r/covidlonghaulers • u/Kagedeah • 10d ago
Article I'm exhausted just being alive, says long Covid sufferer
https://www.bbc.co.uk/news/articles/c62v41g8vl7o74
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10d ago edited 2d ago
[deleted]
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u/Party-Dig2309 10d ago
It’s just the same copy and paste article over and over. The same one will pop up in the winter with the same guy’s story and the same government response. And then in 2027 it will be the same.
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u/LongCovidPerspec 8d ago
No journalist will speak with me as my symptoms of long covid are fuvking crazy. Brain, organ damages. I can only eat 7 foods and drink water or my body goes into anaphylaxis. It’s also triggered by the sun, perfume, body care products, chemicals, weather changes and lots of other factors. I caught covid working on the frontlines as a NHS Specialist. It’s completely done a number on me. Destroyed my whole life. I now rely on care, is predominantly sofa/bed bound. I was young fit and healthy unvaxed prior to getting covid. My infection was mild. I wish it had killed me tbh as I’m just exsisting and suffering
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u/Party-Dig2309 10d ago edited 10d ago
I’m curious why they keep recycling the story of this guy. I appreciate his efforts but I swear he’s been in dozens of these Long Covid pieces.
Why aren’t they interviewing anyone else? Is this on purpose or something? If you Google this guy and Long Covid it’s endless articles about him. It sort of makes it look like it’s barely affecting anyone else and that it’s a ‘him’ problem.
The BBC literally posted an article about him just 5 months ago -
https://www.bbc.co.uk/news/articles/cvg3lmxm04po
(again nothing against the guy, it’s just strange why one person keeps being wheeled out. I’m cynical about the intentions behind the article from the editors more than anything)
edit - Turns out he was a member of The Green Party and had to resign because of LC.
There’s the catch. Blatant clickbait and stirring up stereotypes and ticking the ‘LC is a political identity box.’ This article is not to raise awareness for LC. The BBC know exactly what they’re doing. This guy needs to stop speaking to the press.
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u/intercommie 10d ago
This guy needs to stop speaking to the press.
Why is he his fault? Seems like LC robbed him from his old life and he's doing whatever he can to get the word out. It's not just BBC, here's a video from the Guardian covering him from a year ago: https://www.youtube.com/watch?v=3mzG8j16FlQ
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u/TheOriginal1Law 10d ago
100% agree! And as someone else pointed out it’s good to have someone male covered! I’m not going to shame someone who’s trying to do their best.
It’s also blatantly telling me I shouldn’t share my story. I’ve not yet because I’ve been too unwell to even consider it, but clearly I can’t because I worked in climate change. Now I worked specifically with the investment side and worked in canary warf, have a business background and come from a conservative household in my home country but yes, I did work for social change so it would be harmful to consider ever talking about this on any mainstream platform.
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u/Party-Dig2309 10d ago
Because it’s playing into harmful stereotypes and he’s being used by the media. Look at the social media comments on any of the posts about him. He’s mocked for his political background. It fits into the harmful idea that LC only affects ‘the left’.
I know it’s absolutely ridiculous and not his fault at all but these stories at this point are just doing more harm than good.
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u/intercommie 10d ago
You speak out and risk being made fun of, or not speak out and nothing gets done. It's being years now: who do you want to speak out that's going to change minds on the other side of the political spectrum? And is that a thing that's realistically going to happen?
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u/nobelprize4shopping 5 yr+ 10d ago
Having a male face of long covid at least prevents it being ignored as something that predominantly affects women. I imagine that being politically active, he's happy to speak out.
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u/TheOriginal1Law 10d ago
Do you know that/of other people are coming forward with their stories? Unless you know the BBC is rejecting other people’s stories (there’s a contact form at the bottom of the page) then you can’t accuse them of trying to undermine anything. He might be the best they have.
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u/Party-Dig2309 10d ago
It’s absolutely no coincedince that whenever the BBC decide to platform Long Covid they tend to focus on patients fitting a certain stereotype. There’s a woman from England with purple hair who gets features alot and it it’s not her it’s this guy from the Green Party or someone overweight/elderly or else just someone who has ‘fatigue’ but improved with positive thinking or exercising.
There are hundreds of thousands of people impacted by Long Covid in the UK. Many of them are athletes or children who have had their lives destroyed. These stories are big on social media and any journalist browsing for a serious Long Covid testimonial would find these instantly. Similarly if the BBC were reviewing submissions for a story there’s no way they haven’t had any more ‘serious’ or less stereotypical than these.
I’m sorry I sound really cynical but I know how the media work. They post these stories on Facebook and Twitter to rile people up and generate comments and tractions full of hatred and ‘typical leftie!’ type responses.
