Long Covid in the media and social media 2022

[rvallee]

 

[rvallee]

 

[John Mac]

https://www.dailymail.co.uk/health/...ing-lullabies-easier-breathe-study-finds.html

Want to beat long Covid? Try singing Twinkle Twinkle Little Star: Sufferers who sing lullabies find it easier to breathe, study finds

• 150 patients took part in a trial which saw half sing lullabies with opera singers
• The trial, with the English National Opera aimed help long Covid patients recover
• People in the singing group recorded less breathless and better mental health
• As of January there are an estimated 1.3million long Covid suffers in Britain
• Experts say it is critical evidence-based treatments are found for the condition

Thread about this study here:
An online breathing and wellbeing programme (ENO Breathe) for people with persistent symptoms following COVID-19:.., 2022, Phillip et al

 

[Jacob Richter]

The Economist leads its mailshot today with a new article on Long Covid:

www.economist.com/the-economist-explains/2022/04/27/what-we-know-and-do-not-know-about-long-covid

I can't currently access it but would interested in opinions from those who can.

 

[Mij]

https://www.theglobeandmail.com/canada/article-long-covid-health-care-racial-bias-diversity/

"By the time of the heart checkup, several doctors had dismissed her concerns as being “all in her head.” It felt validating to hear someone acknowledge something was wrong.

But that feeling was short-lived. The cardiologist didn’t agree that long COVID was to blame. Instead, she said, she suspected Ms. Thompson’s heart issues were being caused by cocaine use. Ms. Thompson, who is Black, was stunned by this assumption – she doesn’t use drugs, or even consume alcohol or coffee.

In the months that followed, she learned of other Black women who had been similarly doubted or stereotyped when presenting with long COVID symptoms, like joint pain and fatigue. “You were very much in the category of, ‘I’m sure they’re just trying to get drugs’ or, ‘They don’t want to go to work, you know,’” Ms. Thompson said.

Stories like Ms. Thompson’s, of racial bias in the medical system, are driving some researchers to call for more diversity in studies of COVID-19’s long-term effects".

 

[Midnattsol]

Norwegian article, a personal trainer that got a mild case of covid, and discovered that a month later she did not perform well in her workout sessions and this has continued. While I didn't like the article as I feel it has a positive spin for no reason, it's nice to have another story that shows pwLC is not deconditioned. The woman in the article just ran a half marathon at a new personal best, but has lingering symptoms.

The researcher in charge of the Norwegian corona study says it's important to listen to the body and that feeling poorly means one has done too muc. Unfortunately he also emphatizes that it's healthy to exercise despite having long covid, without any caveats for people who feel poorly just from daily living..

Her fullfører Synneve halvmaraton tross senplagene fra korona
Here, Synneve completes the half marathon despite the late plagues from the corona

 

[Art Vandelay]

What a shock:

Long COVID Patients Say Doctors Are Ignoring Their Symptoms

Sydney, 22, was told to “suck it up” by a nurse. A cardiologist told George, 37, that he was “imagining things” after rushing to the hospital two years after his initial infection with what he thought was a heart attack. Doctors told 38-year-old Andrea to “not think illness thoughts” when trying to exercise through her severe fatigue. Then there’s Michele, 48, whose doctor doesn’t believe in long COVID because he himself recovered with no lingering issues.

This is a bit rich:

Dr. Benjamin Abramoff, director of the Post-COVID Assessment and Recovery Clinic at the University of Pennsylvania Perelman School of Medicine, said part of the challenge with long COVID is that “we’re all kind of learning on the fly, with guidance coming out on a day-to-day basis.
...
He said this kind of medical dismissal was more common earlier in the pandemic when less was known, according to discussions with his patients, but that “a lot has changed over time as awareness has grown of long COVID.”

Medical dismissal of post-viral illness is nothing new. Had they believed and listened to ME/CFS patients over the past 40 years, none of this would be happening.

 

[Sly Saint]

I was a marathon runner with killer biceps – long Covid has stopped me in my tracks | Rose George

I suppose I am lucky that I have long Covid now, when science believes in it and there are long Covid clinics. The NHS Covid recovery site must be helpful for many, and it discusses PEM (post-exertional malaise) which is the delayed-onset crash after exercise and is one of the most frustrating mysteries about any post-viral condition: you exercise and feel fine, and two days later you suddenly don’t. But the NHS site and most others seem meant for people who can’t walk upstairs, not ones who wonder whether they will be able to run in heart zone 3 again, or ever do more than three miles without fearing the consequences; the ones who are not disabled but not themselves.

