News about Long Covid including its relationship to ME/CFS 2020 to 2021

REUTERS The faces in the fog of 'long COVID'

There's no mention of ME in the article.

Quote:

“I feel like my 91-year-old mother physically,” says Dominguez, a mother-of-two and a social worker specialising in disabilities, who has been on medical leave since November.

A recent survey by the Spanish Society of General and Family Physicians (SEMG) - which interviewed 2,120 people of whom 1,834 had symptoms compatible with the disease - found the typical profile of a post-COVID syndrome patient was a 43-year-old woman with 36 symptoms on average.

While severe COVID-19 infections are more frequent in men, long-haul COVID seems to affect women more - they accounted for around 80% of the cases in the SEMG study.

Eight women, and two men, spoke to Reuters about their experience of long-COVID, and sat with a photographer for portraits shot through a “fog” of blue plastic to visualise how the condition made them feel.

 

So good to see this important issue covered in TIME. Excellent advocacy once again from Wilhelmina Jenkins!

TIME: Black Women Fighting For Recognition as Long COVID Patients

Quotes:
It took five years of chronic pain, nausea, fuzzy thoughts and a cruel mixture of fatigue and insomnia for Wilhelmina Jenkins to be diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). But even after she received that diagnosis, in 1988, she faced her fair share of doubters—not because her symptoms didn’t meet the bar for diagnosis, but because she is Black.

At that time, researchers mistakenly thought ME/CFS, a syndrome that sometimes follows a viral illness and leads to long-term pain, fatigue and other symptoms that can last decades, primarily affected upper-class white women. It was pejoratively labeled “yuppie flu,” and many doctors believed it to be psychosomatic.

....

When COVID-19 hit last year, and case clusters began popping up in Black communities, Jenkins, now 71, braced herself for another fight. She knew that, since ME/CFS can follow viral illnesses, COVID-19 could be a mass trigger. She also knew that, particularly in communities of color, many patients would have no idea why they weren’t getting better after a couple weeks. “I knew they were not going to be reached,” she says.

She ended up being right on both counts.

 

Maybe should tag her? @Wilhelmina Jenkins

 

Thank you!

 

Time has shared the article on social media. They have 12 million followers on FB and 8 million followers on Twitter, so do give a thumbs up and retweet those who can

 

Science Friday What Does The Future Look Like For COVID-19 Long-Haulers?
Interview with Walter Koroshetz from NIH and David Putrino from Mount Sinai. Duration 37 minutes.

Koroshetz mentions ME/CFS a couple of times. That Long Covid is an opportunity to learn more about ME as well.
As far as I understand there will be a transcript of the interview within a few days, so will share quotes concerning ME then.

All in all a good interview. David Putrino talks about rehabilitation in Long Covid, and seems to be approaching it with caution and with focus on dysautonomia.

 

(Pay-walled)
No mention of ME/CFS or even I think post viral illness

Irish hospital doctors on long Covid: Athletic people are ‘inordinately affected’
https://www.irishtimes.com/life-and...ic-people-are-inordinately-affected-1.4530174

The title gave me hope but unfortunately this is what is said on that:
---

---
Also a low level of functioning as measured by the 6-minute walk test
is put down to deconditioning:

 

A year in and the fact that this nonsense is still believed is such incredible failure. This is way past ordinary failure, it frankly stretches disbelief that anyone can be so clueless about their job. Quacks clearly echo best in echo chambers.

Seriously if acute medicine were this bad death rates would have actually increased. The feedback mechanism of outpatient care is completely broken.

 

I like it how type A personality is a predisposing factor, with too high expectations of their own recovery time. But also another predisposing factor is the type who often visits the doctor, thinks a lot about their symptoms and has apparently too low expectations of their recovery. I always wonder what personality type is NOT a predisposing factor because you can put an awful lot of people in these two categories if you really want to.

