The Guardian needs to do more coverage of disability and what is being done to these groups who have no representation and have been shut out of society. Many say that how they are treated is worse than their disabilities. The situation is scandalous and dangerous and the government are gearing up to make things even worse.
@theGuardian Thanks. It's late in the day. The gov are responsible for many deaths and for ruining countless lives. This has been ignored because people think of disabled people as a separate category of human, ignoring that our rights are the bedrock of theirs. Systemic ableism is so entrenched that people don't perceived it. Ableism is root of F ism and thus needs to be understood and addressed.
Seconded. This is a pressing universal concern across the globe as corporate capitalist culture embraces regressive ideologies intent on negating all difference; meanwhile our leaders act as if this polarization is inevitable and refuse to acknowledge that, in this culture, marginalization is a sure path to annihilation. Who needs the trains to run on time when you can save so much more money and boost your profits by letting things completely fall apart?
So sad to watch Darren's story. I developed a post-viral syndrome from a dengue infection in July last year and the absolute carnage it wreaks on your mental health is really difficult to comprehend if you haven't had a long-term illness. Almost overnight you have to accept that your life as you knew it is over. Darren, if you read these comments know that you are doing an amazing job and I'm sure your kids are very proud of you. Stay strong and keep going - you can recover.
I have been chronically ill and disabled since a Covid reinfection in May 2022. Lost everything, wouldn't recommend. Please avoid reinfections, it is not worth it. And I fell ill as a completely healthy 20-something year old.
@@williezar2231 thank you for your question! The doctors unfortunately know very little. I have the ME/CFS and dysautonomia version of Long Covid. There is very little support available as there has been a lack of biomedical research into these conditions. I did have my initial vaccinations but due to my age I was not eligible for boosters. However, unfortunately vaccinations do not fully stop transmission or the development of Long Covid. Great for stopping deaths and ICU admissions, but not the development of post-covid chronic illness.
@@revivedfears apologies for the confusion. Unfortunately many folks think Covid is "just a cold" and do not adopt simple mitigation strategies such as masking during surges or good ventilation. I put the blame on the lack of government messaging around the dangers of covid reinfections. By "not worth it," I mean it's not worth it rolling the dice whether this covid infection will spark a chronic condition. Maybe you were fine the first 4 times, but the 5th time cripples you. I guess I am saying just because you were fine with some covid infections, it doesn't mean you will be with future ones.
I have ME/CFS. I find it upsetting an infuriating that ME/CFS research, healthcare policy etc could have been a strong starting point for understanding and treating long covid. However, due to me/cfs being so underfunded, and stigmatised this was not the case. I worry that people with long covid worsen due to being recommended the same recycled therapies like grades exercise therapy (or something similar) when ME/CFS patients have known for decades that this is harmful for us and finally after a lot of campaigning the research that 'evidenced' this has been proven to have been bad science and research with (amongst other things) the parameters for recovery being changed to make it seem more effective (PACE trial). The only upside here is that organisations aree joining forces and some knew to research from day 1 as it was obvious something like this would happen.
I had Covid almost exactly two years ago. I felt really ill for about a week, like serious flu. I quickly recovered, but soon noticed that I was sleeping 9 hours per night instead of my previous 7. Also, I no longer felt like going for walks - I had previously walked most days, often 10-12 miles. Next, I started feeling nasty aches, starting at my hips & moving down my legs. Until Covid, I had enjoyed excellent health and felt much younger than my age (now 74). Over the last 2 years, these symptoms have come & gone almost at random. The overall trend is towards feeling better, but very slowly and with numerous setbacks.
Same here. I was so active before I got sick waking up at five -6 AM jumping in the shower getting ready for my day now there’s days that my body feels so heavy I can barely walk . extreme fatigue no matter what I do, and the brain fog is so bad to the point that I feel so disconnected from reality
Well done for highlighting this situation that’s still affecting thousands of us. It is particularly difficult as it’s not specifically diagnosed/understood and to look at a lot of sufferers seem OK at first glance. Keep focussed on what you can do and all the best for the future.
I was diagnosed at 23 after more than 2 years of misdiagnosed .... in absence of anything else they said it was due to sars cov2 thanks to a brain Pet scan with typical disfunction in 3 specific regions allying haulers have. This is sars cov 2 !!!!!!!!!!
I was infected in September of 2022. The acute infection hit me pretty hard. About a month and a half after my initial infection, I still wasn't feeling fully better. I was sleeping a lot more, finding that sleep was never fully restorative; and I was having trouble thinking. I tried returning to workouts, but found that just a single workout of even moderate intensity would wipe me out for almost a week. (I was a gymnast for 13 years, then did track for a couple years, then returned to calisthenics and hand-balancing. Just before infection, I was working out 4 times a week on average.) I didn't understand this illness, and was trying to treat recovery like any other viral illness I'd experienced in the past. That is, I was just trying to push past the malaise. I decided to become quite physically involved in the UC graduate student strike that took place in November that year, doing many hours of picketing each day for about two weeks. It was grueling -- hot, sunny, and my symptoms were getting worse and worse. Heart palpitations, racing heart, pain in my chest, difficulty breathing, intense fatigue and brain fog. I didn't know what was going on. So I just kept on going, until the pain in my chest was to intense to brush aside. In December, I was diagnosed with long-COVID. Fast-forward 1.5 years to May 2024, and I was diagnosed with POTS and CFS. (Although, I consider myself one of the lucky ones, as many folks have to wait upwards of 5 years or even more to obtain such diagnoses.) It's been over two years since the initial infection, and I'm still suffering greatly from it. My greatly reduced capacity for exertion is of course quite annoying, as is the PEM. But what pains me the most is the brain fog. I was (am?) a graduate student, and my mind's integrity was absolutely central to the life I was building for myself. It can be really hard to explain what brain fog feels like. It's certainly uncomfortable, if not actually painful. It feels somewhat like the cognitive impairment of a hangover. For me, word recall is compromised. My short-term and long-term memory are both compromised. My executive function is compromised. My capacity to run through and understand arguments is compromised. My capacity to express my thoughts clearly is compromised. All of these I need for my work. The best metaphor I can come up with for how brain fog feels and affects me is the following. Trying to think is akin to struggling to walk through mud. The deeper the mud is (the worse your brain fog is), the slower your walk (think), and the more you have to push and exert yourself in order to get to the other side (complete the cognitive task at hand). Even when the mud is quite shallow, it still slows you down. It is still harder to get to your destination. But these days, I'm happy if the mud is shallow, rather than deep. One final thing I'll say: long-covid, like many other chronic illnesses, is invisible in several senses. In addition to the sense that Darren mentions in the video -- namely, that we're invisible because we're largely housebound, thus never seen by the healthy public -- long-covid is invisible in the further sense that to someone who doesn't know anything about chronic illnesses, I might look perfectly "healthy."
Sorry to hear of your difficulties. There are so many similarities reported by people with Long Covid. Hopefully better understanding of this condition will come.
Was it COVID? Or the Vaccine? I seem to see that it's only the vaccinated that claim to suffer from Long Covid...sorry if that's the case one way or the other. Look into Chlorine Dioxide.
I am still on lockdown because public health won’t acknowledge I am high risk. Long Covid has been impossibly difficult. I can’t keep doing this. Thank you for this coverage. May there be more.