I turned, of course, to Google. I learned that people with chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), have been floored by PEM for decades and only now are they being believed.

https://www.theguardian.com/commentisfree/2022/may/01/marathon-runner-long-covid-athletes

I looked on the NHS Covid recovery site to see what they say about PEM. They use 'Post exertional Symptom exacerbation':

A worsening of your fatigue after exertion
It is common to experience tiredness and fatigue during and even after an episode of illness. Fatigue for weeks or months after a serious illness can be quite normal. People who are recovering from an illness often report feeling a little better each day, it can take time to fully recover. With Long COVID you may feel fatigued after activities which were not previously difficult to cope with and this can affect your quality of life and ability to function as you did previously. This is more likely to occur at the end of the day or at the end of a busy week.

Sometimes people experience a number of other symptoms worsening after physical stress. This could include brain fog, muscle aches or headaches alongside increased fatigue. Clinicians may call these “post exertional symptoms”. They are not in themselves dangerous but can affect your quality of life.

https://www.yourcovidrecovery.nhs.uk/managing-the-effects/effects-on-your-body/fatigue/

 

[Mij]

"Robson said other post-viral syndromes like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) can be instructive in what living, working and seeking supports is currently like and can be improved".

“It seems to be that same biological connection to a viral infection and similar problems in terms of EI being too short, (Canada Pension Plan disability benefit) being hard to get and really discourages you from working – even if and when you could – long-term disability insurance providers who have disbelieved claims in an effort to restrict access to benefits.”

https://globalnews.ca/news/8678070/alberta-long-covid-part-3/

 

[rvallee]

What a shock:



This is a bit rich:



Medical dismissal of post-viral illness is nothing new. Had they believed and listened to ME/CFS patients over the past 40 years, none of this would be happening.

Long haulers are still just as dismissed as ever. From patient forums I see very little change, nothing substantial anyway, since the only relevant substance is in the form of useful treatments, and there still aren't any. Real research efforts haven't even begun yet, the whole system is still at the "exercise and happy thoughts" phase and unable to move from there.

So once again we have this dynamic where progress that hasn't even been close to be achieved, is now said to be mostly achieved, in the opinion of physicians, completely contradicted by reports from the patients, but that doesn't matter. No need to do something if it's already mostly done. The same dynamic, literally fake progress.

We saw decades of this: "Things are changing for people with ME". No, they still aren't, and one major reason is people falsely declaring that their job is done even though they literally accomplished nothing. Even in politics this eventually gets old.

Theranos eventually collapsed because people expected results and people counted. The fraud of the BPS model of ME is far worse precisely because no one expects actual results, and fraudulent (or misguided, whatever I hold experts to a higher level) claims of progress are actually praised and awarded.

When failure is praised as success, hard to miss how we got so much failure.

 

[Amw66]

 

[John Mac]

https://www.expressandstar.com/news...fire-fighters-given-treatment-for-long-covid/

West Midlands firefighters given treatment for long Covid with 'astonishing' results

Firefighters with long Covid are benefitting from special treatment for their symptoms, with one staff member describing the results as "astonishing".

Staff members have been given access to hyperbaric oxygen therapy at the Midlands Diving Chamber in Rugby, visiting the facility for 90-minute sessions once a day for three weeks.

During the therapy, patients are seated in a specialist six-metre-long chamber in which the pressure is raised - to the equivalent of 14 metres below sea level - before they breathe in oxygen via a mask.

The higher pressure means more oxygen gets into the blood and to cells that need repair.

 

[Hutan]

I was a marathon runner with killer biceps – long Covid has stopped me in my tracks | Rose George
https://www.theguardian.com/commentisfree/2022/may/01/marathon-runner-long-covid-athletes

I thought that was worth reading; a very good account of mild Long Covid.

There was the observation that a lot of athletes are getting Long Covid. Which raises speculation: Did exertion while ill increase their risk of LC? Did their high level of fitness somehow make their immune system too aggressive?

I suspect it might just be that the athletes have been used to operating with a high level of energy expenditure and, now that their energy envelope is smaller, they can't, and they notice the difference. Whereas the couch potatoes might have also lost capacity, but, because they don't routinely push to the limit of their capacity, they are much less likely to be able to be confident that something has changed.

 

[Andy]

I thought that was worth reading; a very good account of mild Long Covid.

There was the observation that a lot of athletes are getting Long Covid. Which raises speculation: Did exertion while ill increase their risk of LC? Did their high level of fitness somehow make their immune system too aggressive?

I suspect it might just be that the athletes have been used to operating with a high level of energy expenditure and, now that their energy envelope is smaller, they can't, and they notice the difference. Whereas the couch potatoes might have also lost capacity, but, because they don't routinely push to the limit of their capacity, they are much less likely to be able to be confident that something has changed.

