Long Covid in the media and social media 2023

My transcript for y'all

Male anchor: And next, we're gonna continue our series on long Covid in children. And why so many are suffering long-term disability. More than 70,000 young people are affected in this country, and yet so little is known about what causes it and how to treat it.

Female anchor: Well, in our program last night, we heard from families who feel let down by the NHS and what is available. Tonight, Stacy Poole looks at what's causing the illness and what needs to be done to help those affected.

[Sad music plays]

Stacy Poole: These are some of the faces of the thousands of children currently affected by long Covid. Children who were once happy and healthy, now living very limited lives.

Dr. Tamsen Lewis: At the moment, we've got a somewhat of an emergency on our hands with the number of people that are affected and effectively disabled with long Covid.

Stacy Poole: Dr. Tamsen Lewis knows only too well just how debilitating this condition is. She suffered herself for over two years. But she's now working to treat others and improve understanding of the illness.

Dr. Tamsen Lewis: I think there are many different systems involved and processes in the body that have become dysfunctional with long Covid. I think one of them is this allergic reaction as it were. So the mast cells in the body become super activated and this means your immune system is not acting normally. It's overreacting, and that's causing a whole host of problems including inflammation in the brain, in different organs, in the heart, in the joints, some children can develop arrhythmia. So rhythm problems with the heart.

Some people can develop this inflammation, myocarditis, in the heart or paricarditis. And also related to that is the fatigue. We're not able to generate energy in the way that we used to. And I think that is related to generalzed inflammation in the body.

Poole: With so many systems in the body affected, it's no wonder children are suffering so much. Ged Medinger has written a book investigating the causes and potential treatments. He was staggered by what he witnessed during his research.

Gez Medinger: I was absolutely stunned by just how severely some of these children were suffering. And with symptoms that adults don't always suffer from. So, extreme ability issues. The number of children with such severe muscle weakness they can't even stand up. They need walking aids, they need wheelchairs. These are issues that adults do sometimes have in long Covid but not in the same way that children do.

Poole: He's spoken to leading experts from around the world researching treatment options. But at the moment, there's no cure.

Medinger: It's so distressing. And my heart goes out to the families and to the children who are suffering from this. With still--as of yet, no hope that they can go to a doctor anytime soon and get effective treatment.

There are a few things that you can take in terms of pills that might help you manage the condition. So, for example, antihistamines: There's some evidence that these help. Anecdotally, they certainly seem to amongst the community. Some people report feeling much better when they take aspirin, and that's to do with the abnormal clotting that might be going on in the blood during long Covid, and aspirin helps mitigate that to some degree. People with acute flares may find that corticosteriods help dampen some of that inflammation.

But generally speaking, there aren't really any pills that you can take which will make you better and resolve the condition. The pills that you can take are simply there to help you manage your symptoms rather than actually resolve the core underlying cause of the condition.

Poole: The children affected say lack of treatment options and general understanding of the condition makes living with long Covid even harder, leaving them feeling isolated and forgotten.

Medinger: It really does leave you feeling alone. Because what a lot of people with long Covid find when they suffer is that the people around them don't really understand what they're going through. It's an invisible illness with invisible symptoms. And the people around you maybe don't get it.

Poole: What children and their families are calling for is more investment and more research.

Medinger: These children are our future. Why are we not desperately putting whatever we can into helping them by commissioning the research that might help us understand what's causing it and what treatments might actually offer them some relief? And at the moment, it's happening so slowly that these children don't really have much prospect of going to the doctor anytime soon and getting anything from them that's going to help.

Dr. Tamsen Lewis: We now have a huge amount of people that are affected and therefore, we need to accelerate the rate at which we are able to deliver treatments. There is an urgent need for improved care.

Poole: Stacy Poole, ITV news.

Female Anchor: And tomorrow [???] the last of our series on long Covid in children. Stacy looks at calls for more ventilation in schools to prevent pupils from being infected time and again. But with money tight, how will that work? More here tomorrow.