Thanks for your comment, and sorry to hear you've been so badly affected. Hope your situation improves and that the necessary attention arrives for this condition
Please keep sharing and highlighting this. All thoughts with Darren and others. I caught something in may 2023, the worst flu like symptoms ive ever had, probably covid but didnt test at the time. Havent been quite the same since. I got a bit better that summer and started attempting 'normal' activities again (for me, this was 15 mile+ hilly walks, long cycles, working full time, regular trips, social life and activity). After one cycle in autumn 2023, this triggered post extertional malaise like ive never know, unable to think, move for weeks at a time, brain fog, aches. Struggled through working for next six months or so, with increasing absences in a stressful environment (with other external stuff going on too). Eventually all got too much and was finally signed off in May 2024, which saw slow and steady improvement via cold water immersion, yoga nidra, breathing exercises. Nowhwre near 100% yet (can mostly potter around and do day to day things now but not returned to my pre infection activities, still breathless on slopes and upstairs, achey and brain fog, but have recently returned to work on a phased return. GP said they openly didnt understand it. Went through all these relevant tests, xrays, echo scans etc, all clear. Six sessions of long covid physio were great, supportive but mostly holistical. No treatment of course. A referral to the excellent ENO Breathe course was brilliant too, would recommend that if people can access it. (Wasnt made aware of it til very late on in the long Covid clinic). Support has been very fragmented. Work and HR have been difficult and made things worse, due to a lack of understanding. Ive found Jackie Baxter's Long Covid podcast very useful too. All the best everyone.
@@helenpauls1496 Don't think people realise how quickly this is changing. The social safety net is being dismantled. People ignored what is being done to disabled people and do not care.
I am having the same issues and my Doctor believes I have Long Covid. I have never felt like this before and I am looking into retiring because I can't do my job anymore.
What a terrible shame, but as you said Darren, invisible, it's so important that you made this film to help us understand your reality, and that of so many others. Thank you, blessings
We all need to pay attention to how sick, elderly and disabled people are treated. Their rights are YOUR rights. A 2016 UN report found the UK government had committed 'grave and systemic violations of disabled people's human rights.' the situation is now worse. This is playing a key part in many of the destructive things that are happening in this country.
I am dealing with this right now, despite being very cautious with my health - hygiene, nutrition, distancing, masking, etc. I am immunocompromised, I was affected as a dependent by the Camp Lejeune toxic water contamination that has killed and sickened hundreds of thousands of people over decades. This has absolutely devastated every aspect of my life - emotional, financial, relationships, and of course my ability to be the once athletic, active person I was. For those who are housebound, and severely disabled - we are indeed invisible and mostly ignored by society at large.
This makes me so sad. I recently had Covid (end of November 2024) and to me, it felt like a flu. It wasn't a bad flu though, just your typical shivering, feeling hot, sweating. I also had a very sore throat and a bit of a cold. I had 3 Covid jabs (all Pfizer, not sure if relevant) and of course after all these years the virus has been mutating so much that I got a watered down version of it. But knowing how many people died is heart breaking. Knowing there are still people out there with long Covid is heart breaking. I wish every single person who STILL deals with it to this day luck and I sincerely hope they will start to feel better soon so that they can pick up their lives again.
The vaccines only slightly reduce the chance of developing Long Covid, but do reduce our risk of hospitalisation from the acute respiratory infection, so absolutely still invaluable paired with other measures like opening windows, wearing a well fitting respirator indoors (as recommended by the WHO latterly also) and avoiding unventilated or crowded areas if possible
The updated vaccine almost completely eliminate the risk of developing long COVID because the current variants have a much more robust immune response and therefore any infection provide a much weaker immune response. It is really to do with what the level of immune escape of particular variants against vaccines. In other words, long COVID is due to stronger immune response from infections, even if symptoms were mild.
Well done Guardian. April 2022 for me. And I'm one of the luckier ones that have made appreciable steps towards getting better, but even 2.5 years on it still affects me on and off through PEM, brain fog and some strange neurological quirks. This film should be a series of people's stories on LC. If another comparable syndrome affected this many people there would be a national campaign and more funding directed towards it but it seems all anyone wants to do is forget covid, even thought it is still causing lasting issues right now to this very day. Ignoring something isn't a public health strategy that could ever work. Particularly when you accept the economic cost including the welfare cost of having 2 million people suffering various forms of harm that need support through losing their jobs or increased need for healthcare support.
There would certainly be plenty of stories to tell - but what Darren does so well is to speak to the wider problem through his own experience. As he rightly asserts, it's easy to be ignored when you're invisible. Glad things have improved for you to some degree
I relate to this so much, having had severe M.E. for 30 years and been mostly housebound. Had thought that long Covid would bring about more research which would also help those of us living for decades with a similar illness but the hope seems to be folorn. I hope Darren will improve and that there is also hope for all of us with these devastating chronic illnesses.
I had optimistically hoped that acknowledgment of Long Covid would lead to better things for patients of all post-viral illness (which account for many cases of CFS/ME). More fool me.
The invisible illness with no treatment. Apparently sufferers report lower life satisfaction than people with cancer. The moments of despair and hopelessness as you mourn your past life and face an unkown future are hard to comprehend, especially when someone sees you for five minutes and thinks you seem 'alright'.
Thank you for putting it in the title and even acknowledging that 'the pandemic is over'. What are we actually doing about people being reinfected and the risks involved with covid infections?
People who think that the pandemic is over its not over so many people now have long covid if you are unwell please can you stay at home don't infect others
After every time I've had covid. I had really awful fatigue for a month or longer afterwards. Worse than having covid its self. Brain fog and insomnia. It makes life so tiring and gravity feels so much more powerful. Luckily it only lasted up to two months. I hope he recovers from his long covid.
My heart goes out to Darren. Fellow long hauler here. The pandemic isn't over. And it won't ever be over unless we stop the chain of transmission and stop re-infections. *Most spread is asymptomatic.* We must continue to vax, mask, and socially distance. We must live our lives, just vax, mask, and distance.
look how "most spread is asymptomatic" deserved bold font lol Their desire is to ensure that healthy people will forever be presumed sick until proven otherwise, cause goal of the Covid response always was creating the corner stones of the famous and supposed new normality
Thank you for giving such a moving documentation of the struggles pain and affects in which seems to have been forgotten or buried away even a rejection from some areas of the population and political class we have been forgotten about and even persecuted. I have suffered for two years with long covid and the way it has affected my cystic fibrosis has ruined my life. Yet there are still so many that don’t understand and just assume I’m lazy or “swinging the led.” If life wasn’t already painful enough those comments and judgments cut even deeper, but this video has helped give a snap shot into the struggles and absolute ruin that this disease/illness has brought to my life and sadly many others. Please keep being a voice and highlighting the battles around this.
My friend got COVID a second time. Her doctor gave her a antiviral med. She had long-term shortness of breath from her first infection. The antiviral not only helped her to recover quickly but she felt much improvement in her breathing issue! She feels that her body was somehow holding on to the first infection and the antiviral got rid of it.
Hello Darren, if you happen to read this I wish the absolute best for you and your family. If I can offer you anything it took me 24 months before I could start trusting my body again and the brain fog started to lift. I hope very much that you make improvements at your pace and you get your life back. Much love to you and your family. ❤
It's grim stuff, I'm sorry to see Darren going through this. I'm on my second stint with long COVID and I'm really depressed about it, and Darren's got it way worse than I do. - The first infection in 2020 was mild (not even as bad as a cold), but left me with permanent heart palpitations. I also had exhaustion & brain fog that took months to clear up, but I did manage to get back to normal. - The second infection in September 2024 was like flu, and I was in bed for over a week, and I'm still struggling with symptoms. While I feel a little better, I thought it would've cleared up by now. It hasn't. I'm still frequently exhausted (often having to go back to bed after any kind of mental or physical exertion, as my eyes just start to close -- I describe it as 'angry tired') and it's getting to the point where reducing my hours at work won't cut it because I can't do my job at anything like the level I need to. I will likely need to be signed off for a bit to recuperate. The UK government needs to do more on multiple fronts, e.g. - Firstly, stop people getting COVID! We need better ventilation in workplaces, businesses and so on. At the least, GP surgeries, hospitals, schools, public transport etc. should be prioritised. - Secondly, more COVID vaccinations for those at risk (including those who've had long COVID in the past). I paid £100 for a private vaccination, but it was too late for me this time around (I know that vaccinations won't stop all infections, but a reduced risk is good enough for me -- I'll be getting a COVID vaccination every 6 months from now on). - More long COVID clinics / resources to help people who are sick. I've not yet had any kind of targeted help from my GP, so we'll see what happens next time I attend.
