For those of us with any long-covid issues, also know as covid long haulers. (17 Viewers)

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When Harry Leeming developed symptoms of long Covid, he found the lack of understanding of the condition alarming. “They became so severe that I went to A&E and I was turned away, being told that I had anxiety or that it was deconditioning,” he said. “It’s been very frustrating to not be taken seriously as a patient.”

Now, he’s hoping to help those living with the condition by creating tools to track symptoms and manage activity.

The app, Visible, is currently available in beta form, and is also geared towards people living with conditions such as Myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS)…….

www.theguardian.com

Long Covid: the patient who’s made an app to track symptoms

The app Visible is also geared towards people living with conditions such as chronic fatigue syndrome
www.theguardian.com www.theguardian.com
 
SaintInBucLand said:
The funny think about smell. I still have some smell issues but I dont mind them, I can no longer smell bad smells. So people who dont bathe, rotten anything or crop dusting has no impact on me.
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Poppy said:
same thing for me. I can't smell stinky things either.. glad to see someone else has this
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Got Covid for the first time right before Thanksgiving. My taste has pretty much come back fully, but I have the same issue with stinky smells. They still don't register.
 
boutrous said:
Got Covid for the first time right before Thanksgiving. My taste has pretty much come back fully, but I have the same issue with stinky smells. They still don't register.
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First time? Man....you held out. I've had it twice already and expecting my 3rd time any week now. Married to a nurse yay!! Every time I get it I'm a week behind her.
 
What is it like to live with the chronic fatigue of long covid?

It feels like dragging your body through wet cement, says Judy Schaefer, 58, a once avid hiker who lives in Seattle.

It’s knowing that simple tasks, like showering or cooking dinner, will be exhausting, says Alyssa Minor, 36, a physiotherapist in Calgary.

It’s trying to exercise and instead, landing in the ER, says Harry Leeming, 31, of London.

Experts say the extreme fatigue experienced by many long covid patients has a name: myalgic encephalomyelitis (ME/CFS), a condition previously known as chronic fatigue syndrome. Researchers estimate that about half of people with long covid have developed ME/CFS.

There is no known cure for ME/CFS, but some experts say a complicated lifestyle change can help manage some of the symptoms.

It’s called “pacing.”

Pacing is an “activity management” strategy, which requires people to carefully limit their daily activities, reduce their energy expenditure and track their symptoms.
But pacing is difficult. It often requires scaling back on mundane tasks that most people take for granted, like rinsing dishes or chopping vegetables. And it means finding ways to reduce energy expenditure and effort — such as creating water and snack stations around the house to reduce trips to the kitchen. Even showering or picking children up from school can be debilitating for those with ME/CFS.

While pacing can make a huge difference in quality of life for someone with long covid, it also comes with a cost. Pacing often means cutting back on both work and favorite activities like cooking, walking the dog or socializing with friends. And it can represent a challenging reversal for people who, until very recently, have been accustomed to leading busy, active lives.

“I tell people to figure out what they can do every day without struggle,” explained Ravindra Ganesh, a physician and medical director of Mayo Clinic’s Post-COVID-19 Care Clinic.

People with long covid who have tried pacing say it has helped them return to a semblance of normalcy.

Daria Oller, 38, of Lincoln Park, N.J., said that after getting covid in March 2020, she felt winded all the time, and the fatigue sometimes left her unable to get up or even speak..................

 
0rion said:
First time? Man....you held out. I've had it twice already and expecting my 3rd time any week now. Married to a nurse yay!! Every time I get it I'm a week behind her.
Click to expand...


My smell has finally returned to full capacity. I realized it because I was able to smell garlic and onions for the first time in a while the other day.
 
At first I thought I had some allergies to new pet, but now my Doc thinks I have long covid. I have chest congestion and wheezing that will not clear up. But it's not all the time. It's intermittent. I also get a ridiculous amount of mucus production with it, in my chest. The other night I thought I was going to drown in it. He says it should "burn off" in a year (which means about 6 more months.)
 
More than three years into the Covid pandemic, there are a host of important unanswered questions about long Covid, which significantly limit healthcare providers’ ability to treat patients with the condition, according to US physicians and scientists.

That vacuum of information remains as much of the US has moved on from the pandemic, while Covid long-haulers continue to face stigma and questions over whether their symptoms are real, providers say.

But while there has only been a trickle of new information about long Covid, doctors say that they remain confident that researchers will find answers to fundamental questions about the disease, such as: aside from contracting the virus itself, what actually causes long Covid?

