living arrangements. I have never felt the breathlessness I experience now. I am planning to use the Wim Hoff method of strengthening my immune system. I take Zinc, Vit D and a couple oranges a day for Vit C.
@@jays6522 Yes, I went through sleeplessness too. I went away for a few days and slept much better at a holiday place. Mind you , I was working very hard doing gardening. The fresh air and real tiredness helped.
@@bleachxxbankai I'm still experiencing shortness of breath when I exercise. Oxygen hunger. It's a horrible feeling drowning. The pains in the chest come and go. Soreness of joints is also a knew experience for me. Otherwise, I think I am gradually improving by taking things easy with exercise.
This is so very sad. I can completely empathize with these people. I have pots syndrome, chronic fatigue syndrome and fibromyalgia. I was a nurse who fell ill three years ago and lost my career and my ability to function in life. At the time I got sick I was healthy and very fit. I have all the symptoms of covid long haulers. All three of these illness run together (Pots, Chronic Fatigue Syndrome, Fibromyalgia). I was diagnosed through Vanderbilt Hospital. Most people with chronic fatigue syndrome also have pots. Pots is part of diagnosing chronic fatigue syndrome in some countries. If you don't have pots, you don't have me/cfs according to their criteria. All of these illnesses can be post viral. I'm finding that it doesn't just trigger from a viral infection, but from a surgery, spine or brain trauma, or even hormone changes. However 75% do come down with chronic fatigue syndrome from something viral. Anything that triggers a cytokine storm or an inflammatory response. For some reason, some of us have immune systems that stay in this response and our autonomic nervous system stays in fight or flight mode causing a malfunction in the nervous system. We exercise and our body takes it as a threat and we become deathly ill days after sweeping our floor. We have pots, dysautonomia and fibromyalgia pain. I do not believe these are separate illnesses. I believe that somewhere in the near future science will find that these three illnesses are linked and come grouped together. People may have more of one but a little of each is present in all.
Tracy Hagler - Hi Tracy! I agree with you that these may all be part of a single Syndrome, with a myriad of symptoms. Have you come across Dan Neuffer’s ANS Rewire Program: ansrewire.com/ and the “CFS Unravelled” TH-cam Channel: th-cam.com/users/CFSUnravelled1 ? He believes it results from inflammation of the Brain, causing dysfunction of the Autonomic Nervous System, and has had some success with treatment. I don’t have any affiliation with this program, but I’m interested in your opinion of it. It appears that it could be helpful.
Tracy Hagler - Agreed 100%, I have been sick for 24 years following Epstein Barr virus and have been bedridden for the last 7 after giving birth to my twins. More women than men get me/cfs/fibromyalgia as well. This is a sacrifice for the long haulers but in a way, a blessing for all of us who have suffered with this for YEARS. Governments are forced to study me/cfs now.
Sounds like me since march. Tracy you are not alone and sound educated in the topic. These doctors dont know what to do our it's truly a money grab and they are keeping it hush hush. Take care
When nothing seems to work change everything. Move to a different climate and eat different food, keep a diary of these changes. Include a 10 day water fast and come back with one food at a time. Deep relax, hot baths and beautiful surrounds. Massages, floating. Chanting, perfumes etc.
35 male and this has been me since march. Coworker h as d the same and coded twice. Luckily hes alive and feeling well. I am yet to feel myself again. Lots of pain fatigue and cognitive problems. When will this nightmare end!
Same here, it sucks. I have not been able to go back to work and have to write to them every week to let them know about my symptoms. I’m so sorry this happened to you too.
It’s been over half a year and the best we can get in these interviews is a series of “we don’t know” responses... Don’t get me wrong I’m glad Dr. Putrino is on our side, but it’s extremely frustrating that even the few experts who are taking us seriously still have no fucking clue what is going on or how to help long haulers.
I know exactly what one large subgroup is... ME/CFS as it mimics identically a large proportion of the people who are usually those at the longest stage after their initial Covid infection. ME/CFS also has neurological symptoms, vision, cognitive issues, pain , flu like symptoms, aphasia, headaches, extreme fatigue, extreme weakness, orthostatic intolerance, palpitations, hot and cold flushes, and most importantly Post Exertional Malaise (PEM). if you don't have PEM you don't have ME/CFS If you do have PEM its also likely the still in the precursor illness stage of ME/CFS 'Post Viral fatigue Syndrome' I know this because I've had both and I study the illness. I also read plenty of research of SARS 2002-2003 patients (many of them are still unwell). exercise Note: This 'delay' of no change, then a sudden worsening, doesn't happen in other diseases. as with them the malaise it usually immediate onset. So you have this unusual phenomenon, you need to tell yourself to only do just enough not to medically decondition, but not do too much to trigger that worsening. Because its actually an immune response to something being released by cells during exertion, from their metabolism, perhaps a normally harmless protein that is now being mistakingly misidentified and attacked by the immune system. (called 'molecular mimicry' ) Other researchers think its a receptor being targeted. A recent second study found antibodies in some patients targeting the adrenergic receptor, and another receptor for acetyl-Choline Dr. Nancy Klimas from the Neuro- Immune Institute discovered massive gene expression in ME/CFS patients who mildly exercise. The Adrenergic system, the Immune system and interestingly the sensory system gene expression became highly active after exercise. This did not happen to controls. www.healthrising.org/blog/2018/10/10/cdc-roundtable-multisite-klimas-reset-chronic-fatigue-syndrome/ Another Researcher Robert Naviuax famous for his work of Autism and ME/CFS. He found the cells of both patient groups go into a low energy state called the 'Cell Danger Response' chronicillnesstraumastudies.com/cell-danger-response-disease/ Care providers need to first eliminate the usual suspects, long scaring, check oxygen saturation levels, both seated and again after a 40 step walk. Check for organ damage, Check heart issues, clotting etc before the ME/CFS diagnosis. But you need to be aware that if you recommend exercise, please check your patient isn't worsening 24-48 hours after they've been to physio, as they may have lung scaring AND ME/CFS. Thats something many doctors are over looking, especially when recommending exercise.
