Long COVID, Post Viral Fatigue Syndrome and ME/CFS

Nearly 1 in 7 people with COVID-19 have symptoms lasting 3 months or longer. Over a million people are thought to have Long COVID in the UK [1]. These people are often young, previously healthy, and had relatively mild symptoms at onset [2]. Long COVID covers a large and diverse group of patients in terms of clinical presentation, severity, fluctuation, and causal factors [3]. Research suggests Long COVID may be up to four different syndromes which some patients might be experiencing simultaneously [4].
“If you look anecdotally there is no question that there are a considerable number of individuals who have a post-viral syndrome” [5]. Research that monitored people over time found that many people with Post Viral Fatigue Syndrome recover within a year of the initial infection [6].
In a small minority of cases patients can go on to develop ME/CFS, a complex multi system disease often triggered by a virus or infection [7]. Preliminary research into Long COVID suggests there are many overlaps with ME/CFS [8]. A significant number of people with Long COVID could meet the diagnostic criteria for ME/CFS [9].
The hallmark symptom of ME/CFS is that even minimal exertion can cause a flare in symptoms and a reduction in physical capability (a crash) that can last for days, weeks or even months. In a large survey of Long COVID patients a high proportion reported that they experience Post Exertional Malaise and suffered relapses after activity [10].
It is vital that researchers and clinicians who treat and study Long COVID patients understand ME/CFS diagnostic criteria and management advice [11]. For over 20 years ME/CFS patients have been recommended Graded Exercise Therapy a controversial treatment where physical activity is gradually increased over time. Patient surveys consistently report that Graded Exercise Therapy makes over 50% of patients with ME/CFS worse. Some never recover [12]. After an extensive 3 year review, NICE dropped Graded Exercise Therapy from their draft guidelines for ME/CFS because of improved standards for evidence and concerns about harm [13].
A growing number of patients with Long COVID are experiencing adverse effects from exercise therapy [14]. Physiotherapy that might work for one group of Long COVID patients may end up worsening another. The challenge is to identify those who experience Post Exertional Malaise and avoid worsening the condition [15].
To help manage their energy and avoid Post Exertional Maliase patients should practice Symptom Contingent Pacing because activities are driven by symptoms and are not fixed or gradually increased [16]. Both physical and mental activities should be carried out in small manageable chunks with a period of rest or relaxation in between. Approaches that utilize wearable heart rate monitors may also be effective [16].
Note
Read about my story and a disclaimer in the about section of this channel.
References
[1] www.ons.gov.uk...
[2] www.theguardia...
[3] meassociation....
[4] www.bmj.com/co...
[5] meassociation....
[6] www.ncbi.nlm.n...
[7] • Post Viral Fatigue (PV... (8 mins 50)
[8] www.mdpi.com/1...
[9] www.medscape.c...
[10] www.medrxiv.or...
[11] www.meaction.n...
[12] meassociation....
[13] www.nice.org.u...
[14] www.jospt.org/...
[15] www.csp.org.uk...
[16] www.physiosfor...
Resources
Information & Management
meassociation....
Pacing
www.physiosfor...
Online CPD Module on ME/CFS for healthcare professionals
www.studyprn.c...
Credits
www.emerge.org.au
solvecfs.org
www.me-cvsvere...
superpooped.blo...

[@miagn5967]

I have ME for 18 years. I was mild, now I’m severe. I’m post-pacing. Please emphasize that pacing can become redundant for severe and very severe patients. Thank you for all that you do

[@dianemetcalf5204]

My husband cured his long hauler symptom after 1o weeks, Dr Drew recommended for my husband to take Fluvoxamine (he was prescribed 100mg twice a day for 2 weeks). IT WORKED! within 30 minutes of the 1st dose he was completely cured. Dr. Drew said it somehow resets your brains/immune system. His long hauler symptoms were Fatigue, ears ringing, headache, body aches, brain fog etc. flu like symptoms. This is also how Dr. Drew got rid of his loan hauler symptoms, its hard to find on the internet probably bcuz they are censuring it. pass it on

[@ANUPSINGH-it8jj]

Go mf 😡😡

[@lizzy66125]

yes I am severe to very sevrre ,pacing is no longer possible😢

[@dianecarubia1099]

Every GP and mediacl professional should watch this. I know a GP and nurse personally who have no idea what ME/CFS is. how can this be in 2021?????