My thoughts with Darren, his family and all suffered with Long Covid or Post Viral Fatigue. I was diagnosed with PVF last February and though not as ill as Darren (i.e bedridden) I had similar energy and fatigue issues and despite medical confirmation of PVF there is no support. None. I got a sick note for three months and then the Doctor recently considered Long Covid but because of no formal diagnosis (which they acknowledged is a problem with self diagnosis) I couldn’t get LC support. Would like to discuss with Darren as he / they live a short distance away.
Thought the same thing. There is a way out, but it has to start with advocating for proper masking and clean air. I can only assume Darren is misinformed, and probably would take these precautions if public health hadn't utterly failed us.
Darren if you read this, I had very similar long covid symptoms to you and was house bound for 6 months 2020-2021. I read the book "Healing Back Pain" by Dr.Sarno and explored the mind body connection of this illness (there are many recovery stories online) . I am now fully recovered for 3 years. This may not help you but there is hope. My heart goes out to you.
My dad is affected by Strumpell Lorrain since he's more or less 50, diagnosed in 2003. His life always been way worse than the one this man affected by Long Covid has. I grew up with no chance of playing with him like other kids did, many people always asked me what, how, why was happening and I have been progressively forced to be dad of my dad. Nobody has ever given a shit since there's nothing to sell for it.
Hi Darren, I had long covid, chronic fatigue, for 2yrs from Jan 22, I’ve now recovered by spending hours, bedbound, everyday listening to yoga nidra meditation to calm my nervous system, very gradually over 18mths I slowly recovered with many setbacks. I know it’s a tough place to be & hope that you may feel some relief from it too soon.❤
@ I think so, I used to exercise a lot and haven’t regained my fitness level to pre LC as I am a little weary of pushing my body too much, as my life was very hectic prior although I have just signed up for a 60 mile bike ride in June for which I will need to start training for soon!
I really sympathise with Darren, chronic illness really does shatter your mental health - I caught the nasty respiratory virus that was doing the rounds back end of last year....I am still recovering from it now...I caught it in mid-October and had severe symptoms, I was bedridden all over xmas - even having it for three months has really affected my mental health....I really feel for poor Darren, being so poorly for a whole year...I really hope he recovers fully soon. sending much love and healing vibes his way. Don't give up Darren🙏❤🩹😌
Thank you for that. As a fellow long covid suffer, I truly hear you and echo everything you say including the emotional effects of an invisible long term illness. Your film helps with the sense of isolation. Again, thank you.
I have lived with a very similar condition, a form of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome for over 20 years. Before the onset I was athletic and active. I climbed Kilimanjaro. Then I was bedridden for 1.5 years and just never fully recovered. I feel for this man. In 20 years not one successful treatment has been developed for my condition. He is in the transition toward acceptance.
Darren also had a diagnosis of PoTS - but this doesn't feature in our edit. It seems to be very common for the two to be diagnosed together. Hopefully better understanding of these conditions will come
@ perhaps the shear number of long covid survivors will finally make it profitable for big pharma to accelerate clinical trials for new treatments. Our profit based medical system makes getting treatments for relatively rare conditions problematic. Neurologist Alexandru Barboi at Indiana U is probably one of the top docs in POTS research in the USA. He diagnosed me in 2003. The vasovagal component of POTS is very debilitating. Thank you for this story.
This was me in 2021, such a range of weird symptoms on top of the fatigue. Still think I have it although probably 80% better. Like this guy my “endurance” has gone so my walking is limited to about 4 miles or cycling to about 15 on an e-bike now from 20+ mile walks. Drs didn’t know what was wrong, I have health anxiety and tinnitus now.
It took me three years post covid infection to be able to walk 6 blocks, 3 blocks each way, on a level surface- the journey is long but there has been some incremental progress.
I had covid September 2022. In January 2023 long covid hit me hard. It affected my nerves and muscles, my white blood cell count, and my entire nervous system, my organs and gut, alsocmy right ear causing ongoing tinnitus and hearing loss. I also developed a panic about death. I spent 4 months in bed and until recently feel a bit of a change. I am doing better but I am also still in recovery from ongoing symptoms. I rely on stories like this to keep me sane and pushing on when everyone else around me dismisses the illness. It's something that just can't go away or is made up in my mind or bad anxiety.
Try four years, my friend. Astonishingly, I do not suffer at this poor dear man's level, but I am sick quite often. Not a week goes by without being impacted and limited by symptoms of long covid. I am so sorry for Darren.
I'll never be back, but for awhile I thought I would have to have someone live with me because of the brain fog. Long covid seems to have put inflammation on all problems that used to be small. Acetyl l carnitine 1500 mg has helped so much, especially the brain fog. I can also use the hand mower for about 20 to 30 minutes at a time. The small successes are huge comfort. Please research, I know how you feel, hope it might help some others too.
I had long covid (probably still do in some ways) but due to the fact that I'd end up homeless if I didn't go to work I gradually improved. Even three years in, I have noticed if I have several days off work and lie around resting that a lot of my symptoms return. It's common knowledge that over exerting yourself can cause post exertional malaise and so on but resting too much, at least for me, is just as harmful if not more so. If I'd been privileged enough to quit work and "rest" then I think I'd be basically disabled. As it is, I'm able to work and live normally despite still having some POTS symptoms and anxiety and fatigue. There seems to be some need for balance -- not too much and not too little. It's also very psychological. I can get 20,000 steps in on a work day and I actually start the day with symptoms and by the end of a 12 hour shift I feel almost completely normal.
'The pandemic isn't over' makes a headline but in framing the continuing pandemic as over the Guardian has been amongst the worst offenders. Continuously framing covid in the past-tense; comparing it with pasta(?) Tim Dowlings article. This guy has my sympathy but seems he takes zero precautions against his children becoming infected.
Thanks for your comment. We have been trying to keep the story of Long Covid alive across our journalism. See more here - www.theguardian.com/society/series/life-with-long-covid
“Zero precautions against his children becoming infected “ covid is both persistent and endemic amongst all the species it infects .What are you implying ,that he isolate his children from all human contact ? Surly it’s better they develop natural immunity while they are in a low risk stage of their lives .
The delta variant of COVID was transmitting very high, it was highly virulent, it has a moderate immune escape against vaccines based on original strain. If we get another variant with a moderate immune escape to be dominating and it is not significantly less severe than previous omicrons, then I would be more serious about taking extra precautions. As I mentioned, the current variant that is dominant has a very low to almost non existent immune escape against the vaccines based on JN.1. It may have been the case in the recent past that vaccines only slightly reduce risk of long covid but now it very significantly reduce risk of long covid (reduce risk by 90% as opposed to just 30%) because immune response from updated vaccines are much more potent, in other words, much more lock and key. Not only provide T cell immunity like from previous variants but also very strong neutralisation of antibodies. Time will tell whether current vaccines will remain as effective as they are today against most recent variants and whether the disease may be getting much less virulent and whether the disease may remain less transmissible than flu.