B Robinson I agree that a significant proportion of Covid long-haulers may develop ME/CFS, since we have seen this happen in the aftermath of other viral infections including SARS. However I don’t think all long-haulers fall under that category, for example I am a long-hauler but I have never experienced significant fatigue-my most prominent symptoms have been dizziness and a skin rash, although these have dramatically improved in the last couple months.
Bernie O'Connor yes I agree. This means doctors are in for a lot of careful sorting of who ended up with what. I can imagine there will be misdiagnosis especially between people with lung damage and ME/CFS as both have shortness of breath and fatigue dizziness etc. that worries me. I hope doctors are thorough in examining patients. Worse a patient could have both conditions, meaning exercising with ME/CFS will worsen them. They’ll be exercising for their lungs but that will be ‘pushing through’ beyond what an ME/CFS sufferer can handle. What’s needed is a diagnostic test for ME/CFS which actually already exists except there’s be no government funding for it. It’s called the nano-needle and so far hasn’t had a false negative or false positive. Designed by Stanford School of Medicine’s Professor Ron Davis. I only hope this test gets fast tracked into mass production to quickly identify the subgroup who actually have developed ME/CFS med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html
B Robinson Yep and it’s going to be a disaster, because a lot of these patients are going to require a level of individualized care that only someone like Celine Dion would normally have access to. It doesn’t help that the major subgroups that we expect to find in post-Covid patients-particularly ME/CFS, POTS, and MCAS which Dr. Putrino mentions-are all to various degrees poorly understood diagnoses, which most GP’s are either unfamiliar with, vaguely familiar with but uncomfortable diagnosing, or outright deny their existence. It’s even worse that these conditions are frequently co-morbid, and furthermore their treatment protocols are often polar opposites-for example graded exercise therapy has been found to be quite effective in treating POTS, while for ME/CFS it is at best useless and for many it may actually make them worse. And when we consider that we are looking at hundreds of thousands or potentially millions of post-Covid patients, each of whom is going to require a highly extensive and individualized medical examination and treatment... there isn’t a single healthcare system in the world that can provide that much care to so many people.
Here's a video where an organized study of the blood work of many long-haulers is discussed, along with their current thoughts about what's going on. th-cam.com/video/rcbBF69FEY4/w-d-xo.html
got covid at work ill,severe headache,fever chills,tested positive for covid,slept for 7 days went back to work and collapsed severe breathless,rapid heart,not seriously enough to be hospitalised,4 months later,muscle wastage,joint and muscle pain,cognitive issues,chronic fatigue,low thyroid and sudden onset high blood sugar,never before been ill.
@@daboulsol9567 no. I have had skin rashes, panic attacks, sharp pain that radiants from shoulder blade to chest, migraines, numbness,tingling, burning skin. Rapid increase in blood pressure hear and their. Light headedness and the liust goes on.
@@mjenks85 wow that’s everything I’ve been experiencing I don’t even know what to do I’ve been to doctors so many times and no one can explain wth is wrong with me rn I can’t breathe and feel lightheaded and weak smh I hope u get better if you find anything that helps plz lmk
It's now the 23rd of October 2020 as I type this. The number of long haulers is increasing dramatically. Mostly because the early sufferers back in March 2020 were not monitored or aware of the serious situation they were in. In many cases they were turned away from hospitals and not tested. They rode out the problems at home and didn't report their condition until the media made a big deal of what was happening. Then when they were tested nothing showed up but their experience matched what was happening and being reported later as Covid-19.
I still do not feel well. People do not understand unless it happens to them. I still suffer and have not been able to go back to work. I stay at home and rest as recommended, but I still struggle with symptoms and pain. It is so scary.
@@demolaj1 I have gone to the emergency rooms and they claim it’s anxiety and say it’s in my head, very dismissive. Then called Mayo Clinic and the neurologists won’t treat me because it has not been 90 days since I got it. However, I do have many lingering symptoms such as brain fog that I absolutely struggle with. Thank you for the response!
It’s been over a year of symptoms for me. September 29th 2019. A sick Chinese cruise worker came into the salon. By the end of the day I was in the hospital and quarantined for over a month due to the “mystery” virus they couldn’t figure out. FYI cruises get new workers every week and this was that person’s first. She literally came straight from China with what she kept saying was just a cold.