[@vkhan5431]

I know of several GPs and "specialists" who claim it doesn't even exist in 2021. Gastroenterologists, Internists, Endocrinologists, Rheumatologists, Pediatricians... And all this despite the info being freely available on the CDC website, W.H.O. ICD classification etc.

[@dianemetcalf5204]

My husband cured his long hauler symptom after 1o weeks, Dr Drew recommended for my husband to take Fluvoxamine (he was prescribed 100mg twice a day for 2 weeks). IT WORKED! within 30 minutes of the 1st dose he was completely cured. Dr. Drew said it somehow resets your brains/immune system. His long hauler symptoms were Fatigue, ears ringing, headache, body aches, brain fog etc. flu like symptoms. This is also how Dr. Drew got rid of his loan hauler symptoms, its hard to find on the internet probably bcuz they are censuring it. pass it on

[@riselle1]

Exactly!!! How can these medical staff not know about post covid symptoms?

[@capatheist]

@@riselle1easily… it only just happened and was lies through out. We don’t know about it yet… Me/cfs on the other hand… I’m very bothered by this attempt to equate the two, when we don’t even know what causes me/cfs yet….

[@svenlundergard1]

​@@capatheist I mean no disrespect but..if anyone is any type of .physician, wouldn't we expect that they are keeping abreast of all of the information that is out there during and after a pandemic ???? Do you mean to say that doctors don't even watch the nightly news? Long Covid information has been talked about for several years now. Shame on doctors who don't keep up with the latest information regarding a friggin pandemic. Really...

[@jwsuicides8095]

Bottom line is: don't listen to wankers, listen to your own body. Your body will tell you what it needs.

[@karmakarl6673]

I've had CFS for 17 years but the past 18 months has been the worst and most relentless fatigue I have ever experienced. I have been close to suicide on many occasions. Every day is a mountain to climb and I find myself housebound and extremely limited. I got Covid quite early on in the pandemic and have been on my knees ever since. I'm working with Functional Medicine and Chinese Herbs but it seems a long road just to get me back to moderate fatigue which was where I was at prior to Feb 2020. I'm so grateful that I get all the PIP I am entitled to. That allows me to invest in my health. I spend currently £500 a month on health care! Zero help from the NHS!!!

[@BrokenBattery]

So sorry to hear this. I hope you see some improvement soon.

[@dianemetcalf5204]

My husband cured his long hauler symptom after 1o weeks, Dr Drew recommended for my husband to take Fluvoxamine (he was prescribed 100mg twice a day for 2 weeks). IT WORKED! within 30 minutes of the 1st dose he was completely cured. Dr. Drew said it somehow resets your brains/immune system. His long hauler symptoms were Fatigue, ears ringing, headache, body aches, brain fog etc. flu like symptoms. This is also how Dr. Drew got rid of his loan hauler symptoms, its hard to find on the internet probably bcuz they are censuring it. pass it on

[@isaacjmay]

@@dianemetcalf5204 super interesting, how long did he take it for?

[@isaacjmay]

Definitely stack up on NAC, it helps your body fight in almost every-way. Also if you've never tried it you take the methyl folate, methyl b-12 stack.

[@beckyzeller8068]

@@dianemetcalf5204 THANK YOU FOR THIS INFO..are u better..covid pneumonia since Jan 3..Dr gives no meds except I got iv antibodies, taking tons of vitamins and supplements..SOB and exhaustion unreal..Dr says I am a long hauler..take care friend

[@queenaranel6060]

All I want is my life back. I tire so easily. Just taking out the trash and I'm exhausted and out of breath. I'm so depressed that now I'm seeing a psychiatrist to help me cope with this covid-19 PTSD "So sad" I got covid - 19 July 19, 2021 and still suffering from it.. 😪 By the way I'm 69 years old and I was very active but not any more.. 😪

[@beckyzeller8068]

O Queen this breaks my heart for u..covid pneumonia here also, 59, got sick Jan 3..I m so EXHAUSTED and so SOB..making a meal tires me for hours..I had 13 symptoms..I m like stuck in the middle..not worse just waiting to feel better..I do not like this new norm..I suffer from depression also..I hear ya friend..hang in there and take care😊

[@isaacjmay]

I got CFS after a bad reaction to Cipro and subsequent viral infection. I forced myself to go to the gym 4 times a week even though it killed me, I also did hyperbaric oxygen therapy and many other things but thankfully i did get better... and got into the best physical aesthetic shape of my life. it was a long hard road though and I still to this day (9 years later) don't remember what it even feels like to have abounding energy. But it keeps my lifestyle healthy because if i stray at all i pay for it. When i finally got COVID a couple months ago, I felt horrible for weeks and thought i might end up with long haul but i stayed on antihistamines for a month and took tons of NAC, vit. C, vit. D, etc. and thankfully i am almost back to normal.