 

Video: Physics Girl & the Devastating Effects of Long COVID

 

Just quickly boosting coverage of what the ME/LC patients in Minnesota have been tesifiying in support for:

'Gov. Walz budget proposal seeks $6.3M for emerging long COVID crisis. The funding is proposed to raise awareness for the condition and improve the availability and quality of care'

And from national CBS News: 'MDH launches new efforts to study long COVID'

"The focus of the Guiding Council will be to develop strategies to educate providers and help them implement processes and policies that will improve access and quality of long COVID care," MDH said.

Local coverage-wise: 'Minnesota organizes long COVID response..'

'...according to federal survey data, long COVID is still causing substantial and prolonged disabilities in Minnesotans..'

I believe 4 ME/LC patients + physicians will be testifying again tonight in the MN Senate trying to move forward

 

3/1/23 by Dr. Anthony Komaroff, 'Does COVID-19 damage the brain?''

"Finally, the lingering symptoms of fatigue, pain, and difficulty thinking that can last for several years after COVID — called long COVID or post-acute COVID syndrome — may well be caused by ongoing low-grade brain inflammation caused by the virus.'

 

https://twitter.com/user/status/1641908370310328320

 

https://twitter.com/user/status/1641908376769552386

 

Long COVID exercise trials proposed by NIH raise alarm

"Advocates ask the US biomedical agency to rethink the design of its RECOVER initiative, citing possible harm and funding waste."

"As researchers find out more about long COVID, it has become clear that many people with the condition meet the criteria for ME/CFS. In a study published online late last year, researchers reported that of the 465 people with long COVID surveyed, 58% could be categorized as having ME/CFS."

"It is evident the NIH RECOVER initiative is made up of many folks who are dedicated and determined to crack open effective treatments for long COVID,” says Charles McCone, an advocate based in San Francisco who Nature identified as a patient representative for the RECOVER trial. But it is “baffling and discouraging” that the initiative is including exercise — a treatment that has been largely ineffective and often harmful for those with ME/CFS, he says."

 

Many thanks for doing those transcripts, @RedFox !

Bookmarking them for later.

 

https://twitter.com/user/status/1642071906399449089

 

https://twitter.com/user/status/1642071909348126720

 

Last night, 3 ME patients & a ME/LC expert physician testified at the Health and Human Services Finance and Policy Committee in the MN Senate.

They testified in support of Governor Walz’s Long COVID budget proposal. Their testimony was reinforced by a bevy of supportive written testimonies.

Their virtual testimonies begin at, if interested in viewing:

https://www.youtube.com/watch?v=_Bt7v3Y1PhU

2:26 minute mark: Director, Minnesota ME/CFS Alliance, Billy Hanlon
2:31: Chair of MEAction MN, Terri Wilder
3:18: President, Minnesota ME/CFS Alliance, Suzanne Wheeler
3:37: ME/CFS Clinic Minnesota, Dr. Ruby Tam

Dr. Ruby Tam's testimony:

“I am Dr. Ruby Tam, I am the founder of the ME/CFS Clinic Minnesota. I am also a Family Doctor for over 10 years. Since 2016, I have been treating patients with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. We abbreviate that as ME/CFS.

People with this disease are often dismissed by their doctors and they are told that it is all in their head, that they are depressed, or that they are lazy. Then when COVID pandemic comes, we now have a lot of people suffering from this mysterious long-term effect after catching COVID.

They cannot get out of bed. They might walk and talk like you and I do, but they cannot drive themselves. They cannot take a shower every day because it is too exhausting. It's like running a marathon for them.

COVID is one of the many triggers of ME/CFS. We still don't know why some people just cannot get over the disease. We don't have a test to confirm if someone has Long COVID or ME/CFS. We doctors are very overwhelmed by these patients because they are very complicated - we have no answer for them or cure for them.

Their families and friends are becoming their caretakers because they cannot just shop for food or do laundry. We need funding to help these people – to put food on the table, to hire someone to help them, to do chores, to educate doctors, how to diagnose the disease, and to teach them how to treat them.

We need funding, to understand what causes ME/CFS and Long COVID - so we can find cures to bring these people back to work. I need your help - doctors need your help - all the patients with ME/CFS and Long COVID - need your help. I hope that you guys are able to pass the funding that is mentioned in this Bill.