Had a rather ‘minor’ COVID case, still having debilitating fatigue going on 1 year now. I’m just becoming aware of this long hauler syndrome and glad that I think I at least have an answer.
This was so great to discover and listen to. I have suffered and survived from 3 cases of COVID. I was extremely ill and I never went to the hospital and just stayed home and I toughed it out and fought through it with herbs that provides protection for the lungs, good nourishing foods and having a str strong faith helped greatly in support of the stress of those times. I live in a small city where the healthcare is way behind. Many doctors and specialists are just not available here and I have found that none of my doctors even at the hospitals know anything about long Covid. I am on my own with severe illness remaining. I was listening to the podcast intensely and I will be sharing it with family and friends. Thank you for this I didn't want it to end. I would love to hear more like this and keep learning about long Covid.
I have been hearing many people (largely women) on media complaining of persistent fatigue and other symptoms mentioned and at the same time talked about running marathons, being triathletes, running 10 miles/day, are fitness influencers, etc. I do contact tracing and talked with two women with those complaints, both with BMIs of around 20; I don't recall hearing the persistent symptoms from any others. Is anyone investigating the association between excessive exercise and these complaints? When I worked in HIV/AIDS prevention I learned that physical activity is beneficial to the immune system up to a point, then diminishes with an increase in exercise. Could this make someone more vulnerable to longer-term damage? I would not want to discourage exercise, but there is such a thing as too much of a good thing. I feel for these individuals. This has got to be terribly frustrating and impactful on their quality of life.
i wasn't huge into fitness prior to contracting the virus, but no major health problems (fibromyalgia, Sjogrens syndrome) and im on day 200 of illness.
@@ericaallnutt7997 There are likely other factors related to long-term effects of the virus that also merit study. I just know I keep hearing the complaints from people who participate in vigorous exercise activity. (I am a major proponent of exercise, so I don't want to disparage anyone participating in any level of exercise/fitness work.) This is simply observation on my part in the absence of study results. I hope someone does look into this and other factors so that possible treatment/prevention strategies can be developed, if called for.
I think there is a truth to this. I came down with pots, me/cfs and fibromyalgia three years ago. What I think is many of us thought we were healthy our whole life. We were type A go getters whose nervous system may be wired high anyway. We are the type that cant sit down, work overtime, live life, exercise and activity. We take on the world and then a trigger comes, a viral infection, a surgery, a hormone change, spine or brain trauma and our autonomic nervous system responds inaccurately along with our immune system. A cytokine storm takes place and an inflammatory response happens and our bodies stay stuck in that state. Inflammation invades our brains and bodies our immune system thinks any exertion or activity is a threat making us feel deathly ill after trying exercise. The autonomic nervous system basically does everything that's automatic. Breathing heart rate, blood pressure. urinary, etc. We then experience pots syndrome or dysautonomia because of the malfunction. It affects all body systems. They are going to one day find out that dysautonomia (pots), chronic fatigue syndrome and fibromyalgia are not separate illnesses they all go together. Often times with sjogren’s syndrome. Some people may have symptoms that are more prominent of one than the other. But these are too often manifested together for them not to be linked.
I have had slowed brain function and extreme fatigue for almost a year now . I have four children and I can’t even get myself to properly care for them most days . I don’t want to live constantly tired and constantly feeling dumb and slow . My kids don’t deserve to have a parent who can only be psychologically and emotionally and physically present half of the time . The quality of my life , has been impacted so badly that it’s not worth fighting to stay COVID free , at this point it truly feels like getting the virus and dying from it is far better than the lasting effects it has on your life afterwards.
I became sick in March. I had 11 symptoms except the fever. Hence they didn't test me. But I have confusion at times, along with the heart palpitations, and tremors, and dizziness. What can my doctor do for me?
Tanya Forbes unfortunately not much, if anything. If you want to make sure you had COVID, you can ask your doctor to check your antibodies before they go back down.
But I am ok with where I am going. This year has been debilitating. But, I still will finish this thing with my eyes focused on the things above. That's the only thing that brings me true peace. Hang in there, I will pray for you.
Check if the virus impaired their hormone levels (because of the age group and these are females). The symptoms you say they report are also symptoms of loss of estrogen due to menopause
I have tired eyes from being on the net too long. When I go for walks I find looking sideways and then back to where I'm headed is disorientating. I have never had this before. I guess it could be another result of being on the net too much. I also suffer dry eyes. I am told to drink more straight water. Tension in my body carries over from day to day. Again, probably the net viewing. That is evident even now as I type these words. My shoulders are up and my breathing is shallow. Net sickness extends to gaining weight due to lack of movement. I eat less but it hasn't helped. I have been following the medical issues for months. I wonder if I am hypnotizing myself into more problems. Anxiety over the future is a day by day experience now.
Would this age group have more to lose, compared to the more elderly? Many elderly are already complaining of cognitive symptoms and loss of stamina, so they cannot abruptly develop such sequence after COVID-19.