[@jameswohley3332]

What symptoms do you have after recovering from Covid?

[@docjnsn73a]

I also thought I had ME/CFS and was actually diagnosed by one of the few specialists in the country. Long story short what I actually was suffering from was Fluoroquinolone Toxicity. If you had a reaction to Cipro (which is a Fluoroquinolone antibiotic) its quite possible you had the same.

[@kathygreen6043]

Exactly. I got a viral infection and never recovered. One year later still fighting. It is devastating. First thing went was my legs, then arms then brain. All on fire every day. Up one day, crash two or three. Horrible, cruel disease. I pray it will leave quickly. Shocking and unbelievable.

[@Ex-expat]

5y with diagnosed ME. Exercise is the worst advice ever. Pacing slowly and hold to 50% of your capability will slowly, very slowly increase your capabilities. I went from running to wheelchair and can now slowly walk 1km and that's an achievement! So pace yourself and set the right expectations on yourself.

[@ex8280]

Your not the only one who says exercise is the worst advice. I wonder why that is?

[@brida5923]

I have had ME CFS after a car accident stress and a virus all within a short time span. I had a head and neck injury. Back in 2002 they said it was psychological. And while I have my issues, this was neurological and made me desperate for relief from the unrefreshing sleep, pain, brain fog, other myriad symptoms. But mostly I just wanted to feel less alone.

[@maritascoonbee8285]

Thank you for this comment - I too started to suffer from CFS after a serious concussion when I was 13 years old, I am now 55 - brain fog, coordination, balance, speech and as I m getting older, more severe bouts of flu that lasts for months on end.

[@randallhesse5011]

@@maritascoonbee8285 have you looked into methylene blue? Maybe even D-Ribose, glutathione, cats claw, berberine, Huperzine-A, and so on.

[@damienb6184]

It’s astounding. The number of drs and specialists who’ve psychologized me and told me to move more are as long as my arm. In early 2023 I was cross country skiing at least twice a week. Multiple walks for at least 20 minutes each week. Now I can’t walk my block without flaring. I’m struggling with my stairs at home. I’m becoming more and more bedridden. And I still get told to increase activity. NIH keeps wasting funding on cbt/GET like studies, and repeating the same mistakes. It seems intentional at this point.

[@ericvanschie]

As An Q-fever patiënt, I do regognize a lot in this video. Good warning for a lot of patiënts.

[@TheUnknown-yx8zc]

July 16 2021 is when my life completely changed. I was supposed to compete in a Brazilian jiu-jitsu tournament the next day but woke up with some nausea and felt very fatigued. I had no idea what was wrong with me. I thought I just had a stomach bug. After a week I did recover but something wasn’t right. I felt off all the time. My eyes became sensitive to sunlight and as I continued to train in bjj I felt more and more fatigued. I began to lose energy to workout and I lost my muscle and became thinner. I couldn’t think properly and my head felt cloudy all the time as if I was hungover. This is known as brain fog and was my worst debilitating and frustrating symptom. I had to quit bjj in october 5th 2021 because I physically couldn’t do it anymore. I barely passed my classes last fall because my memory went to shit. I Started doing tons of research on what's wrong with me. I went to several doctors appointments and saw a neurologist as well as had several blood work tests done on me. My father, who is a very intelligent ER physician, did not know what was wrong with me. I found after hours of intensive research that I had chronic fatigue syndrome(aka post viral syndrome). I was devastated. There was no medical cure for cfs and my life was just getting worse. I was going downhill fast and I knew that if I didn’t fix my health, then I would be bed bound. At one point I was suicidal. But I knew that would be selfish as I have a mother, father and sister who love me very much and would be devastated if I killed myself. That's when I decided that no matter what I couldn’t give up and I wasn’t going to live like this either. I accepted the fact that no doctor was going to fix me and the only person that was going to save me was myself. That was my first I did hours and hours of research on how to improve my health. I cut out all artificial sugars from my diet. I mainly stuck to meat, veggies, and fruit. I read books such as Joe Dispenza “Breaking the Habit of Being Yourself” and watched his videos. Joe Dipenza was paralyzed from the waist down and learned the ability to walk again through meditation. I thought, if this man can recover from a spinal cord injury and use his mind to walk again, I could do the same to heal my body. I did hours of meditation as well as did a brain retraining program called the gupta program. I prayed to God. I took cold showers. I also took supplements such as coq10. I blocked any negative influence on my life. I also did no fap/semen retention. As I got better I continued to increase my physical intensity when it came to working out. I started off as small as 50 pushups doing multiple physical exercises. My life began looking up again. I started being able to do more things. I gradually gained my memory back. I went back to school. I documented my progress on how I was doing each month. Today I am fully recovered. I am back to what I was before I got sick. I train multiple times a week in bjj. I am in great shape. I am finishing my last year of college. I just received my blue belt in bjj. To anyone out there who thinks it is impossible to recover from this, don’t give up. Your mind and heart are powerful tools. Use them. Don’t waste your life going to doctors and waiting for the medical system to find you a cure. I was fortunate enough to realize after the first three months of being ill that doctors weren’t going to save me. That realization is why I am here today writing this. If you put your mind to it, you can accomplish anything. Some sources/videos I used to recover are cfs recovery, health recovery, harry boby long covid recovery, and joe dispenza-all found on youtube. I also prayed to god asking him for advice and I also did the gupta brain retraining program