I got a virus in early 2020 it wasn’t Covid. It was influenza a and since then I have had terrible fatigue to the point that I have days I can barely move never had that before I was sick and it’s been five years now and the doctors can’t figure out what’s going on
You have to adapt to your situation. You can still do thing with your loved ones- read stories, puzzles, arts and crafts, etc. Stay positive and cherish each moment you have. ❤❤❤
I was diagnosed log covid in 2021, was active, suddenly bed bound, then house bound, now very active again and almost recovered. My recommendation, don't wait for some external treatment. Calm the nervous system, start to nudge yourself out of your comfort zone and watch for anxiety/doom spiralling. You are physically safe, and can retrain the brain and nerves to stop producing symptoms with a slow, gentle, confident progression. This is my experience. Shout out to everyone going through this and to their loved ones. X
@@tomsmith5936 this is my story too, though the only diagnosis I got was POTS. Not that labels really matter. The Mayo Clinic has an online long covid program and the gist of it is to fond balance. Not overdoing but not lying in bed all day either. That balance seems to be the key to recovery. They call it a sensitized nervous system. Obviously some people have tissue damage which requires medical treatment but for a lot of us this gradual improvement can take place.
I'm the same with Long Covid, it was like my body and brain aged 30 years in the space of a few weeks, I now barely get out, need a mobility scooter when I do and have damage to multiple organs in my body causing all sorts of medical problems, I didn't die though, so I have hope
Can someone give me an explanation as to exactly what the damage is? Is it long term damage to the lungs? Does anyone know what manifestation of long covid he has? I think if they included more brass tax medical info it would help with having an educated understanding of this, and perhaps a more solid starting point for contemplating treatment
the damage is this: in 90% of cases, people with 0, 1, 2 subscribers and having names and surnames that look generated by some AI come here and tell they have Long Covid.
@ lol. This never occurred to me but you have convinced me that i might need a name change. Subscribers though will never change as I have nothing of value as a content creator that i plan to do to change that. But thank you for the insight. Incidentally I am still curious about my question.
Can I just check that in 2021, you got both vaccines? Had you had both vaccines, you would have had a milder case of Covid and would not be suffering now. Or did you refuse the vaccine? Vaccines were available from December 2020. Just saying.
@@CatatonicImperfect I have compassion for him. I just question why he did not do what millions did, to avoid Long Covid. It IS a reasonable question. If somebody smokes heavily and gets lung cancer, you don't get all compassionate, you say that you knew the dangers of smoking and you still did it. Now you are dying of lung cancer, through your own fault.
Runs upstairs with no railing after struggling to stir tea? Maybe it is depression. I know during my depression I would worry excessively about physical ailments and that worry created more physical pain in my mind that wasn't really there
This stuff is very hard for kids to have to bear the burden of. Folks it’s fine to expose your kids to some but not all of your problems. Have a care for how they may have their own lives derailed by your emotions. This comes from an adult whose life has been ruled by parents with significant and burdensome issues. Somewhere between awareness and imposing is sharing and that is enough for any child to cope with. Keep the worst to yourself and get past it for the sake of your own children and their precarious path.
The draft of the self declared pandemic treaty is negotiated relentlessly. These planned adverse reactions will continue with disease X or whatever the next emergency is called.
Not sure I buy long covid. I think it's probably more likely a mass psychogenic ilness. I'm not saying it's not 'real' but it's far too random in it's presentation for me to consider it a physiological illness. I know there can be 'markers' in the blood but these can also be caused by psychological illness.
Typical comment from someone who knows absolutely nothing about the devastating effects of this condition. You would 'buy' it if you had it believe me.
No I’m sure you’re right, it’s all in our head, and our spinal column, nervous system, lungs, heart. I had CV in Dec 2019, 104.9 fever, unconscious under every blanket in the house for two days, called work the third day, everyone had been sick store was closed. Had a tight chest and lingering cough for two months. Mid 2020 woke up with a swollen heart, years of navigating the Med Industry here in the states, officially diagnosed with brain lesions and swollen spinal cord (via fMRI) diagnosed with disautonomia/POTS by a cardiologist tilt table test and EDS symptoms loose joints, was covered in petechiae from head to toe. I guess I’m lucky to be alive, can’t work, can’t participate in my children’s lives and since people can’t SEE brain lesions and a damaged heart by looking at me, I also don’t get the compassionate response that a more visible ailment brings. So , ya, if it calms your fears to believe people are just “making it up” or “ causing their own symptoms” you keep believing that.
over-amplified like the original Covid. As I've always said, Covid and Long Covid are important cause there's something to sell, while Strumpell Lorrain ruining life of my dad since 2003 isn't, cause there's nothing to sell for it. This is how it works.
plus, being positive for Covid with one of those ridiculous PCR tests (especially after you took three, four or even more of those ridiculous vaccines) or claiming you are affected by Long Covid, creates kind of self-comfort zone, where you can find "another of those who did the right thing", "more responsible while you aren't", "if affected me, therefore I can tell society how they must live in order to avoid re-infections bla bla bla". In reality they failed and took it anyway, so there's nothing to teach and tell others.
Luckily, for us, we don’t need you to buy anything,! We’re all too busy dealing with these conditions to worry About someone who has the luxury of not being affected and therefore can choose not to believe it’s real. I genuinely hope for your sake that you don’t get the evidence that changes your mind because I wouldn’t wish it on anybody, not even you.
The Guardian needs to do more coverage of disability and what is being done to these groups who have no representation and have been shut out of society. Many say that how they are treated is worse than their disabilities. The situation is scandalous and dangerous and the government are gearing up to make things even worse.
We are trying - please do give our recent video a watch - ruclips.net/video/zYFUvhAuU-Y/видео.html
@theGuardian Thanks. It's late in the day. The gov are responsible for many deaths and for ruining countless lives. This has been ignored because people think of disabled people as a separate category of human, ignoring that our rights are the bedrock of theirs. Systemic ableism is so entrenched that people don't perceived it. Ableism is root of F ism and thus needs to be understood and addressed.
Seconded. This is a pressing universal concern across the globe as corporate capitalist culture embraces regressive ideologies intent on negating all difference; meanwhile our leaders act as if this polarization is inevitable and refuse to acknowledge that, in this culture, marginalization is a sure path to annihilation. Who needs the trains to run on time when you can save so much more money and boost your profits by letting things completely fall apart?
I agree with you 100%. This situation is outrageous and needs more coverage.
@@Talentedtadpole we can’t even afford to exist. I’m educated with a professional license and I’ve lost everything.
So sad to watch Darren's story. I developed a post-viral syndrome from a dengue infection in July last year and the absolute carnage it wreaks on your mental health is really difficult to comprehend if you haven't had a long-term illness. Almost overnight you have to accept that your life as you knew it is over.
Darren, if you read these comments know that you are doing an amazing job and I'm sure your kids are very proud of you. Stay strong and keep going - you can recover.
This is such a lovely heartfelt comment and true that recovery is a possibility.
Try a Semax/Selank peptide stack it eliminates chronic fatigue and boosts immunity vehemently
I have been chronically ill and disabled since a Covid reinfection in May 2022. Lost everything, wouldn't recommend. Please avoid reinfections, it is not worth it. And I fell ill as a completely healthy 20-something year old.
I hope you're able to recover. Did the doctor say you will or do they not know? Did you have all your vaccinations?
Aren't most people "avoiding" an infection though? What does "it's not worth it" mean? Worth what?
@@williezar2231 thank you for your question! The doctors unfortunately know very little. I have the ME/CFS and dysautonomia version of Long Covid. There is very little support available as there has been a lack of biomedical research into these conditions. I did have my initial vaccinations but due to my age I was not eligible for boosters. However, unfortunately vaccinations do not fully stop transmission or the development of Long Covid. Great for stopping deaths and ICU admissions, but not the development of post-covid chronic illness.