My 11 year old daughter was an honor roll student prior to having COVID and now after COVID she produced a report card will all F and one D . I am so terrified of what might become of her in the future.
@@niniram7571 I am not a doctor but it is a desease of inflammation try mixture of pineapple ginger tumeric and black pepper in a drink or tea twice a day recipes can be found on Pinterest. This will help to reduce the inflammatory response in the body and also give vitamin D and zinc to help build back the immune system All these things are natural so there should be no adverse response
You will find a lot of these symptoms are caused from the heavy duty antibiotics given at the hospital. You will no longer be able to process food like you did, so your body will start to feed on itself. Therefore you will loose mussel and weight. This is serious and will take a very long time to recover. You will be short of breath because your lungs are still full of muck. You will cough up muck for years, not just months. You will also start to sleep very very deeply because your body needs to heal. So deeply that you cannot wake up during the night, so plan on pissing the bed a few times. Brain fog will make you forget simple words when you talk with your friends. It will make you feel like a different person then you used to be. It will also last a very long time.
@@manindermanku8667 Thank You, I still have most symptoms, the swollen legs and stiff joints (ankles mainly), along with the feeling of internal organs being swollen, appear to be getting worse. There are some symptoms that might be attributed to being bedridden most of the time.............. I have just started getting help from a NHS Long Covid Clinic so let’s see if this process helps..............
@@manindermanku8667 I am up to about 30 different symptoms in all................ did you want me to list them? Chronic Fatigue is the most predominant and debilitating!! Happy to talk about it, if it’s going to help others!
Women are working too much inside and outside home;may be it's a message slow down the pace and delegate more tasks. We have to take care of ourselve no body will
Thankyou so much for telling the GPs to stop being so ignorant! i have had ME/CFS now since i was 38, previously fit and well, i am now 56. Im not sure what started mine but i had shingles at 15 severe case, then labyrinthitis at 35, then severe strep throat, so take your pick. I lost my career in ophthalmic healthcare and i lost my social life and many friends. I still have days in bed, it never goes away. I have tried hundreds of Drs, one neurologist i paid private for said i was in a Chronic Migraine state! WTF!! really! i can now work 2 afternoons in a sedentary job, i raised my kids as they were young when i got this, that took all my energy and i did push myself. Thankfully thats not what your meant to do now but i knew no better i got no help and no advice except GET and CBT, i did not do this, i knew my body, exercise was not the way, you just know it, you feel it poison you. I am watching this with baited breath that maybe a treatment will appear for the long covid sufferers that may benefit the ME/CFS community. We have been left and ignored and suffering for decades. i still have hope.
Diane Carubia, your health story sounds like mine. Got chronic recurrent EBV after strep throats at age 40, went from working 10 hour days and raising teenagers, to being bed ridden. After I had COVID-19 in March 2020, Ihad shingles every 10 days repeatedly treated with Valtrex. I was a COVID-19 longer hauler for 14 months. I found the FLCCC.NET alliance through Dr. Been on uTube. None of my Dr.s would Rx. ivermectin for me. I went to the FLCCC Alliance online, was able to get treated with the longhaulers protocol and two months later after five doses of Ivermectin, I am back to my old self again. FYI, after my first dose of Ivermectin I have never had another bout with Shingles, herpes or EVB. I have chronic Lyme disease and my neurological symptoms have improved. Main stream doctors are NO help. I blame Big Medical Mills and Big Pharma for allowing doctors to be hamstrung. I am allergic to all vaccines, this was not a choice for me. Ivermectin saved my life. Contact the Front Line COVID-19 Critical Care Alliance online. Good luck.
Oh I truly understand what you are going through and I think that the first name forc ME/CFS which was CFIDS chronic fatigue immunodeficiency syndrome really described it much better because the immune system is so deficient! We are having such a tough battle with our immune system and many of us have digestive system issues of all types that lead up to our failing immunity. For me I had lived in a older 1940s home that was damaged by fire and was not cleaned up afterwards. It was given to me , my daughter and husband as a gift after we got married. It was the 80's and I didn't hear or know anything about the dangers of black mold and the chemicals that firemen use to put out fires and my elderly Uncle stayed there he was alcoholic and he didn't get the house cleaned up just lived in that mess and after he died I did most of the cleaning in there without any meds and without any gloves scrubbing and cleaning for quite a while. My daughter helped a little and my husband helped clean one room, but the rest was less to me.