[@smenretention2421]

Gonna take this and really get after it. I'm only 15 years old, trying to continue my baseball career and graduate high school, go to college etc. Pray for me

[@TheUnknown-yx8zc]

@@smenretention2421 good luck. How did you get cfs?

[@smenretention2421]

@@TheUnknown-yx8zc I had the a really bad Flu, and a week after I recovered I started experiencing symptoms that never went away. I should also mention I was extremely stressed during that whole time period, not sure if that could trigger it

[@TheUnknown-yx8zc]

@@smenretention2421 how long have u had this

[@smenretention2421]

@@TheUnknown-yx8zc 4 months

[@hellowp1345]

Thanks for this video. I love Dr. Chia in this. So simple but yet so many doctors do not get it right. 3:58

[@irmakalember9403]

I just recovering from Covid-19. I also have fibromyalgia and I have noticed. I am much slower and I still do not have my smell/taste back. It’s terrible virus that our gov made it up to infect and kill us. Covid-19 is terrible.

[@beckyzeller8068]

Irma..covid pneumonia since Jan 3..fibro here also..this fatigue like ON Steroids times 10 lol..short of breath..cannot taste all I want is a good cup of ☕ ☕..hope u r better friend

[@brobinson8614]

One of the best ME/CFS video on KZbin

[@BrokenBattery]

Thanks 👍

[@maximillioncharles]

Thank you - this was very helpful for me as I am trying to understand why I am feeling so badly. I have Long Covid with many symptoms. I can hardly function at any level. At least now U I can explain to doctors and other people who are concerned about my health. More important now I am know this is not just something in with no explanation

[@watcher2534]

Do you have cough and cold, runny nose and feeling feverish?

[@annaradcliffe7022]

Brilliant short video explaining how to manage LongCovid!

[@BrokenBattery]

Thanks Anna

[@jamiesdawn]

I just got diagnosed with this, and my husband works out of town. he has been gone a month and a half, and I've been taking care of our 2 children, 3 and 6 it take everything I have to do what I'm doing the minimum! So sad 😞

[@cathycivy3258]

❣ Sharing and raising awareness! ❣

[@cathycoppin5682]

Finally get it we can’t exercise make’s use worse. Thank you for what your doing now x

[@elainefree4873]

I’ve had it since 1979. It has been variable but I have had very low energy and post exertional malaise. My husband does everything but my personal care. I am going through a terrible phase just now - after COVID and 2 years of mental anguish.

[@JohnBonOneBonneville]

Lots of love ❤️ thank you so much 🤗

[@Anotherhumanexisting]

As soon as “long covid” showed up in the news, I knew it was just the same post viral fatigue ME/CFS that I’ve had since 2015. Exact same set of symptoms since I had mono/EBV (untreated, pushed myself too much) at 17 years old. Now at 26 years old I still can’t even go to the grocery store without feeling completely exhausted the next day. Can’t hold even a part time job without burning out, rarely see friends or leave home, don’t have the energy to date anyone. This is even after incorporating holistic medicine, vitamins/mineral supplements, spoon theory, etc. Doctors have nothing to offer because all the tests come back normal. I feel like I’m as good as dead. It’s no life to have…

[@mr.invisible926]

Thank you for making this.