@@revivedfears apologies for the confusion. Unfortunately many folks think Covid is "just a cold" and do not adopt simple mitigation strategies such as masking during surges or good ventilation. I put the blame on the lack of government messaging around the dangers of covid reinfections. By "not worth it," I mean it's not worth it rolling the dice whether this covid infection will spark a chronic condition. Maybe you were fine the first 4 times, but the 5th time cripples you. I guess I am saying just because you were fine with some covid infections, it doesn't mean you will be with future ones.
"Please avoid reinfections, it's Not worth it."
Ehm, no one gets deliberately "reinfected" and sick. 🤦🏻♀️
You can't avoid getting sick .
I have ME/CFS. I find it upsetting an infuriating that ME/CFS research, healthcare policy etc could have been a strong starting point for understanding and treating long covid. However, due to me/cfs being so underfunded, and stigmatised this was not the case. I worry that people with long covid worsen due to being recommended the same recycled therapies like grades exercise therapy (or something similar) when ME/CFS patients have known for decades that this is harmful for us and finally after a lot of campaigning the research that 'evidenced' this has been proven to have been bad science and research with (amongst other things) the parameters for recovery being changed to make it seem more effective (PACE trial). The only upside here is that organisations aree joining forces and some knew to research from day 1 as it was obvious something like this would happen.
Thank you for your comment.
100% yes to this.
I had Covid almost exactly two years ago. I felt really ill for about a week, like serious flu. I quickly recovered, but soon noticed that I was sleeping 9 hours per night instead of my previous 7. Also, I no longer felt like going for walks - I had previously walked most days, often 10-12 miles. Next, I started feeling nasty aches, starting at my hips & moving down my legs. Until Covid, I had enjoyed excellent health and felt much younger than my age (now 74). Over the last 2 years, these symptoms have come & gone almost at random. The overall trend is towards feeling better, but very slowly and with numerous setbacks.
Thank you for your comment. Good to hear improvement is happening, albeit slowly.
Go organic and take anti-inflammatory nutrition and activity seriously. It will help a lot.
Same here. I was so active before I got sick waking up at five -6 AM jumping in the shower getting ready for my day now there’s days that my body feels so heavy I can barely walk . extreme fatigue no matter what I do, and the brain fog is so bad to the point that I feel so disconnected from reality
Well done for highlighting this situation that’s still affecting thousands of us. It is particularly difficult as it’s not specifically diagnosed/understood and to look at a lot of sufferers seem OK at first glance. Keep focussed on what you can do and all the best for the future.
*millions, but totally right it is, and more to come with all protections removed and COVID waves being all year round
thousands lol
@@dontnoable billions
Quintillions
I was diagnosed at 23 after more than 2 years of misdiagnosed .... in absence of anything else they said it was due to sars cov2 thanks to a brain Pet scan with typical disfunction in 3 specific regions allying haulers have.
This is sars cov 2 !!!!!!!!!!
I was infected in September of 2022. The acute infection hit me pretty hard. About a month and a half after my initial infection, I still wasn't feeling fully better. I was sleeping a lot more, finding that sleep was never fully restorative; and I was having trouble thinking. I tried returning to workouts, but found that just a single workout of even moderate intensity would wipe me out for almost a week. (I was a gymnast for 13 years, then did track for a couple years, then returned to calisthenics and hand-balancing. Just before infection, I was working out 4 times a week on average.)
I didn't understand this illness, and was trying to treat recovery like any other viral illness I'd experienced in the past. That is, I was just trying to push past the malaise. I decided to become quite physically involved in the UC graduate student strike that took place in November that year, doing many hours of picketing each day for about two weeks. It was grueling -- hot, sunny, and my symptoms were getting worse and worse. Heart palpitations, racing heart, pain in my chest, difficulty breathing, intense fatigue and brain fog. I didn't know what was going on. So I just kept on going, until the pain in my chest was to intense to brush aside.
In December, I was diagnosed with long-COVID. Fast-forward 1.5 years to May 2024, and I was diagnosed with POTS and CFS. (Although, I consider myself one of the lucky ones, as many folks have to wait upwards of 5 years or even more to obtain such diagnoses.) It's been over two years since the initial infection, and I'm still suffering greatly from it. My greatly reduced capacity for exertion is of course quite annoying, as is the PEM. But what pains me the most is the brain fog. I was (am?) a graduate student, and my mind's integrity was absolutely central to the life I was building for myself.
It can be really hard to explain what brain fog feels like. It's certainly uncomfortable, if not actually painful. It feels somewhat like the cognitive impairment of a hangover. For me, word recall is compromised. My short-term and long-term memory are both compromised. My executive function is compromised. My capacity to run through and understand arguments is compromised. My capacity to express my thoughts clearly is compromised. All of these I need for my work.
The best metaphor I can come up with for how brain fog feels and affects me is the following. Trying to think is akin to struggling to walk through mud. The deeper the mud is (the worse your brain fog is), the slower your walk (think), and the more you have to push and exert yourself in order to get to the other side (complete the cognitive task at hand). Even when the mud is quite shallow, it still slows you down. It is still harder to get to your destination. But these days, I'm happy if the mud is shallow, rather than deep.
One final thing I'll say: long-covid, like many other chronic illnesses, is invisible in several senses. In addition to the sense that Darren mentions in the video -- namely, that we're invisible because we're largely housebound, thus never seen by the healthy public -- long-covid is invisible in the further sense that to someone who doesn't know anything about chronic illnesses, I might look perfectly "healthy."
Thank you for taking the time to write this. Hope things improve for you
I'm also sick with long covid from the September 2022 covid.
Reach out to Pamela Rose if your struggling with ME/CFS or long covid. I have ME/CFS. She is a life saver.
Got my Covid in July 2022 and was subsequently diagnosed with PoTS. Used to do 100 mile bike rides weekly, now I can't leave the house.
Thank you for your comment. Hope things improve for you.
Exact same as me, exact same time of onset (sep2021). Constant heaviness, never waking up refreshed, feeling sick all the time.
Sorry to hear of your difficulties. There are so many similarities reported by people with Long Covid. Hopefully better understanding of this condition will come.
Was it COVID? Or the Vaccine? I seem to see that it's only the vaccinated that claim to suffer from Long Covid...sorry if that's the case one way or the other. Look into Chlorine Dioxide.
I'm coming up on 5 years of long covid. I've lost everything. I was trained for a 70.3 mile triathlon and now I am about to lose my 2nd car.
I am still on lockdown because public health won’t acknowledge I am high risk. Long Covid has been impossibly difficult. I can’t keep doing this. Thank you for this coverage. May there be more.
Thanks for your comment, and sorry to hear you've been so badly affected. Hope your situation improves and that the necessary attention arrives for this condition
Please keep sharing and highlighting this. All thoughts with Darren and others.
I caught something in may 2023, the worst flu like symptoms ive ever had, probably covid but didnt test at the time. Havent been quite the same since.
I got a bit better that summer and started attempting 'normal' activities again (for me, this was 15 mile+ hilly walks, long cycles, working full time, regular trips, social life and activity). After one cycle in autumn 2023, this triggered post extertional malaise like ive never know, unable to think, move for weeks at a time, brain fog, aches. Struggled through working for next six months or so, with increasing absences in a stressful environment (with other external stuff going on too).
Eventually all got too much and was finally signed off in May 2024, which saw slow and steady improvement via cold water immersion, yoga nidra, breathing exercises. Nowhwre near 100% yet (can mostly potter around and do day to day things now but not returned to my pre infection activities, still breathless on slopes and upstairs, achey and brain fog, but have recently returned to work on a phased return.
GP said they openly didnt understand it. Went through all these relevant tests, xrays, echo scans etc, all clear. Six sessions of long covid physio were great, supportive but mostly holistical. No treatment of course.
A referral to the excellent ENO Breathe course was brilliant too, would recommend that if people can access it. (Wasnt made aware of it til very late on in the long Covid clinic).