That led me to develop a severe and serious case of candidiasis as I became so allergic to the mold that was in the house. That led to the breakdown of my digestive system as the yeast colonized my colon leading to it going systemic and getting into my bloodstream due to leaky gut. Immunity begin begins in our colon. If it is not healthy then neither will we be. It was a blessing to get treatment by a nutritional doctor who used to be a mainstream conventional doctor who decided to incorporate nutritional aspects of organic food and supplements along with prescription drugs only when necessary. I researched a lot as well and have learned so much about natural things that are really helpful. You have to get the gut issues cleared up as much as possible before you can start healing. l noticed a huge difference when I began to refine my food intake and use herbs, vitamins and minerals. I hope that you will get better. I have to still deal with the devastation of my body by long Covid now in my older age and it is a battle daily, but I have no doubt that the herbs and good nutrition saved me from dying from Covid. It has been a factor in me developing all sorts of different diagnoses now such as Thyroid disease and the last case Epilepsy . Covid is devastating to life, but I am known to be a fighter! 😊
Very puzzling and I’m discouraged... I’m 40, a woman and had a “mild” case, where I was sick but able to tough through at home and get better. I had all of the classic symptoms for about 2 weeks... I consider myself fairly healthy, exercised regularly, ate pretty well and drink all water outside of a cup of tea/coffee daily, ran 5k’s, did 2 half marathons, never had any illness, or hospitalizations outside of child birth. I’m about 6-7 weeks post covid and the fatigue I experience is unreal.. I’m back exercising but the aftermath of exercising is shortness of breath later in the day, joint and muscle soreness.. my hands feel like I’m 90 with arthritis.. I feel congestion but am never able to cough up anything. I have sharp pains in my chest or back/lungs... I just feel like something is off with me and it’s a bunch of tiny things.. sleeping with a humidifier on helps , but as the day goes on the slight congestion comes back. When I’m feeling better random symptoms will come back and it’s just a constant reminder that I’m not better, it scares me that this one thing may last or alter the rest of my life.
Yes, I have similar symptoms 6 months after Covid-19. I feel I am slowly deteriorating even though I try to keep fit and eat well. I wake up feeling strange pains and anxiety I have never had before. I have no worries about money or living arrangements. I have never felt the breathlessness I experience now. I am planning to use the Wim Hoff method of strengthening my immune system. I take Zinc, Vit D and a couple oranges a day for Vit C.
@@medicalinterest9091 I am 3 months out and have similar diagnosis. Sleeplessness is horrific too.
@@jays6522 Yes, I went through sleeplessness too. I went away for a few days and slept much better at a holiday place. Mind you , I was working very hard doing gardening. The fresh air and real tiredness helped.
Hey how did y’all feel now??
@@bleachxxbankai I'm still experiencing shortness of breath when I exercise. Oxygen hunger. It's a horrible feeling drowning. The pains in the chest come and go. Soreness of joints is also a knew experience for me. Otherwise, I think I am gradually improving by taking things easy with exercise.
This is so very sad. I can completely empathize with these people. I have pots syndrome, chronic fatigue syndrome and fibromyalgia. I was a nurse who fell ill three years ago and lost my career and my ability to function in life. At the time I got sick I was healthy and very fit. I have all the symptoms of covid long haulers. All three of these illness run together (Pots, Chronic Fatigue Syndrome, Fibromyalgia). I was diagnosed through Vanderbilt Hospital. Most people with chronic fatigue syndrome also have pots. Pots is part of diagnosing chronic fatigue syndrome in some countries. If you don't have pots, you don't have me/cfs according to their criteria. All of these illnesses can be post viral. I'm finding that it doesn't just trigger from a viral infection, but from a surgery, spine or brain trauma, or even hormone changes. However 75% do come down with chronic fatigue syndrome from something viral. Anything that triggers a cytokine storm or an inflammatory response. For some reason, some of us have immune systems that stay in this response and our autonomic nervous system stays in fight or flight mode causing a malfunction in the nervous system. We exercise and our body takes it as a threat and we become deathly ill days after sweeping our floor. We have pots, dysautonomia and fibromyalgia pain. I do not believe these are separate illnesses. I believe that somewhere in the near future science will find that these three illnesses are linked and come grouped together. People may have more of one but a little of each is present in all.
Tracy Hagler - Hi Tracy! I agree with you that these may all be part of a single Syndrome, with a myriad of symptoms.
Have you come across Dan Neuffer’s ANS Rewire Program: ansrewire.com/ and the “CFS Unravelled” TH-cam Channel: th-cam.com/users/CFSUnravelled1 ? He believes it results from inflammation of the Brain, causing dysfunction of the Autonomic Nervous System, and has had some success with treatment. I don’t have any affiliation with this program, but I’m interested in your opinion of it. It appears that it could be helpful.
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Tracy Hagler - Agreed 100%, I have been sick for 24 years following Epstein Barr virus and have been bedridden for the last 7 after giving birth to my twins. More women than men get me/cfs/fibromyalgia as well. This is a sacrifice for the long haulers but in a way, a blessing for all of us who have suffered with this for YEARS. Governments are forced to study me/cfs now.
Sounds like me since march. Tracy you are not alone and sound educated in the topic. These doctors dont know what to do our it's truly a money grab and they are keeping it hush hush. Take care
When nothing seems to work change everything. Move to a different climate and eat different food, keep a diary of these changes. Include a 10 day water fast and come back with one food at a time. Deep relax, hot baths and beautiful surrounds. Massages, floating. Chanting, perfumes etc.
35 male and this has been me since march. Coworker h as d the same and coded twice. Luckily hes alive and feeling well. I am yet to feel myself again. Lots of pain fatigue and cognitive problems. When will this nightmare end!
Same here, it sucks. I have not been able to go back to work and have to write to them every week to let them know about my symptoms. I’m so sorry this happened to you too.