[@calila650]

Make sure you are getting lots of potassium it’s vital for your muscles to function and to not get fatigued

[@XibeastmasteriX]

Im 23 and have been dealing with this since January after gettint COVID in september. Never been suicidal my whole life but I dont think I’ll allow myself to live another year if Im like this. Fucked up disease :(

[@BrokenBattery]

So sorry to hear that. Hang in there if it's anything like other post viral illnesses most people seem to improve over time and many recover in the first 12 to 24 months. Plenty of rest is essential for the best prognosis.

[@Lena.9]

I got ME when I was 24, and after the first 6 months of illness I thought I would jump for a train if I didn’t get better in a year or so. Its already 7 years later now, and there are still many (small) things that are worth living for. Allow yourself to grieve for what is lost. But there is also hope, covid will probably speed up research for these type of illnesses.

[@masoudhashemi5792]

I'm on the same boat

[@MissCBwasadancer3]

I’m 23 next month, had this for 10 years, been bedbound for 5. I’ve been lucky to have people around me that care & understand family wise as many doctors don’t. Please don’t kill yourself. We can fight together 💪🏼 you are never alone. Please contact a charity/ professional or fellow chronically ill (as you have done so here) if you are feeling suicidal. It may not feel like it, but there’s more to life than what you’re feeling.

[@22Harponyo]

Hang in there. It will get better with time...

[@frcfun8328]

Very well done! 🙏

[@Ex-expat]

Anyone with ME, get a parking disability permit! That way you can increase your mobility the good days.

[@cathycoppin5682]

I had it for 18 years too Due think there was leak years ago that we weren’t talke or know about

[@awilliams7266]

👏💙💙💙

[@masoudhashemi5792]

What are the symptoms of post viral fatigue pls someone reply

[@BrokenBattery]

This video explains the differences between PVF, PVFS and ME/CFS in more detail including symptoms kzbin.info/www/bejne/haqpf4mXrrCMeck

[@dianemetcalf5204]

My husband cured his long hauler symptom after 1o weeks, Dr Drew recommended for my husband to take Fluvoxamine (he was prescribed 100mg twice a day for 2 weeks). IT WORKED! within 30 minutes of the 1st dose he was completely cured. Dr. Drew said it somehow resets your brains/immune system. His long hauler symptoms were Fatigue, ears ringing, headache, body aches, brain fog etc. flu like symptoms. This is also how Dr. Drew got rid of his loan hauler symptoms, its hard to find on the internet probably bcuz they are censuring it. This drug has been around for a very long time...pass it on

[@svenlundergard1]

@masoudhashemi5792- MY symptoms for post viral fatigue are: chronic and severe headaches fatigue sensitivity to heat, which bring on feelings of a terrible hangover like weakness, headache, shaking, nausea sensitivity to loud noises, as they bring on feelings of weakness and elevated heart rate that takes a while to slow down Pain in neck and shoulder areas that comes and goes sensitivity to artificial fragrances (which are everywhere these days) brings on all symptoms but mostly headache stress brought on by ANYTHING including JOY. Scary movies, mental "work" like anything I have to concentrate for poor sleep The thing that is frustrating for us and doctors, is that so many of us have similar symptoms but MANY of us have completely different ones. My friend has this condition and she can't stand the cold/is fine with heat, and loud noises and sleeps really well. Another person has brain fog where they feel like they can't think normally, like their head is in a cloud. Frustrating for everyone,. I hope that helps a little. if you think you have this and are in the early stages of this condition, REST REST REST and try everything you can to reduce stress. I am convinced that a high level of stress and pushing myself through in the early days has made my condition much worse.

[@Kpleaides]

Extreme fatigue whereby you can no longer do daily functions Can't work anymore If you do spend an entire week in bed Sore throat Aching cells Panic attacks and anxiety due to loss ability of being able to function It's horrific

[@masoudhashemi5792]

@@Kpleaides I have all these symptoms u mentioned after catching covid 3 years ago

[@ItsMichaelBernal]

Try ivermectin

[@jane_7777]

How long u took ivermectin for your post long covid?

[@teddybearroosevelt1847]

@@jane_7777 I would recommend you take it indefinitely if you want to avoid long haulers syndrome