“We don’t quite have our finger on the pulse of what’s wrong, what biologically is causing it, and that’s a big problem,” said Dr Marc Sala, co-director of the Northwestern Medicine Comprehensive Covid-19 Center. “It’s hard to direct drugs or treatments without having the biological underpinnings for why someone is feeling so fatigued with exercise.”

In addition to the ambiguity around the root causes of long Covid, there are also challenges in research because of how Covid can produce so many different symptoms. The Centers for Disease Control and Prevention list includesfatigue, respiratory issues and difficulty thinking or concentrating but also states that “post-Covid conditions may not affect everyone the same way”.

“Everyone has a different constellation of symptoms,” said Dr Steven Deeks, an infectious disease specialist at the University of California, San Francisco. “Some people get better over time, some people wax and wane, some people get worse,” and so it is difficult for researchers to determine when a study should end and compare a drug versus a placebo……..

www.theguardian.com

‘We are struggling’: doctors faced with vacuum of information on long Covid

Three years into the pandemic, unanswered questions about the condition limit physicians’ ability to treat patients
www.theguardian.com www.theguardian.com
 
First time hearing about covid psychosis
====================
Natalie Barry and her husband Aaron Bazzone became infected with Covid-19 in the very early days of the pandemic in 2020.

Without much knowledge of the virus or the toll that it would take on their bodies, they decided to quarantine at their home in California until their symptoms subsided. Despite initially experiencing harsh fatigue and congestion, Bazzone improved within days.

But just weeks after his recovery, he began exhibiting psychiatric symptoms that he never had before, Ms Barry tells The Independent. Bazzone would see demons, spend the night at hotels convinced their San Francisco home was bugged, and pick holes in his face because he believed that aliens were implanting in him.

On 30 April 2022, two years after his first psychiatric onset, police knocked on Ms Barry’s door with the gutwrenching news that Bazzone’s body had been found in an isolated mountain area. He was 52 years old.

Ms Barry believes that her husband died by suicide following a long fight with a condition known as Covid psychosis.

“It was two years of hell,” Ms Barry recalls three years later as she fights back tears. “He was wielding an axe and knocking out people’s lights around their houses because he was afraid of EMF [electric and magnetic fields] he claimed came from his phone and at night he had this ringing in his ears.”……..

According to the National Library of Medicine, there is a causal link between Covid-19 infections and mental disorders. The institute cites a study conducted in China, which found Covid had effects on patients’ attention, depression and anxiety levels and potentially caused memory impairments and insomnia.

Another study by British researchers in 2021 also found that 0.42 per cent of Covid patients developed a first psychotic episode within six months of testing positive for the virus. While that percentage may appear small, it is not when put in context of the nearly 700 million Covid cases reported worldwide…….

www.independent.co.uk

Two men were consumed by Covid psychosis. Their wives say no one believed them

Two men developed psychosis after becoming infected with Covid-19. One of them ultimately received treatment after his concerns were repeatedly dismissed, while the other died of a possible suicide. Now, their families are trying to raise awareness about the rare and devastating condition...
www.independent.co.uk www.independent.co.uk
 
……An analysis of data from 9,764 participants identified 37 symptoms more often present six months or more after infection in those who caught covid, compared with those experienced by uninfected participants. A

dozen such symptoms stood out: post-exercise malaise, fatigue, brain fog, dizziness, gastrointestinal symptoms, palpitations, changes in sexual desire or capacity, loss of or change in smell or taste, thirst, chronic cough, chest pain and abnormal movements.

Other symptoms commonly reported included dry mouth, weakness, headaches, tremor, muscle and abdominal pain, fever, sweats, chills and sleep disturbances.

The researchers found that people who suffered infections in the early phase of the pandemic — before omicron — were more likely to have long covid. Among those who got the omicron variant, long covid was more prevalent among those who had been through multiple infections, compared with those who experienced just one. The researchers also found a modest reduction in long covid among those who were fully vaccinated.


Another question: How widespread is long covid?

Different studies have provided varying results. A Dutch analysis of data collected before the delta and omicron waves, based on electronic health records, found the signs of long covid in about 1 in 8 people. Back then, few were vaccinated.


The Centers for Disease Control and Prevention found in a large study covering March 2020 to November 2021 that 1 in 5 adults from 18 to 64 years old who had covid, and 1 in 4 aged 65 years and over, experienced at least one persisting health condition related to their covid infection.

The Recover report was based on self-reported symptoms and found 1 in 10 of the “acute cohort” first infected after Dec. 1, 2021 — during omicron — met the threshold for long covid. In this group, 92 percent were vaccinated.

