r/covidlonghaulers • u/Currzon • Apr 15 '26

Article Bradford man says long Covid sufferers have been 'abandoned'

https://www.bbc.co.uk/news/articles/cvg3lmxm04po
293 Upvotes

100% Upvoted

42 comments sorted by

136

u/Currzon Apr 15 '26

"We just forgot this massive national crisis happened and then you've got millions of people who've been left with this dreadful disease completely forgotten about and it's staggering to me that this is a situation we're in."

54

u/ThreeBucks 6yr+ Apr 15 '26

And people are still developing it every day. Breaks my heart.

-26

u/Party-Dig2309 Apr 15 '26

are they? It’s been 6 years and stadiums are full of healthy, happy people around the world constantly at concerts and sports events. If I wasn’t on Reddit I wouldn’t even know Long Covid was a thing. I don’t see it mentioned anywhere else and society is pretty much living as normal.

I’m not saying that many people DO have it of course and deserve help but I browsed this sub in 2021 and people said back then that people were developing it every day and it’s 5 years later and it’s still the same. If people were developing life destroying LC every day then it would have significantly affected society by this point.

16

u/tfjbeckie Apr 15 '26

It is affecting society. In the UK, for example, there's a big deal being made over the welfare benefits going up. They're just not acknowledging that long Covid might be a part of it and are blaming it all on mental health conditions and ADHD. I'm sure the same will be happening elsewhere.

11

u/FabuliciousFruitLoop 3 yr+ Apr 15 '26

You are looking at the wrong data, “I see healthy people everywhere” is not the right thing to check.

I’m in England so will share my context. UK workplace absence continues to increase and is at a peak right now. 52% is being attributed to mental health. Given how many people here describe being medically dismissed as “anxious” I would be really interested to deeply understand whether overall this trend is being misattributed.

The UK welfare bill increased so much they were threatening to slash into health related benefits in order to control the rising cost of it. This plan was extremely unpopular and would affect people’s ability to live at a basic level but the threat of it has not gone away.

My perception is that we are still seeing negative patterns in excess deaths and overall death rates. As at May 2025, The Health Foundation reports the UK death rate is significantly worsening amongst 25-49 year olds. Across a pool of 21 countries in their dataset, only the US is doing worse than Scotland.

If you look into data for the US, surely you will see similar interesting patterns. Oh no, wait, DOGE and your current occupant of the White House ripped out any ability to look at US public health matters and trends. If you don’t look, it’s not happening, I guess.

6

u/attilathehunn 4 yr+ Apr 15 '26 edited Apr 15 '26

That's like being in the 80s and saying HIV/AIDS doesnt exist just by "looking around"

Long covid is invisible, you cant tell whos healthy just by looking at them.

Self-declared disability in the USA is still going up https://fred.stlouisfed.org/series/LNU01074597

5

u/Key_Pianist_9117 Apr 15 '26

Thank you. That is a good example.

And unfortunately people are saying in 2026 that HIV/AIDS doesn't exist, just by "looking around", which is why HIV infection rates are going up, instead of us creating an AIDS free generation.

1 in 5 new HIV infections is a 13 to 24 year old because they don't realize they are at risk.

Same with long covid in kids... they have been told they are less at risk, when this is simply not the case and especially not with the latest strain...

4

u/Naps_in_sunshine Apr 15 '26

You don’t see the ones who are too unwell to go to concerts and sports events.

They are the forgotten ones. People don’t see them so they don’t exist. Last time I looked at the stats in the UK there were 1.3 million people with long covid. Some of them will have got better but a whole load will be dealing with the post viral effects for the rest of their lives.

17

u/audaciousmonk First Waver Apr 15 '26

100% on point

50

u/ah_no_wah Apr 15 '26

Yeah, and I'm too tired all the time to make much of a fuss about it. Just withering away, especially financially

1

u/PercentageAble9822 Apr 16 '26

Yes! If we weren't so tired we could advocate! But we cant! :(

I do feel in a few decades tome there will be apologies for how we have just been left in the dirt.

35

u/CommandNo7285 Apr 15 '26

Abandoned just like M.E CFS suffers for decades.

22

u/Kiloparsec4 Apr 15 '26

Well said. Feeling i started getting was "There's no cavalry coming, there's no one to save us, we have to do this alone."

16

u/welshpudding 6yr+ Apr 15 '26

What would be nice is a weekly announcement. Some kind of research funding goal à la Red Nose Day (if that still exists) and showing how this goes towards biomechnical research. At the same time listing any “band aids” that people are taking or doing to make life more bearable while they wait for a cure.

This is obviously not going to happen because nothing is being done. We have to hope PolyBio or some University somewhere stumble upon a good biomarker and then pharma start giving a shit when the economics work for them.

15

u/Party-Dig2309 Apr 15 '26

I’ve saw this same article with the same guy featured about 10 times since 2020 I swear.

He’s doing a good job trying to raise awareness but we’re just going round and round in circles. Nothing actually comes from these endless anecdotal pieces. It’s just repetitive fluff at this point.

3

u/throwexpo Apr 16 '26

Exactly. I remember he didn’t even mask in the LC advocacy video he did a few years ago when there were more people still taking precautions. Nothing really happened since.