It’s been over half a year and the best we can get in these interviews is a series of “we don’t know” responses... Don’t get me wrong I’m glad Dr. Putrino is on our side, but it’s extremely frustrating that even the few experts who are taking us seriously still have no fucking clue what is going on or how to help long haulers.
I know exactly what one large subgroup is... ME/CFS as it mimics identically a large proportion of the people who are usually those at the longest stage after their initial Covid infection. ME/CFS also has neurological symptoms, vision, cognitive issues, pain , flu like symptoms, aphasia, headaches, extreme fatigue, extreme weakness, orthostatic intolerance, palpitations, hot and cold flushes, and most importantly Post Exertional Malaise (PEM). if you don't have PEM you don't have ME/CFS
If you do have PEM its also likely the still in the precursor illness stage of ME/CFS 'Post Viral fatigue Syndrome' I know this because I've had both and I study the illness. I also read plenty of research of SARS 2002-2003 patients (many of them are still unwell).
exercise
Note: This 'delay' of no change, then a sudden worsening, doesn't happen in other diseases. as with them the malaise it usually immediate onset.
So you have this unusual phenomenon, you need to tell yourself to only do just enough not to medically decondition, but not do too much to trigger that worsening. Because its actually an immune response to something being released by cells during exertion, from their metabolism, perhaps a normally harmless protein that is now being mistakingly misidentified and attacked by the immune system. (called 'molecular mimicry' ) Other researchers think its a receptor being targeted. A recent second study found antibodies in some patients targeting the adrenergic receptor, and another receptor for acetyl-Choline
Dr. Nancy Klimas from the Neuro- Immune Institute discovered massive gene expression in ME/CFS patients who mildly exercise. The Adrenergic system, the Immune system and interestingly the sensory system gene expression became highly active after exercise. This did not happen to controls.
www.healthrising.org/blog/2018/10/10/cdc-roundtable-multisite-klimas-reset-chronic-fatigue-syndrome/
Another Researcher Robert Naviuax famous for his work of Autism and ME/CFS. He found the cells of both patient groups go into a low energy state called the 'Cell Danger Response'
chronicillnesstraumastudies.com/cell-danger-response-disease/
Care providers need to first eliminate the usual suspects, long scaring, check oxygen saturation levels, both seated and again after a 40 step walk. Check for organ damage, Check heart issues, clotting etc before the ME/CFS diagnosis. But you need to be aware that if you recommend exercise, please check your patient isn't worsening 24-48 hours after they've been to physio, as they may have lung scaring AND ME/CFS. Thats something many doctors are over looking, especially when recommending exercise.
B Robinson I agree that a significant proportion of Covid long-haulers may develop ME/CFS, since we have seen this happen in the aftermath of other viral infections including SARS. However I don’t think all long-haulers fall under that category, for example I am a long-hauler but I have never experienced significant fatigue-my most prominent symptoms have been dizziness and a skin rash, although these have dramatically improved in the last couple months.
Bernie O'Connor yes I agree. This means doctors are in for a lot of careful sorting of who ended up with what. I can imagine there will be misdiagnosis especially between people with lung damage and ME/CFS as both have shortness of breath and fatigue dizziness etc. that worries me. I hope doctors are thorough in examining patients. Worse a patient could have both conditions, meaning exercising with ME/CFS will worsen them. They’ll be exercising for their lungs but that will be ‘pushing through’ beyond what an ME/CFS sufferer can handle. What’s needed is a diagnostic test for ME/CFS which actually already exists except there’s be no government funding for it.
It’s called the nano-needle and so far hasn’t had a false negative or false positive. Designed by Stanford School of Medicine’s Professor Ron Davis. I only hope this test gets fast tracked into mass production to quickly identify the subgroup who actually have developed ME/CFS
med.stanford.edu/news/all-news/2019/04/biomarker-for-chronic-fatigue-syndrome-identified.html
B Robinson Yep and it’s going to be a disaster, because a lot of these patients are going to require a level of individualized care that only someone like Celine Dion would normally have access to. It doesn’t help that the major subgroups that we expect to find in post-Covid patients-particularly ME/CFS, POTS, and MCAS which Dr. Putrino mentions-are all to various degrees poorly understood diagnoses, which most GP’s are either unfamiliar with, vaguely familiar with but uncomfortable diagnosing, or outright deny their existence. It’s even worse that these conditions are frequently co-morbid, and furthermore their treatment protocols are often polar opposites-for example graded exercise therapy has been found to be quite effective in treating POTS, while for ME/CFS it is at best useless and for many it may actually make them worse. And when we consider that we are looking at hundreds of thousands or potentially millions of post-Covid patients, each of whom is going to require a highly extensive and individualized medical examination and treatment... there isn’t a single healthcare system in the world that can provide that much care to so many people.
Here's a video where an organized study of the blood work of many long-haulers is discussed, along with their current thoughts about what's going on.
th-cam.com/video/rcbBF69FEY4/w-d-xo.html
got covid at work ill,severe headache,fever chills,tested positive for covid,slept for 7 days went back to work and collapsed severe breathless,rapid heart,not seriously enough to be hospitalised,4 months later,muscle wastage,joint and muscle pain,cognitive issues,chronic fatigue,low thyroid and sudden onset high blood sugar,never before been ill.