What all these studies suggest is that the long-covid problem could be quite sizable. Ten percent of the 662 million recovered cases worldwide would mean 66 million long-covid cases in the future.

That suggests enormous economic costs are looming. Long covid might lead to changes in workplaces, economies and health care, and trigger cascading disability claims from workers who find they no longer have the stamina or good health they previously enjoyed.

Those suffering from long covid might face not only unemployment but also lost health insurance to support their treatment……..

 
Some people who experience cognitive issues after long covid continue to struggle with brain function for at least two years, a new study shows.


Researchers in the United Kingdom found that people who reported having long-covid symptoms for at least 12 weeks after being infected with the coronavirus showed reduced performance in tests for, among other things, memory, reasoning and motor control, for up to two years after the infection. Their findings were published last week in the Lancet journal eClinicalMedicine.


The researchers used an online platform to test thousands of people to better understand how covid affects brain function and how long those symptoms persist.

It allowed them “to quantify how big the effect of covid is and who was most affected,” said Nathan Cheetham, a senior postdoctoral data scientist at King’s College London, who led the study.
In the United States alone, millions of people have reported symptoms of long covid.

Long-covid symptoms can vary widely and include fatigue, respiratory and heart problems, digestive problems and neurological issues such as brain fog.

Research shows a majority of people experiencing long-covid symptoms have reported brain fog — a collection of symptoms, including impaired attention, concentration, memory and processing speed.
These symptoms can linger for weeks, months or years.


“There has been some contention about whether the cognitive effects of an earlier covid infection do actually persist,” said Anna S. Nordvig, a neurologist at Weill Cornell Medicine who founded a clinic for long-haulers with brain fog.

In her own practice, however, she has “absolutely seen these symptoms persist — unfortunately, over three years in some cases, and many times after just a mild covid infection,” she said……..

 
good article
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In 2019, I was in high gear. I had two young children, a busy social life, a book tour and a novel in progress. I spent my days racing between airports, juggling to-do lists and child care. Yes, I felt tired, but I come from a family of high-energy women. I was proud to be keeping the sacred flame of Productivity burning.

Then I got covid.

I didn’t know it was covid at the time. This was early February 2020, before the government was acknowledging SARS-CoV-2’s spread in the United States.
In the weeks after infection, my body went haywire. My ears rang. My heart would start galloping at random times. I developed violent new food allergies overnight. When I walked upstairs, I gasped alarmingly.

I reached out to doctors. One told me I was “deconditioned” and needed to exercise more. But my usual jog left me doubled over, and when I tried to lift weights, I ended up in the ER with chest pains and tachycardia. My tests were normal, which alarmed me further. How could they be normal? Every morning, I woke breathless, leaden, utterly depleted.

Worst of all, I couldn’t concentrate enough to compose sentences. Writing had been my haven since I was 6. Now, it was my family’s livelihood. I kept looking through my pre-covid novel drafts, desperately trying to prod my sticky, limp brain forward. But I was too tired to answer email, let alone grapple with my book.

When people asked how I was, I gave an airy answer. Inside, I was in a cold sweat. My whole future was dropping away. Looking at old photos, I was overwhelmed with grief and bitterness. I didn’t recognize myself. On my best days, I was 30 percent of that person.

I turned to the internet and discovered others with similar experiences. In fact, my symptoms were textbook — a textbook being written in real time by “first wavers” like me, comparing notes and giving our condition a name: long covid.

In those communities, everyone had stories like mine — life-altering symptoms, demoralizing doctor visits, loss of jobs, loss of identity. The virus can produce a bewildering buffet of long-term conditions, including cognitive impairment and cardiac failure, tinnitus, loss of taste, immune dysfunction, migraines and stroke, any one of which could tank quality of life.

For me, one of the worst was post-exertional malaise (PEM), a Victorian-sounding name for a very real and debilitating condition in which exertion causes your body to crash. In my new post-covid life, exertion could include washing dishes, carrying my children, even just talking with too much animation. Whenever I exceeded my invisible allowance, I would pay for it with hours, or days, of migraines and misery............

 
To celebrate our anniversary, my partner and I dine in a trendy London restaurant in Hackney with a Michelin star – my first time in such a place. A crispy little bonbon is introduced to us simply as “Pine, kvass lees and vin brûlé.”

I watch my partner light up, the flickering candle in her eyes, as the waiter sets the thing down. The impact of the aroma has already registered on her face. With her first bite she is transported to her childhood in Massachusetts.

“Gosh,” she gasps, closing her eyes as a New England virgin pine forest explodes in her mind. When she blinks open, returning to the here and now, she looks at me guiltily. I take a bite and wince. No coniferous wonderland for me. Just unpleasant bitterness, confined very much to the tongue.