Thank you. Thank you very much."

 

Lingering symptoms suggest rise in “medium COVID-19"

But as more people contract and survive COVID-19, a clearer picture of how people recover from the illness has begun to emerge. As a result, a new term -- “medium COVID” -- is beginning to enter the conversation. It’s being used to describe the first two to three months of a protracted post-COVID recovery.

https://www.uclahealth.org/news/lingering-symptoms-suggest-rise-medium-covid-19

I'm preparing myself for Extra Long-Covid and Extra Extra Extra Long-Covid.

 

Here we go.

https://twitter.com/user/status/1641940799335325697

 

And of course Long Covid was coined for anything lasting longer than 2 weeks, which was clearly a top-down message sent throughout as this is what everyone reported. In the first 2 years that's what nearly every long hauler reported being told: it's impossible to last longer than 2 weeks. Like it was some magic number that couldn't be breached if it was repeated enough times.

Because being ill for 2 weeks is long in itself. For anyone. It's already disruptive, it's far more sick days than most people have. And not everyone has sick days. Lots of people have immovable obligations, people who depend on them.

Gotta keep moving the goalposts, clearly no one cares about consistent messaging or credibility, it's implicit and assumed to be unlimited.

 

I'm going to guess that there will be remitting-relapsing LC in the future.

 

I think it's safe to say that generally speaking, the medical profession has learned nothing of value out of COVID. Some have, on a personal basis, but it's beyond clear that the system is built to be mostly indifferent to individual issues, it serves merely to keep enough people at work and hospitals below capacity. Beyond that if they don't see it in their immediate environment, it can't have happened, didn't happen.

From Pulse, a GP magazine, written by a GP:
https://www.pulsetoday.co.uk/views/opinion/were-the-covid-lockdowns-justified/

Lives determined by some absurd suspicion, nothing but gut feeling. The comments are a mess. I'm sorry but this whole profession is a mess. The politics subreddit has better discourse than this.

 

I recall that particular GP was/is a notorious psychologiser and minimiser.

https://twitter.com/user/status/1478274667383336961


https://twitter.com/user/status/1485254691021852674

 

Bedridden ex Loose Women star Andrea McLean says she's been 'poorly for so long now'

"1. I went out with @nickfeeneycoach to support my lovely friend @brendaedwardsglobal on the one year anniversary of the passing of her son Jamal. It was a beautiful, poignant evening.

"Unfortunately, I ended up poorly in bed for three days afterwards. I had pushed myself at the gym that day, which was too much for my tired body.

"So, another episode of one step forward, three steps back."

https://www.mirror.co.uk/3am/celebr...loose-women-star-29328812#amp-readmore-target

 

Article in The Nation (paywalled):

The Long Covid Revolution by By Fiona Lowenstein and Ryan Prior

https://www.thenation.com/article/society/long-covid-disability-policy/

 

I am intrigued by these articles about the England cricketer George Garton, who was reported to have Long Covid but now appears to have been retrospectively re-diagnosed as having had a lung clot:

1) https://www.skysports.com/amp/crick...ecovery-from-health-issues-and-2023-ambitions

2) https://www.mirror.co.uk/sport/cricket/england-george-garton-long-covid-28888226?

I’m not a doctor and I don’t like speculating about any individual’s health but I would be interested to know if the narrative makes sense medically: Could a lung clot present as long covid, be missed with standard tests, resolve without treatment and then be diagnosed retrospectively (if I’m understanding the correctly)? @Jonathan Edwards

I could understand if someone had naturally recovered from long covid after being subjected to a BPS type therapy, that their confidence in themselves could be undermined. In such circumstances I could also imagine that offering a different retrospective diagnosis could be a welcome relief and boost confidence.

Certainly, if had recovered from ME/CFS within 2 years I would have been delighted to have been given a different, more respected, retrospective diagnosis – and I would still be delighted to get a different diagnosis now if it was accurate.

Whatever the truth, I’m very pleased that Garton appears to have recovered, and I have full sympathy.