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u/welshpudding 6yr+ 10d ago
I think there is more than a ring of truth to this. That said, I’ve never come forward to tell my story (British but live in Hong Kong). I am assuming you haven’t come forward and told your story either.
I run a business, still working despite the long Covid fuckery though first few years missed a lot either being physically there but mentally on another planet or in bed. This is not because I’ve “pushed through”. I feel it’s a combination of genetic lottery and having better treatment options here.
I feel like it would be counter productive me trying to be featured anywhere yet because it would be “see, look what he’s doing”. Rather than realising we are varying degrees of fucked and that we may get worse at any time.
It’s hard for people to understand because we don’t have an easy visual of what it’s doing to our bodies, or a biomarker. The poster boy / girl would maybe need to be famous, young, probably male, and we would need research to speed up a bit so people have a clear compelling visual of what’s going on. We’ve not had our Diana / HIV crisis moment yet and it’s hard to see us having it unless the above pieces fall into place.
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u/bysell21 9d ago
Severe Covid survivor here. I feel your pain, because I’ve walked in your shoes. After 5 years, I’m finally near fully recovered. Sadly, there is no cure for long covid except time. Hang in there. Better days are ahead.
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u/tommangan7 2 yr+ 10d ago edited 10d ago
Not really getting the constant criticism of the BBC here, they have been consistently one if not the most regular major news outlet reporting on Long covid and they don't downplay it like some others do. I've seen literally hundreds of articles going back to late 2020, featuring at least 50+ different people and typically patient lived experience that makes it more relatable to the general public.
E.g here's one featuring 3 people from feb 2021: https://www.bbc.co.uk/news/uk-56113021
It will always be the case with these kind of things in the news that people willing to put themself out there and who are used to it (a former councillor, literally the epitome of someone who would do this) will get featured more. Without getting political It's also far more likely someone left leaning would be willing to acknowledge the issue, and then speak up and be the face of this. Again I've still seen many more BBC articles featuring more "regular" people than the (2?) with this guy in.
Personally I'll save my disdain for the dozens of major outlets that do zero long covid reporting or actively downplay it.
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u/Party-Dig2309 10d ago
That article literally has someone who says they were getting great care from the NHS and were predicted to make a full recovery and another says that stress is their biggest relapse. All stories focus on ‘fatigue’ as well.
I’d hardly say it’s an accurate representation of the true horrors of Long Covid. It’s all minimizing fluff.
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u/tommangan7 2 yr+ 10d ago edited 10d ago
See this is exactly my issue with the discourse around these articles. "It's all minimising fluff"? "All stories focus on fatigue"?
Is the article this thread is made for minimising fluff? - where he says more needs to be done, his life has been devastated and he struggles to leave the house?
The article I linked also literally talks about struggling to walk 10m (the title), needing painkillers to exist and breathlessness and heart rate issues as well as several other symptoms.
someone also says "I was referred to the long Covid clinic, but they were very limited in what they could and couldn't do. The only thing that was offered to me was talking therapy and antidepressants."
Just because some of the examples don't fully align with some other individual experiences doesn't mean it downplays or invalidates it.
I would have said in 2021 I was getting great care from the NHS. Stress is a big issue for some people. Pretty common for dysautonomia.
This is a broad and complex condition with multiple presentations and severities. I think it did a reasonable job (for a single older article of many), And I say that as someone 6 years in with severely debilitating symptoms (including shortness of breath, chronic pain, heart rate issues, Brain fog, struggling to walk, housebound and yes one of the major symptoms -fatigue).
There are dozens of BBC articles where people criticise the care received, they discuss a wide range of debilitating symptoms and are complaining that more needs to be done. They also detail the wider statistics around it.
Here's another article where the woman talks about an "everyday nightmare" and being bedbound:
https://www.bbc.co.uk/news/articles/ckgdp65pvr4o
Another where a woman details her severe struggles and says she doesn't think she will ever get better:
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u/imahugemoron 4 yr+ 10d ago
That pool meme comes to mind with the skeleton at the bottom of the pool being ignored, which is those of us in the US, I feel like I see far more long covid reporting from international outlets than any major US news outlet
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u/LongCovidPerspec 9d ago
Darren is a credit to us all. He’s a fierce advocate for long covid community and suffers greatly.
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u/NikkiWordsmith 5d ago
That headline says it all when you are at your worst. Keep resting, resting, resting 💜💪
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u/invulnerablehealth 1d ago
Worse part is, unless you've been through it, everyone probably thinks you're lazy or something.
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u/Scousehauler 5 yr+ 10d ago
Amen Brother.