Support has been very fragmented. Work and HR have been difficult and made things worse, due to a lack of understanding. Ive found Jackie Baxter's Long Covid podcast very useful too. All the best everyone.
Thanks for this detailed report on your own experience. Best wishes
good thing he's in the uk; if he was in the usa, he wouldve been fired for not showing up to work and everything would've snowballed from there.
@@Cam.Klingon The UK is rapidly headed in the same direction.
And he’d be in serious debt. The UK is so much better.
@@helenpauls1496 Don't think people realise how quickly this is changing. The social safety net is being dismantled. People ignored what is being done to disabled people and do not care.
Did you not watch the video? It says he lost his job
@@easymarks1637 he eventually lost it...
I am having the same issues and my Doctor believes I have Long Covid. I have never felt like this before and I am looking into retiring because I can't do my job anymore.
What a terrible shame, but as you said Darren, invisible, it's so important that you made this film to help us understand your reality, and that of so many others. Thank you, blessings
We all need to pay attention to how sick, elderly and disabled people are treated. Their rights are YOUR rights. A 2016 UN report found the UK government had committed 'grave and systemic violations of disabled people's human rights.' the situation is now worse. This is playing a key part in many of the destructive things that are happening in this country.
I am dealing with this right now, despite being very cautious with my health - hygiene, nutrition, distancing, masking, etc. I am immunocompromised, I was affected as a dependent by the Camp Lejeune toxic water contamination that has killed and sickened hundreds of thousands of people over decades. This has absolutely devastated every aspect of my life - emotional, financial, relationships, and of course my ability to be the once athletic, active person I was. For those who are housebound, and severely disabled - we are indeed invisible and mostly ignored by society at large.
This makes me so sad. I recently had Covid (end of November 2024) and to me, it felt like a flu. It wasn't a bad flu though, just your typical shivering, feeling hot, sweating. I also had a very sore throat and a bit of a cold. I had 3 Covid jabs (all Pfizer, not sure if relevant) and of course after all these years the virus has been mutating so much that I got a watered down version of it.
But knowing how many people died is heart breaking. Knowing there are still people out there with long Covid is heart breaking. I wish every single person who STILL deals with it to this day luck and I sincerely hope they will start to feel better soon so that they can pick up their lives again.
The vaccines only slightly reduce the chance of developing Long Covid, but do reduce our risk of hospitalisation from the acute respiratory infection, so absolutely still invaluable paired with other measures like opening windows, wearing a well fitting respirator indoors (as recommended by the WHO latterly also) and avoiding unventilated or crowded areas if possible
The updated vaccine almost completely eliminate the risk of developing long COVID because the current variants have a much more robust immune response and therefore any infection provide a much weaker immune response. It is really to do with what the level of immune escape of particular variants against vaccines. In other words, long COVID is due to stronger immune response from infections, even if symptoms were mild.
Well done Guardian. April 2022 for me. And I'm one of the luckier ones that have made appreciable steps towards getting better, but even 2.5 years on it still affects me on and off through PEM, brain fog and some strange neurological quirks. This film should be a series of people's stories on LC. If another comparable syndrome affected this many people there would be a national campaign and more funding directed towards it but it seems all anyone wants to do is forget covid, even thought it is still causing lasting issues right now to this very day. Ignoring something isn't a public health strategy that could ever work. Particularly when you accept the economic cost including the welfare cost of having 2 million people suffering various forms of harm that need support through losing their jobs or increased need for healthcare support.
There would certainly be plenty of stories to tell - but what Darren does so well is to speak to the wider problem through his own experience. As he rightly asserts, it's easy to be ignored when you're invisible. Glad things have improved for you to some degree
The problem with this illness is that its highly politicized. People wanna leave the pandemic behind them. People like us feel abandoned
A syndrome like M.E. thats been around for decades? No, the government still doesn't care.
I relate to this so much, having had severe M.E. for 30 years and been mostly housebound. Had thought that long Covid would bring about more research which would also help those of us living for decades with a similar illness but the hope seems to be folorn. I hope Darren will improve and that there is also hope for all of us with these devastating chronic illnesses.
I had optimistically hoped that acknowledgment of Long Covid would lead to better things for patients of all post-viral illness (which account for many cases of CFS/ME). More fool me.
The invisible illness with no treatment. Apparently sufferers report lower life satisfaction than people with cancer. The moments of despair and hopelessness as you mourn your past life and face an unkown future are hard to comprehend, especially when someone sees you for five minutes and thinks you seem 'alright'.
Thank you for putting it in the title and even acknowledging that 'the pandemic is over'. What are we actually doing about people being reinfected and the risks involved with covid infections?
People who think that the pandemic is over its not over so many people now have long covid if you are unwell please can you stay at home don't infect others
Thank you for bringing attention to the missing millions.
Devastating. Poor chap.
After every time I've had covid. I had really awful fatigue for a month or longer afterwards. Worse than having covid its self. Brain fog and insomnia. It makes life so tiring and gravity feels so much more powerful. Luckily it only lasted up to two months. I hope he recovers from his long covid.
My heart goes out to Darren. Fellow long hauler here. The pandemic isn't over. And it won't ever be over unless we stop the chain of transmission and stop re-infections. *Most spread is asymptomatic.* We must continue to vax, mask, and socially distance. We must live our lives, just vax, mask, and distance.
BOT
look how "most spread is asymptomatic" deserved bold font lol
Their desire is to ensure that healthy people will forever be presumed sick until proven otherwise, cause goal of the Covid response always was creating the corner stones of the famous and supposed new normality
@leonardofabbri7930 I'm not a bot.
@@public_presence you act like one, repeating the usual mantras.
keep doing the things that led people into long term issues? what is wrong with orange juice?
Thank you for giving such a moving documentation of the struggles pain and affects in which seems to have been forgotten or buried away even a rejection from some areas of the population and political class we have been forgotten about and even persecuted. I have suffered for two years with long covid and the way it has affected my cystic fibrosis has ruined my life. Yet there are still so many that don’t understand and just assume I’m lazy or “swinging the led.” If life wasn’t already painful enough those comments and judgments cut even deeper, but this video has helped give a snap shot into the struggles and absolute ruin that this disease/illness has brought to my life and sadly many others. Please keep being a voice and highlighting the battles around this.
My friend got COVID a second time. Her doctor gave her a antiviral med. She had long-term shortness of breath from her first infection. The antiviral not only helped her to recover quickly but she felt much improvement in her breathing issue! She feels that her body was somehow holding on to the first infection and the antiviral got rid of it.
Thanks for speaking about this Darren, best wishes to you and your family
Hello Darren, if you happen to read this I wish the absolute best for you and your family.
If I can offer you anything it took me 24 months before I could start trusting my body again and the brain fog started to lift.
I hope very much that you make improvements at your pace and you get your life back.
Much love to you and your family. ❤
Thanks for the kind message. I'm sure Darren will see it
It's grim stuff, I'm sorry to see Darren going through this. I'm on my second stint with long COVID and I'm really depressed about it, and Darren's got it way worse than I do.
- The first infection in 2020 was mild (not even as bad as a cold), but left me with permanent heart palpitations. I also had exhaustion & brain fog that took months to clear up, but I did manage to get back to normal.
- The second infection in September 2024 was like flu, and I was in bed for over a week, and I'm still struggling with symptoms. While I feel a little better, I thought it would've cleared up by now. It hasn't.
I'm still frequently exhausted (often having to go back to bed after any kind of mental or physical exertion, as my eyes just start to close -- I describe it as 'angry tired') and it's getting to the point where reducing my hours at work won't cut it because I can't do my job at anything like the level I need to. I will likely need to be signed off for a bit to recuperate.
The UK government needs to do more on multiple fronts, e.g.