 

Merged thread

The Irish Times: Irish hospital doctors on long Covid: Athletic people are ‘inordinately affected’
Irish hospital doctors on long Covid: Athletic people are ‘inordinately affected’ (via @IrishTimes) https://www.irishtimes.com/life-and...ic-people-are-inordinately-affected-1.4530174

Dr. Killian Murphy seems to throw out every cliché imaginable.

 

"You want to recover too much and too fast and that's why you didn't recover, you believe in yourself too much"
"You believed you couldn't recover and that's why you didn't recover, social media scared you and now you're all somatising and stuff or whatever"

It's basically choose your truth. Nothing matters, accountability doesn't exist so you get stuff like this. You have this because you're too tall. "But I'm very short." Well you have this because you're too short. Happy now? You got an explanation.

I just saw passing an abstract from a Wessely paper about how to bring up conversion disorder to patients, balancing the risk between losing the patient's trust and telling them the truth, clearly unaware that there is no quicker way to lose someone's trust by blatantly lying to their face. Of course they are Dunning-Krugerly unaware that they are lying, which only reinforces this junk.

When physicians tell these things to patients they genuinely have no idea that they instantly lose credibility. But losing credibility means nothing to them, it's statutory credibility, it doesn't affect them at all, never gets reported, let alone recorded. Patients just give up, reinforcing the misbehavior. Then studies trawl from records filled with misinterpretation and it goes on for generations, unchanged.

 

Those damn lazy perfectionist neurotic type A personalities, always on the go while constantly stopping to monitor symptoms, never thinking of themselves other than being obsessed with their little person (ME ME ME!).

Honestly I'm pretty sure someone fitting all the criteria variously thrown out carelessly by BPS fanatics would probably end up in a psychiatric facility and it wouldn't even be wrong. They don't just create a strawman, it's basically the whole Wizard of Oz cast embodied in the same person. They actually created strawpeople, plural, who actually are the same person.

 

Sadly this is paywalled but I would really love to read this. Does anyone have access the text?

 

The Guardian: As the UK inches towards normality, those with long Covid must not be forgotten

From the vaccine rollout to the reopening of pubs, this stage of the pandemic could be characterised as the hope of a return to normal. I can’t help but think of one group who are struggling with that: the estimated 1.1 million people in the UK who, according to the ONS, have been suffering from long Covid recently.

Long Covid is defined as experiencing symptoms four weeks or more after first getting coronavirus. It’s important to stress that not everyone who experiences long Covid will go on to have long-term chronic illness, but almost 700,000 people said that their symptoms were adversely affecting their day-to-day activities, and 70,000 people have had it for at least a year.

The condition is also a wide umbrella term: the most common symptoms are fatigue, breathlessness and pain, but patients report others including partial hearing loss and numbness. And yet the message of the ONS figures is dauntingly clear: hundreds of thousands of people in this country are experiencing debilitating illness, all at once, with very little idea how to treat it, or when or if it will end.
....
Much of the commentary around long Covid suggests this is an entirely new phenomenon, but the truth is millions of people have suffered from similar chronic illnesses for decades with little support. As the conversation around long Covid grows, we must ensure any help that comes is offered to those with all chronic illnesses. This is about attitudes as well as resources. The National Institute for Health and Care Excellence’s recent announcement that people with chronic pain that has no known cause should not be prescribed painkillers, is an insight into how patients with invisible or undiagnosed conditions are too often disbelieved and denied proper treatment.

 

Sorry Grigor, normally they let you read a few articles for free every week, but this one seems to be subscriber only.
Here are some excerpts :

 

In the UK, when we say 'must not be forgotten', don't we usually/always mean 'found, buried, and then not mentioned in public apart from on one day a year'?

 

Just been listening to BBC radio 2 discussing long-covid; Strain was interviewed.
Really annoying that no mention of ME; Jeremy Vine said, it reminded him of Lyme disease.
Again framing it as a 'new' disease, yet using all the ME terms
Particularly poignant, two people talking about kids with it, one also diagnosed with an eating disorder, (see the new thread on Children with v severe ME and malnutrition).

 

Thank you so much for sharing. Not the best article but good to read this!