I am pleased for her, truly. I’m a magnanimous guy. But from that moment on, the whole evening is a bit of a spectator sport and, by the end of it, I have a feeling that she is even playing her enjoyment down, muting her reactions, as if to say, “You’re not missing out.”

She finds some dishes prove more successful than others – the sweetness of cherry, an umami-rich mushroom – but I am missing out: on the nuances, the emotions, the memories.

The smell.

It’s been three years since I lost it. November 2020. I was living with three friends in a flat in Glasgow when we all caught Covid in the pre-vaccine days. Two of us lost our smell and never fully recovered it. We’re in good company.

Around 700,000 people in the UK are believed to have total smell loss caused by the virus, with around six million still experiencing some olfactory dysfunction. I estimate mine has returned by about 30%, but it’s inconsistent and often distorted.

To summarise my symptoms of anosmia, as total or partial loss of smell is known: some things have a faint odour, some don’t smell as they should and others don’t smell at all.

For example: basil smells mild but good, ground coffee and a certain brand of toothpaste smell like fish and, mercifully, sheet doesn’t stink at all. Apart from the latter, all bad news.

Sometimes, I get one glorious accurate sniff of something before it disappears. It’s as if my olfactory receptors wake up to the novelty of a scent, but immediately become bored and go back to sleep. If I cut open an orange, I’ll get a floral, citrus hit on the first inhale – oh my God, my nose has returned! But when I take another whiff, I get nothing back……..

www.theguardian.com

I lost my sense of smell after Covid. Here’s what I’ve learned about life without it

When the virus shut down my nostrils, I presumed it was a temporary issue. But three years later my food still tastes like cardboard
www.theguardian.com www.theguardian.com
 
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Any Covid long hauls have any luck with over the counter or homeopathic treatments for lung mucus and or lung inflammation?
 
Optimus Prime said:
To celebrate our anniversary, my partner and I dine in a trendy London restaurant in Hackney with a Michelin star – my first time in such a place. A crispy little bonbon is introduced to us simply as “Pine, kvass lees and vin brûlé.”

I watch my partner light up, the flickering candle in her eyes, as the waiter sets the thing down. The impact of the aroma has already registered on her face. With her first bite she is transported to her childhood in Massachusetts.

“Gosh,” she gasps, closing her eyes as a New England virgin pine forest explodes in her mind. When she blinks open, returning to the here and now, she looks at me guiltily. I take a bite and wince. No coniferous wonderland for me. Just unpleasant bitterness, confined very much to the tongue.

I am pleased for her, truly. I’m a magnanimous guy. But from that moment on, the whole evening is a bit of a spectator sport and, by the end of it, I have a feeling that she is even playing her enjoyment down, muting her reactions, as if to say, “You’re not missing out.” She finds some dishes prove more successful than others – the sweetness of cherry, an umami-rich mushroom – but I am missing out: on the nuances, the emotions, the memories. The smell.

It’s been three years since I lost it. November 2020. I was living with three friends in a flat in Glasgow when we all caught Covid in the pre-vaccine days. Two of us lost our smell and never fully recovered it. We’re in good company.

Around 700,000 people in the UK are believed to have total smell loss caused by the virus, with around six million still experiencing some olfactory dysfunction. I estimate mine has returned by about 30%, but it’s inconsistent and often distorted.

To summarise my symptoms of anosmia, as total or partial loss of smell is known: some things have a faint odour, some don’t smell as they should and others don’t smell at all.

For example: basil smells mild but good, ground coffee and a certain brand of toothpaste smell like fish and, mercifully, sheet doesn’t stink at all. Apart from the latter, all bad news.

Sometimes, I get one glorious accurate sniff of something before it disappears. It’s as if my olfactory receptors wake up to the novelty of a scent, but immediately become bored and go back to sleep. If I cut open an orange, I’ll get a floral, citrus hit on the first inhale – oh my God, my nose has returned! But when I take another whiff, I get nothing back……..

www.theguardian.com

I lost my sense of smell after Covid. Here’s what I’ve learned about life without it

When the virus shut down my nostrils, I presumed it was a temporary issue. But three years later my food still tastes like cardboard
www.theguardian.com www.theguardian.com
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Another good example of why getting the vaccine was a wise choice. I know the author caught it before
the original vaccine came out. I mentioned a co-worker of mine in one of the covid threads. She lost her sense
of smell also. She was vaccinated though. She finally recovered her sense of smell,but it took her 18 months
to do so. Her Dr. told her it probably would have been worse if she wasn't vaccinated.
 

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