Or it could be that a dramatic sounding difference makes for a 'better' headline and story. I would doubt that a story with the headline "Ordinary person who rarely exercises stopped in their tracks by Long Covid" would be as readily distributed and read.

 

[Mij]

I suspect it might just be that the athletes have been used to operating with a high level of energy expenditure and, now that their energy envelope is smaller, they can't, and they notice the difference. Whereas the couch potatoes might have also lost capacity, but, because they don't routinely push to the limit of their capacity, they are much less likely to be able to be confident that something has changed.

Resting can make some people feel fairly normal when they're recovering from PVF. That was my experience. I rested for 5 1/2 years and never experienced PEM. I made one mistake by working out on my stair master and couldn't walk for 6 months. I told myself that I better not exercise or do too much and only started walking slowly years later to see how I felt after I started running again and it all went to hell from there- I reached the 'point of no return'.

 

[Andy]

Pulse Today: Management of long Covid in primary care

"Common presentations of post-Covid-19 syndrome in primary care

• Fatigue and post exertional symptom relapse- inability to do anything other than rest is common
• Breathlessness due to cardiac or respiratory disorders, dysfunctional breathing and dysphonia
• Tachycardia and autonomic dysfunction including postural tachycardia syndrome (PoTS)
• GI disturbances such as diarrhoea
• neurological presentations such as myopathy, neuropathy and cognitive impairment (‘brain fog’)
• dermatological symptoms such as urticaria and angioedema
• psychological and psychiatric presentations such as anxiety and depression as primary presentation, or secondary to the adjustment to ongoing effects from an acute illness

PoTS diagnostic criteria: Sustained increase in heart rate of 30 beats per minute (40bpm in teenagers) from lying to standing associated with symptoms of PoTS."

https://www.pulsetoday.co.uk/covid-...rch/management-of-long-covid-in-primary-care/

 

[Kalliope]

Ed Yong recently had a lecture at Yale Law School titled: Ed Yong: Normal Led to This: On Two Years of Covering The Pandemic

It's now available. He gives as expected a great talk covering main topics of the pandemic and in particular how USA has delt with it. Long Covid is not a big part of the talk.

ME is mentioned briefly at the beginning at approx. 6.30 min:
- Long standing dismissal of chronic post viral illnesses as ME, meant that when many patients developed the symptoms that we now know as Long Covid, doctors had very little to offer them expect for dismissal and gaslighting.

There is some noise particularly in the start, then it improved.

 

[rvallee]

Pulse Today: Management of long Covid in primary care

"Common presentations of post-Covid-19 syndrome in primary care

• Fatigue and post exertional symptom relapse- inability to do anything other than rest is common
• Breathlessness due to cardiac or respiratory disorders, dysfunctional breathing and dysphonia
• Tachycardia and autonomic dysfunction including postural tachycardia syndrome (PoTS)
• GI disturbances such as diarrhoea
• neurological presentations such as myopathy, neuropathy and cognitive impairment (‘brain fog’)
• dermatological symptoms such as urticaria and angioedema
• psychological and psychiatric presentations such as anxiety and depression as primary presentation, or secondary to the adjustment to ongoing effects from an acute illness

PoTS diagnostic criteria: Sustained increase in heart rate of 30 beats per minute (40bpm in teenagers) from lying to standing associated with symptoms of PoTS."

https://www.pulsetoday.co.uk/covid-...rch/management-of-long-covid-in-primary-care/

The ME omerta continues, zero mention. They actually list PEM first, without a single mention of ME. Amazing. Orwell was so wrong about having to rewrite the official record. As if people actually care what it says.

 

[Mij]

And yet when you Google PEM all that comes up is ME/CFS.

 

[John Mac]

https://www.bloomberg.com/news/feat...in-kids-has-effects-that-last-beyond-hospital

The Children Left Behind by Long Covid
As the world pretends the pandemic is over, at least a half-million children in the U.S. are struggling with the mysterious disease.

Lincoln Brockmeyer folds his lanky 6-foot-4-inch frame onto the examination table as he explains to the pair of doctors that he feels tapped out, his energy totally sapped. Some days, he says, he needs a nap to make it through the afternoon. Worse than the bone-tired feeling he can’t seem to shake is the constant pain in his legs and the sensation that each one weighs a thousand pounds. He tells the doctors that he’s lost weight—at one point he was down 30 pounds, to 148. He can’t run without getting lightheaded, he says, and every time he stands up he gets deep purple spidery veins on his arms and legs. He loves playing basketball, but not when his body hurts like this.

“I’m trying to stay optimistic,” he says when the doctors inform him he’s got all the signs of long Covid. They’re telling him this in March, and if he wants to get better he needs to take it easy. That means no basketball for a while. Lincoln hates hearing this.