Thank you for this video. It has been 6.5 months for me and I still am not back to what I was.
Same here. Constantly fatigued
Today I had kidney pain, blurry vision in right eye, and chest pain and this has been going on since march. Crazy stuff
@@mjenks85 same mine I thought it was anxiety it started n March and never stoped is these the only symptoms u get?
@@daboulsol9567 no. I have had skin rashes, panic attacks, sharp pain that radiants from shoulder blade to chest, migraines, numbness,tingling, burning skin. Rapid increase in blood pressure hear and their. Light headedness and the liust goes on.
@@mjenks85 wow that’s everything I’ve been experiencing I don’t even know what to do I’ve been to doctors so many times and no one can explain wth is wrong with me rn I can’t breathe and feel lightheaded and weak smh I hope u get better if you find anything that helps plz lmk
It's now the 23rd of October 2020 as I type this. The number of long haulers is increasing dramatically. Mostly because the early sufferers back in March 2020 were not monitored or aware of the serious situation they were in. In many cases they were turned away from hospitals and not tested. They rode out the problems at home and didn't report their condition until the media made a big deal of what was happening. Then when they were tested nothing showed up but their experience matched what was happening and being reported later as Covid-19.
Agree
I still do not feel well. People do not understand unless it happens to them. I still suffer and have not been able to go back to work. I stay at home and rest as recommended, but I still struggle with symptoms and pain. It is so scary.
How long has this been going on .. thnx any meds or supps help at all ?
@@demolaj1 I have gone to the emergency rooms and they claim it’s anxiety and say it’s in my head, very dismissive. Then called Mayo Clinic and the neurologists won’t treat me because it has not been 90 days since I got it. However, I do have many lingering symptoms such as brain fog that I absolutely struggle with. Thank you for the response!
It’s been over a year of symptoms for me. September 29th 2019. A sick Chinese cruise worker came into the salon. By the end of the day I was in the hospital and quarantined for over a month due to the “mystery” virus they couldn’t figure out. FYI cruises get new workers every week and this was that person’s first. She literally came straight from China with what she kept saying was just a cold.
Had a rather ‘minor’ COVID case, still having debilitating fatigue going on 1 year now. I’m just becoming aware of this long hauler syndrome and glad that I think I at least have an answer.
This was so great to discover and listen to. I have suffered and survived from 3 cases of COVID. I was extremely ill and I never went to the hospital and just stayed home and I toughed it out and fought through it with herbs that provides protection for the lungs, good nourishing foods and having a str strong faith helped greatly in support of the stress of those times. I live in a small city where the healthcare is way behind. Many doctors and specialists are just not available here and I have found that none of my doctors even at the hospitals know anything about long Covid. I am on my own with severe illness remaining. I was listening to the podcast intensely and I will be sharing it with family and friends. Thank you for this I didn't want it to end. I would love to hear more like this and keep learning about long Covid.
I have been hearing many people (largely women) on media complaining of persistent fatigue and other symptoms mentioned and at the same time talked about running marathons, being triathletes, running 10 miles/day, are fitness influencers, etc. I do contact tracing and talked with two women with those complaints, both with BMIs of around 20; I don't recall hearing the persistent symptoms from any others. Is anyone investigating the association between excessive exercise and these complaints? When I worked in HIV/AIDS prevention I learned that physical activity is beneficial to the immune system up to a point, then diminishes with an increase in exercise. Could this make someone more vulnerable to longer-term damage? I would not want to discourage exercise, but there is such a thing as too much of a good thing.
I feel for these individuals. This has got to be terribly frustrating and impactful on their quality of life.
i wasn't huge into fitness prior to contracting the virus, but no major health problems (fibromyalgia, Sjogrens syndrome) and im on day 200 of illness.
@@ericaallnutt7997 There are likely other factors related to long-term effects of the virus that also merit study. I just know I keep hearing the complaints from people who participate in vigorous exercise activity. (I am a major proponent of exercise, so I don't want to disparage anyone participating in any level of exercise/fitness work.) This is simply observation on my part in the absence of study results. I hope someone does look into this and other factors so that possible treatment/prevention strategies can be developed, if called for.
Kim Batchelor you really need to do more research.
Imelda Fagin Imelda, I don’t understand your point. I’m calling for research to be done if it is not already being done.
I think there is a truth to this. I came down with pots, me/cfs and fibromyalgia three years ago. What I think is many of us thought we were healthy our whole life. We were type A go getters whose nervous system may be wired high anyway. We are the type that cant sit down, work overtime, live life, exercise and activity. We take on the world and then a trigger comes, a viral infection, a surgery, a hormone change, spine or brain trauma and our autonomic nervous system responds inaccurately along with our immune system. A cytokine storm takes place and an inflammatory response happens and our bodies stay stuck in that state. Inflammation invades our brains and bodies our immune system thinks any exertion or activity is a threat making us feel deathly ill after trying exercise. The autonomic nervous system basically does everything that's automatic. Breathing heart rate, blood pressure. urinary, etc. We then experience pots syndrome or dysautonomia because of the malfunction. It affects all body systems. They are going to one day find out that dysautonomia (pots), chronic fatigue syndrome and fibromyalgia are not separate illnesses they all go together. Often times with sjogren’s syndrome. Some people may have symptoms that are more prominent of one than the other. But these are too often manifested together for them not to be linked.