- Firstly, stop people getting COVID! We need better ventilation in workplaces, businesses and so on. At the least, GP surgeries, hospitals, schools, public transport etc. should be prioritised.
- Secondly, more COVID vaccinations for those at risk (including those who've had long COVID in the past). I paid £100 for a private vaccination, but it was too late for me this time around (I know that vaccinations won't stop all infections, but a reduced risk is good enough for me -- I'll be getting a COVID vaccination every 6 months from now on).
- More long COVID clinics / resources to help people who are sick. I've not yet had any kind of targeted help from my GP, so we'll see what happens next time I attend.
Thank you for this considered response. There are certainly steps that can be taken to reduce the impact of this condition
My thoughts with Darren, his family and all suffered with Long Covid or Post Viral Fatigue. I was diagnosed with PVF last February and though not as ill as Darren (i.e bedridden) I had similar energy and fatigue issues and despite medical confirmation of PVF there is no support. None. I got a sick note for three months and then the Doctor recently considered Long Covid but because of no formal diagnosis (which they acknowledged is a problem with self diagnosis) I couldn’t get LC support. Would like to discuss with Darren as he / they live a short distance away.
This guy should be advocating for masks, not going out maskless trying to catch it again
Thought the same thing. There is a way out, but it has to start with advocating for proper masking and clean air. I can only assume Darren is misinformed, and probably would take these precautions if public health hadn't utterly failed us.
The truth is simple, guys 😁
Read the scientific literature on masks they are as useful as tin foil hats .
Darren if you read this, I had very similar long covid symptoms to you and was house bound for 6 months 2020-2021. I read the book "Healing Back Pain" by Dr.Sarno and explored the mind body connection of this illness (there are many recovery stories online) . I am now fully recovered for 3 years. This may not help you but there is hope. My heart goes out to you.
Thanks for your message
My dad is affected by Strumpell Lorrain since he's more or less 50, diagnosed in 2003.
His life always been way worse than the one this man affected by Long Covid has.
I grew up with no chance of playing with him like other kids did, many people always asked me what, how, why was happening and I have been progressively forced to be dad of my dad.
Nobody has ever given a shit since there's nothing to sell for it.
Hi Darren, I had long covid, chronic fatigue, for 2yrs from Jan 22, I’ve now recovered by spending hours, bedbound, everyday listening to yoga nidra meditation to calm my nervous system, very gradually over 18mths I slowly recovered with many setbacks. I know it’s a tough place to be & hope that you may feel some relief from it too soon.❤
Hi Nicky thats great, would you say youre 100% back?
@ I think so, I used to exercise a lot and haven’t regained my fitness level to pre LC as I am a little weary of pushing my body too much, as my life was very hectic prior although I have just signed up for a 60 mile bike ride in June for which I will need to start training for soon!
I really sympathise with Darren, chronic illness really does shatter your mental health - I caught the nasty respiratory virus that was doing the rounds back end of last year....I am still recovering from it now...I caught it in mid-October and had severe symptoms, I was bedridden all over xmas - even having it for three months has really affected my mental health....I really feel for poor Darren, being so poorly for a whole year...I really hope he recovers fully soon. sending much love and healing vibes his way. Don't give up Darren🙏❤🩹😌
Very interesting topic. Didn't know about this. Very sad.
2.5 years with fevers, brain fog etc here
15 years of brain fog here!
Thank you for that. As a fellow long covid suffer, I truly hear you and echo everything you say including the emotional effects of an invisible long term illness. Your film helps with the sense of isolation. Again, thank you.
Bot
I have lived with a very similar condition, a form of autonomic dysfunction called Postural Orthostatic Tachycardia Syndrome for over 20 years. Before the onset I was athletic and active. I climbed Kilimanjaro. Then I was bedridden for 1.5 years and just never fully recovered. I feel for this man. In 20 years not one successful treatment has been developed for my condition. He is in the transition toward acceptance.
Darren also had a diagnosis of PoTS - but this doesn't feature in our edit. It seems to be very common for the two to be diagnosed together. Hopefully better understanding of these conditions will come
@ perhaps the shear number of long covid survivors will finally make it profitable for big pharma to accelerate clinical trials for new treatments. Our profit based medical system makes getting treatments for relatively rare conditions problematic. Neurologist Alexandru Barboi at Indiana U is probably one of the top docs in POTS research in the USA. He diagnosed me in 2003. The vasovagal component of POTS is very debilitating. Thank you for this story.
Thank you for highlighting this ❤️
This was me in 2021, such a range of weird symptoms on top of the fatigue. Still think I have it although probably 80% better. Like this guy my “endurance” has gone so my walking is limited to about 4 miles or cycling to about 15 on an e-bike now from 20+ mile walks.
Drs didn’t know what was wrong, I have health anxiety and tinnitus now.
Good luck in your continued recovery
@ Thank you
You guys are producing higher-quality stuff than the BBC (imo), keep up the good work!
It took me three years post covid infection to be able to walk 6 blocks, 3 blocks each way, on a level surface- the journey is long but there has been some incremental progress.
I had covid September 2022. In January 2023 long covid hit me hard.
It affected my nerves and muscles, my white blood cell count, and my entire nervous system, my organs and gut, alsocmy right ear causing ongoing tinnitus and hearing loss. I also developed a panic about death. I spent 4 months in bed and until recently feel a bit of a change. I am doing better but I am also still in recovery from ongoing symptoms. I rely on stories like this to keep me sane and pushing on when everyone else around me dismisses the illness. It's something that just can't go away or is made up in my mind or bad anxiety.
Thanks for the message. Best wishes for your recovery
I am finding that high protein intake and vitamin supplements are helping.
Try four years, my friend. Astonishingly, I do not suffer at this poor dear man's level, but I am sick quite often. Not a week goes by without being impacted and limited by symptoms of long covid. I am so sorry for Darren.
I'm coming up to 5 years with this. Very little sympathy from medical professionals, or family, or colleagues.
we've been abandoned by the state.
I'll never be back, but for awhile I thought I would have to have someone live with me because of the brain fog. Long covid seems to have put inflammation on all problems that used to be small. Acetyl l carnitine 1500 mg has helped so much, especially the brain fog. I can also use the hand mower for about 20 to 30 minutes at a time. The small successes are huge comfort. Please research, I know how you feel, hope it might help some others too.
I had long covid (probably still do in some ways) but due to the fact that I'd end up homeless if I didn't go to work I gradually improved. Even three years in, I have noticed if I have several days off work and lie around resting that a lot of my symptoms return. It's common knowledge that over exerting yourself can cause post exertional malaise and so on but resting too much, at least for me, is just as harmful if not more so. If I'd been privileged enough to quit work and "rest" then I think I'd be basically disabled. As it is, I'm able to work and live normally despite still having some POTS symptoms and anxiety and fatigue. There seems to be some need for balance -- not too much and not too little. It's also very psychological. I can get 20,000 steps in on a work day and I actually start the day with symptoms and by the end of a 12 hour shift I feel almost completely normal.
Wishing you good health and happiness, Darren 🙏😇✨️✨️👑💐❤️
'The pandemic isn't over' makes a headline but in framing the continuing pandemic as over the Guardian has been amongst the worst offenders.
Continuously framing covid in the past-tense; comparing it with pasta(?) Tim Dowlings article.
This guy has my sympathy but seems he takes zero precautions against his children becoming infected.
Thanks for your comment. We have been trying to keep the story of Long Covid alive across our journalism. See more here - www.theguardian.com/society/series/life-with-long-covid
“Zero precautions against his children becoming infected “ covid is both persistent and endemic amongst all the species it infects .What are you implying ,that he isolate his children from all human contact ? Surly it’s better they develop natural immunity while they are in a low risk stage of their lives .
I wonder how many key workers - people who actually do vital work, such as maintaining utilities - have got long covid.