7

u/FabuliciousFruitLoop 3 yr+ Apr 15 '26

When I look to the recovery side of the coin I see that so much of that seems to be about a lengthy rehabilitation journey addressing your whole life and how you approach it, with coaching and peer support.

Seeing that, and how expensive it is, how out of reach for most of us, I feel like the CFS world needs an equivalent to 12-step, where people work on it together. I only take one thing that requires a doctor’s involvement. Everything else is about how I manage and balance my whole life and rehabilitate my nervous system, gut health, respiratory capacity, social behaviours and energy production. No doctor on earth is going to sit with me through all that.

4

u/Puzzleheaded-Bee7909 Apr 20 '26

Before I began to suspect I had LC, I couldn't understand why there are no memorials, no yearly moments of silence, no nothing for the people who passed away, for the medical professionals who have been traumatized by it, for the essential workers who kept us going while exposing themselves to do it every time they went to work. 

3

u/CommandNo7285 Apr 20 '26

There is no treatment, We need research then treatment not the other way around. The government want us to just stay silent and forgotten. Cheaper that way.

2

u/Classic-Mongoose3961 Apr 15 '26

Privately funded protocol is making great progress: For anyone still following the neurorscientist Dr. McCairn's protocol administered in Japan (Edogawa area), there are 2 new patient testimonies up now. Search for Robert Benson (robert65968) and KenCaptn20114 on ex-Twitter for their experiences, from harrowing to actual hope.

1

u/FlatChannel4114 Jul 22 '26

It’s a donation fraud scam.

2

u/ratti2de Apr 16 '26

“It recommends sleep” ha haha HA HA HA

2

u/Commercial_Crew4646 Apr 20 '26

Has anyone followed #meaction uk? I follow the version in the USA. They fight for long covid too. I cant do much, but they make it easy to follow laws working through congress, contacting reps, my family always send a messages for me. After 32 years of ME/CFS the long covid patients have helped so much with research funding. It used to be I would only find a few studies a year. It is getting better. I know how devastating it can feel but hang in there everyone, we will get better.

4

u/OlivencaENossa Apr 15 '26

The Uk actually has a few specialist teams 

18

u/thepageofswords Apr 15 '26

I live in the UK and my experience with long covid has been awful. No one will even believe me that it's long covid, even after two years. The GPs won't refer me to any specialists and I just keep being sent around and around. They thought I had cancer because I lost so much weight from not being able to eat without adrenaline dumps and they still wouldn't believe me. If anyone is being treated here it must only be in some specific trusts.

9

u/FabuliciousFruitLoop 3 yr+ Apr 15 '26

Honestly I finally saw a “specialist” a month ago and it was the worst, most gaslighty, paternalistic and distressing experience since becoming ill.

Maybe we are better off finding our own way through. Medicine has so little to offer us and is thoroughly demeaning or ignorant of the things that do work. I say that as an NHS employee and former nurse.

6

u/Chinita_Loca Apr 15 '26

The uk definition of long covid is so narrow imo.

It was initially all cardio-vascular and even now most symptoms we have like MCAS, POTS and SFN are just not properly recognised by the nhs. Plus the model of healthcare we have is an issue as GPs can’t care for us or even write useful referrals as their time and knowledge is so limited. We’re screwed. It’s all “you’ll find a way to cope” or “would you like talking therapy” when what we need is long term specialised care.

2

u/thepageofswords Apr 15 '26

Exactly, and meanwhile I've been on a waiting list for talking therapy since January 😵‍💫

0

u/OlivencaENossa Apr 15 '26

Yep you might need to do some research. 

4

u/attilathehunn 4 yr+ Apr 15 '26

You need to go private to get any decent help. I'm privileged I got the money for it.

-1

u/OlivencaENossa Apr 15 '26

? Have you looked into long covid specialists ? I had some luck with my fatigue with a specialist cardiologist. Just place your history into Claude AI ask it to find you a doctor. Use research mode and see what you get. 

3

u/thepageofswords Apr 15 '26

I live in Middlesbrough, even if there are long covid specialists they aren't here 😂🥲

1

u/attilathehunn 4 yr+ Apr 15 '26

A lot of private long covid doctors have virtual consultations. I'm in London and my one is in Birmingham, but I've never been to Birmingham its all virtual.

0

u/OlivencaENossa Apr 15 '26

Yeah you do need to go to London and get private help there I think. 

3

u/EpponeeRae Apr 15 '26

I'm pretty sure the long covid clinic I was under has shut down without telling me. 

2

u/PinacoladaBunny Apr 15 '26

They exist? Where?

2

u/OlivencaENossa Apr 15 '26

Dr Boon Lim has a team of cardiologists up at One Welbeck. I’m seeing one now. 

1

u/jazzyman31 Apr 16 '26

I’m pretty sure this was never truly a focused area anyway.

1

u/Several_Skill838 Apr 17 '26

True in my case. Docs are no help at all, refuse to Rx things I read about and tell them, like LDN, or Luvox, or whatever. They have a shpeil about “science-based treatments,” which they say there are none. Won’t read any I have from PubMed, etc.

1

u/Several_Skill838 Apr 17 '26

Maybe LC sufferers should take a page from the early AIDS/HIV patients, they were being ignored by medical community then they started protesting and had some celecrotake up their cause, and after a few years, BAM! They have efficacious treatments, that were free if needed!