Long Covid in the media and social media 2022

https://twitter.com/user/status/1519692918918770688

 

https://twitter.com/user/status/1519757172338565120

 

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

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

 

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.

 

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".

 

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.

 

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

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

 

"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/

 

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.

 

https://twitter.com/user/status/1520809361244782592

 

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

 

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.

 

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'.

 

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/

 

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.

 

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.

 

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

 

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