5 years here...its a journey
bot
The delta variant of COVID was transmitting very high, it was highly virulent, it has a moderate immune escape against vaccines based on original strain. If we get another variant with a moderate immune escape to be dominating and it is not significantly less severe than previous omicrons, then I would be more serious about taking extra precautions. As I mentioned, the current variant that is dominant has a very low to almost non existent immune escape against the vaccines based on JN.1. It may have been the case in the recent past that vaccines only slightly reduce risk of long covid but now it very significantly reduce risk of long covid (reduce risk by 90% as opposed to just 30%) because immune response from updated vaccines are much more potent, in other words, much more lock and key. Not only provide T cell immunity like from previous variants but also very strong neutralisation of antibodies. Time will tell whether current vaccines will remain as effective as they are today against most recent variants and whether the disease may be getting much less virulent and whether the disease may remain less transmissible than flu.
Thank you for your comment
I got a virus in early 2020 it wasn’t Covid. It was influenza a and since then I have had terrible fatigue to the point that I have days I can barely move never had that before I was sick and it’s been five years now and the doctors can’t figure out what’s going on
I think I have long covid too. So debilitating. 😢 I wish Darren the best. ❤
How many vaccines did this man have?
You have to adapt to your situation. You can still do thing with your loved ones- read stories, puzzles, arts and crafts, etc. Stay positive and cherish each moment you have. ❤❤❤
I was diagnosed log covid in 2021, was active, suddenly bed bound, then house bound, now very active again and almost recovered. My recommendation, don't wait for some external treatment. Calm the nervous system, start to nudge yourself out of your comfort zone and watch for anxiety/doom spiralling. You are physically safe, and can retrain the brain and nerves to stop producing symptoms with a slow, gentle, confident progression. This is my experience. Shout out to everyone going through this and to their loved ones. X
diagnosed by who? yourself or a doctor who doesn't even know what Long Covid is cause it could be anything and its opposite?
@leonardofabbri7930 Ummm, the latter? I agree that 'Long Covid' is a very broad term, but I don't understand your point.
@@tomsmith5936 this is my story too, though the only diagnosis I got was POTS. Not that labels really matter. The Mayo Clinic has an online long covid program and the gist of it is to fond balance. Not overdoing but not lying in bed all day either. That balance seems to be the key to recovery. They call it a sensitized nervous system. Obviously some people have tissue damage which requires medical treatment but for a lot of us this gradual improvement can take place.
I'm the same with Long Covid, it was like my body and brain aged 30 years in the space of a few weeks, I now barely get out, need a mobility scooter when I do and have damage to multiple organs in my body causing all sorts of medical problems, I didn't die though, so I have hope
Get vaccinated 😂
Try vitamin d, natto and chai made from powdered cloves
old linus sebastian
Prayers for him and family
No mention of Lambeth evicting 200 people Guardian? No prizes for guessing who’ll be getting those properties and they won’t be Brits.
Can someone give me an explanation as to exactly what the damage is? Is it long term damage to the lungs? Does anyone know what manifestation of long covid he has? I think if they included more brass tax medical info it would help with having an educated understanding of this, and perhaps a more solid starting point for contemplating treatment
the damage is this: in 90% of cases, people with 0, 1, 2 subscribers and having names and surnames that look generated by some AI come here and tell they have Long Covid.
@ lol. This never occurred to me but you have convinced me that i might need a name change. Subscribers though will never change as I have nothing of value as a content creator that i plan to do to change that. But thank you for the insight. Incidentally I am still curious about my question.
There we go. Changed.
Auto immunity and mashed up ace2receptors .
💖💖💖
Can I just check that in 2021, you got both vaccines? Had you had both vaccines, you would have had a milder case of Covid and would not be suffering now. Or did you refuse the vaccine? Vaccines were available from December 2020. Just saying.
Even people who hurt their health through their own fault deserve compassion, though.
@@CatatonicImperfect I have compassion for him. I just question why he did not do what millions did, to avoid Long Covid. It IS a reasonable question. If somebody smokes heavily and gets lung cancer, you don't get all compassionate, you say that you knew the dangers of smoking and you still did it. Now you are dying of lung cancer, through your own fault.
Runs upstairs with no railing after struggling to stir tea? Maybe it is depression. I know during my depression I would worry excessively about physical ailments and that worry created more physical pain in my mind that wasn't really there
This stuff is very hard for kids to have to bear the burden of. Folks it’s fine to expose your kids to some but not all of your problems. Have a care for how they may have their own lives derailed by your emotions. This comes from an adult whose life has been ruled by parents with significant and burdensome issues. Somewhere between awareness and imposing is sharing and that is enough for any child to cope with. Keep the worst to yourself and get past it for the sake of your own children and their precarious path.
The draft of the self declared pandemic treaty is negotiated relentlessly. These planned adverse reactions will continue with disease X or whatever the next emergency is called.
Ivor Caplin arrest
Sad story, but dreadful title.
im sorry isnt this linus tech?
FIRST!
😂
yeah boiiiii! Big baller pussy melter first commenter!
Not sure I buy long covid. I think it's probably more likely a mass psychogenic ilness. I'm not saying it's not 'real' but it's far too random in it's presentation for me to consider it a physiological illness. I know there can be 'markers' in the blood but these can also be caused by psychological illness.
Typical comment from someone who knows absolutely nothing about the devastating effects of this condition. You would 'buy' it if you had it believe me.
No I’m sure you’re right, it’s all in our head, and our spinal column, nervous system, lungs, heart. I had CV in Dec 2019, 104.9 fever, unconscious under every blanket in the house for two days, called work the third day, everyone had been sick store was closed. Had a tight chest and lingering cough for two months. Mid 2020 woke up with a swollen heart, years of navigating the Med Industry here in the states, officially diagnosed with brain lesions and swollen spinal cord (via fMRI) diagnosed with disautonomia/POTS by a cardiologist tilt table test and EDS symptoms loose joints, was covered in petechiae from head to toe. I guess I’m lucky to be alive, can’t work, can’t participate in my children’s lives and since people can’t SEE brain lesions and a damaged heart by looking at me, I also don’t get the compassionate response that a more visible ailment brings. So , ya, if it calms your fears to believe people are just “making it up” or “ causing their own symptoms” you keep believing that.
over-amplified like the original Covid. As I've always said, Covid and Long Covid are important cause there's something to sell, while Strumpell Lorrain ruining life of my dad since 2003 isn't, cause there's nothing to sell for it.
This is how it works.
plus, being positive for Covid with one of those ridiculous PCR tests (especially after you took three, four or even more of those ridiculous vaccines) or claiming you are affected by Long Covid, creates kind of self-comfort zone, where you can find "another of those who did the right thing", "more responsible while you aren't", "if affected me, therefore I can tell society how they must live in order to avoid re-infections bla bla bla".
In reality they failed and took it anyway, so there's nothing to teach and tell others.
Luckily, for us, we don’t need you to buy anything,! We’re all too busy dealing with these conditions to worry About someone who has the luxury of not being affected and therefore can choose not to believe it’s real. I genuinely hope for your sake that you don’t get the evidence that changes your mind because I wouldn’t wish it on anybody, not even you.
Long vax
Many didn’t have the vax but have long Covid 😞
see www.theguardian.com/commentisfree/2024/oct/30/britain-long-covid-lives-us-boosters for more
Completely ridiculous. Most long covid cases started before the Vax was available, and it definitely helped to prevent tons of cases of long covid.
@@Alice-pk9yc are you one of those few? Sorry to hear it if that is the case
@@Lessons4Lifeyep. I think there are many they just don’t it because it chases brain fog. It took me a couple of years to realise lol
#GoVegan
Then you get all the weakness and fatigue without even catching covid 😂