I have had slowed brain function and extreme fatigue for almost a year now . I have four children and I can’t even get myself to properly care for them most days . I don’t want to live constantly tired and constantly feeling dumb and slow . My kids don’t deserve to have a parent who can only be psychologically and emotionally and physically present half of the time . The quality of my life , has been impacted so badly that it’s not worth fighting to stay COVID free , at this point it truly feels like getting the virus and dying from it is far better than the lasting effects it has on your life afterwards.
I wonder if there is a different T cell response in these long hauler patients?
YES. Take additional supplemental zinc for that.
I was a long hauler for 3 months. I feel 95% better, but I do believe this has taken a decade or more off my life.
What symptoms u had pls
Michael smith what symptoms did you feel
What were your symptoms?
@@alexlee8639 the only symptom I didn't have was nausea.
@@michaelsmith5583what did you have
I became sick in March. I had 11 symptoms except the fever. Hence they didn't test me. But I have confusion at times, along with the heart palpitations, and tremors, and dizziness. What can my doctor do for me?
Tanya Forbes unfortunately not much, if anything. If you want to make sure you had COVID, you can ask your doctor to check your antibodies before they go back down.
Same hear! I know have vision lose and kidney pain.
It's a little scary, I admit it, but it looks to me like I too in time will become a victim to this disease.
I just had a stroke Dec 20.
But I am ok with where I am going.
This year has been debilitating.
But, I still will finish this thing with my eyes focused on the things above.
That's the only thing that brings me true peace.
Hang in there, I will pray for you.
Check if the virus impaired their hormone levels (because of the age group and these are females). The symptoms you say they report are also symptoms of loss of estrogen due to menopause
Do you know of anyone who has had estrogen therapy that resolved these symptoms?
Yes my hormones are so thrown off it made my cycle irregular and I’ve never had an irregular cycle my entire life !
anyone haveing kidney pain and loss of vision?
I have tired eyes from being on the net too long.
When I go for walks I find looking sideways and then back to where I'm headed is disorientating. I have never had this before.
I guess it could be another result of being on the net too much.
I also suffer dry eyes. I am told to drink more straight water. Tension in my body carries over from day to day. Again, probably the net viewing.
That is evident even now as I type these words. My shoulders are up and my breathing is shallow.
Net sickness extends to gaining weight due to lack of movement. I eat less but it hasn't helped.
I have been following the medical issues for months. I wonder if I am hypnotizing myself into more problems. Anxiety over the future is a day by day experience now.
I have cool feeling on my left side, I have been to doctors and they told me I had acid reflex
10 months after covid. I'm always burning up and exhausted. Dont feel like myself
Would this age group have more to lose, compared to the more elderly? Many elderly are already complaining of cognitive symptoms and loss of stamina, so they cannot abruptly develop such sequence after COVID-19.
Only adults are being considered in my country some of the children who recover have educational deficits brain fog
My 11 year old daughter was an honor roll student prior to having COVID and now after COVID she produced a report card will all F and one D . I am so terrified of what might become of her in the future.
@@niniram7571 I am not a doctor but it is a desease of inflammation try mixture of pineapple ginger tumeric and black pepper in a drink or tea twice a day recipes can be found on Pinterest. This will help to reduce the inflammatory response in the body and also give vitamin D and zinc to help build back the immune system All these things are natural so there should be no adverse response
You will find a lot of these symptoms are caused from the heavy duty antibiotics given at the hospital. You will no longer be able to process food like you did, so your body will start to feed on itself. Therefore you will loose mussel and weight. This is serious and will take a very long time to recover. You will be short of breath because your lungs are still full of muck. You will cough up muck for years, not just months. You will also start to sleep very very deeply because your body needs to heal. So deeply that you cannot wake up during the night, so plan on pissing the bed a few times. Brain fog will make you forget simple words when you talk with your friends. It will make you feel like a different person then you used to be. It will also last a very long time.
Long haulers now have me/cfs
What's that?
Proof? It is suspected though.
Since May here. Thanks for the info!
I had Covid in January and still have full symptoms..................
It is a nightmare. 😢
What symptoms are you still having please tell us
@@manindermanku8667 Thank You, I still have most symptoms, the swollen legs and stiff joints (ankles mainly), along with the feeling of internal organs being swollen, appear to be getting worse. There are some symptoms that might be attributed to being bedridden most of the time.............. I have just started getting help from a NHS Long Covid Clinic so let’s see if this process helps..............
@@manindermanku8667 I am up to about 30 different symptoms in all................ did you want me to list them? Chronic Fatigue is the most predominant and debilitating!! Happy to talk about it, if it’s going to help others!
@@nevsart5884 did they find out anything long Covid clinic. Are you in uk
Women are working too much inside and outside home;may be it's a message slow down the pace and delegate more tasks. We have to take care of ourselve no body will