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

Hey, cheese it you guys! The jig is up!

 

Rather poor article that is very confused over why GET is prescribed in this context and does everything it can to avoid mentioning us while obviously referring to us, while completely missing the point about who is this patient population who cannot exercise and happy-thought out of this. The learning process is abysmally slow, most of this stuff was obvious to many of us a full year ago, the "experts" are still far behind the patient community and going at it too slow to catch up.


The mystery of ‘long COVID’: up to 1 in 3 people who catch the virus suffer for months. Here’s what we know so far

https://theconversation.com/the-mys...r-for-months-heres-what-we-know-so-far-161174

 

https://committees.parliament.uk/writtenevidence/21844/pdf/

 

https://www.onlinecjc.ca/article/S0828-282X(21)00287-7/pdf

 

The continued focus on fatigue is a problem IMO. It reduces the whole issue to a sound-bite.

More nuanced neurological understanding would be helpful of course. And in it's absence I'm not entirely sure what sound-bite would be more palatable but this fatigue meme is unhelpful.

 

SVT News has published an informative article about long covid, no BPS

(SVT is the Swedish national public television broadcaster.)

Tre myter om postcovid
https://www.svt.se/nyheter/lokalt/vastmanland/tre-myter-om-postcovid

Here's what the text in the video says, loosely translated:

Myth 1: “Only people who were severely ill with covid-19 get postcovid.”
Compared to the group who becomes severely ill (men, people with overweight and older people), it is more common that young, previously healthy women get postcovid.

Myth 2: “Postcovid doesn’t exist.”
Several international studies have recently proven that postcovid exists. Doctors too have been able to se actual changes through xrays of the heart and lungs of postcovid patients. Tests have shown impaired kidney function and oxygen uptake.

Myth 3. “Everyone gets the same type of symptoms.”
There are many different symptoms among the group who get postcovid. For some only their sense of smell is affected, others get chronic pain in feet and hands, and some get brain injuries or lowered oxygen uptake. Some will need care for a long time, while most get mild temporary symptoms. The symptom variation is big, and doctors believe that in the future the postcovid diagnosis will be divided in several subgroups, based on symptoms.

 

We can change the language of calling it 'fatigue' and replace it with autonomic impairment? There are treatments available for this. Many of us would be a lot less disabled if this was properly diagnosed and treated.

 

https://twitter.com/user/status/1402275962176278530


https://twitter.com/user/status/1402290375692369928

 

Scientists begin to unravel the mysteries of the coronavirus and brains

https://www.washingtonpost.com/health/2021/06/07/covid-are-brains-affected/


Hello microglia our old friends....

The second issue, appearing in the brainstem, cerebellum and other areas, involved swarms of immune cells. Those cells often converged around dead or dying neurons. “They’re actually attacking and eating the neurons,” Canoll said.

These immune cells, called microglia, were enlarged and had clustered in nodules, signaling inflammation, though not as severe as what pathologists see in cases of viral encephalitis. Curiously, there was no virus in the neurons being surrounded.

Still, microglia don’t act like this unless provoked.

“Something is triggering them to do that,” said immunologist Lena Al-Harthi, who studies at Rush University in Chicago how HIV affects the central nervous system. That trigger remains unknown, but Harthi suggested it could be an autoimmune response.
​

 

So.... essentially the exact opposite of what the RCGP have been pushing recently for LC and for ME for decades, dismissing every one of those simple things. Awkward... if they could even see the connection, which they clearly try hard to keep separate.

https://twitter.com/user/status/1402341040556740616

 

Nature: The four most urgent questions about long COVID

Quite a long article, in short:
- How many people get long COVID and who is most at risk?
- What is the underlying biology of long COVID?
- What is the relationship between long COVID and other post-infection syndromes?
- What can be done to help people with long COVID?

This is the part about ME/CFS:

Full article: https://www.nature.com/articles/d41586-021-01511-z

 

"Why long Covid will be a long haul

Many months after their initial infection, some Covid-19 patients are still suffering. More than a year since the pandemic began, what will the long-term effects of long Covid be?

When Melissa Heightman set up the UK's first post-Covid-19 clinic at University College London Hospitals (UCLH) in May 2020, she expected that the bulk of her time would be filled helping patients recover from the after-effects of spending many weeks on a ventilator. For the majority of these patients, she hoped the road to full recovery would be swift.

"At the beginning of the pandemic, we didn't know what the long-term sequelae of a Covid infection would be," says Heightman, a consultant respiratory specialist. "We thought it would be like flu, it would all just go away, and be fine."

Little did she know that a year on, a third of the clinic's patients would still be unwell, and largely unable to work. More than half were never admitted to hospital for Covid-19.

Almost as soon as the clinic opened, Heightman began fielding calls from puzzled local GPs, confused at a sudden influx of patients – often relatively young and with no underlying health conditions – who were experiencing chronic symptoms. Their stories all followed a recurring pattern, beginning with an apparently mild infection, before a strange constellation of ailments started to emerge. Rather than subsiding, these symptoms continued to persist for weeks and even months after the virus had supposedly left their bodies.

It was a conundrum that the medical world was not expecting. "These patients were initially left behind," says Heightman. "Most hospitals weren't able to see them easily, because they didn't have the budget to open a dedicated post-Covid clinic. But they're now our main focus.""

https://www.bbc.com/future/article/20210609-how-long-will-long-covid-last

 

It reminds me of the original 1959 paper by Acheson, where he said something to the effect that there would undoubtedly be cases arising in the community, but if they didn't have clear diagnosable neurological symptoms they should be regarded as hysteria.

 

How many times does something have to happen, every single time, after something else, before it becomes expected that it will happen after something else?

Just how stupid is 'medicine' and how stupid do they think 'we' are?

 

Annoying article that tries to be sympathetic but falls in the same old trap of not knowing how utterly disastrous the state of medicine is in dealing with chronic illness. Not so bad to be in the "psychologizing" thread but puts way too strong an emphasis on the obviously invalid framing of health anxiety.


As more kids go down the ‘deep, dark tunnel’ of long Covid, doctors still can’t predict who is at risk

https://www.statnews.com/2021/06/10...id-doctors-still-cant-predict-who-is-at-risk/

Doctors see similarities between long Covid and what can happen after mononucleosis or in other post-viral syndromes. Among teens, high-achieving athletes and successful students sometimes don’t get back right away to where they were before mono. They can’t get off the sofa, they can’t go to the mailbox — like their post-Covid peers. That similarity argues for developing an integrated medical approach to take care of all these patients better, including treatment for the anxiety and depression that have been exacerbated by the pandemic. “There’s a lot of overlapping Venn diagrams of what’s going on with those kids right now and all of the [therapeutic] pieces that are needed there,” John said. ​

It doesn't count when you just draw your own circle with a Sharpie, John. Stop mislabeling things then pretending you "found" it this way. Ugh.

 

Walter Koroshetz:

Today, the@NIH
is launching http://RecoverCOVID.org. This new resource seeks to understand, prevent, and treat the long-term effects of #SARSCoV2 infection, the virus that causes #COVID19. Share the news and let your friends and family know progress is possible. #RecoverCOVID

https://recovercovid.org

ME is mentioned under FAQs:
It's estimated that millions of Americans suffer from post-viral syndromes other than PASC. Will RECOVER help them?

RECOVER may help us learn how people recover from viral infection in general. It may also help improve our understanding of other post-viral syndromes, such as chronic fatigue syndrome, and autoimmune diseases - conditions in which the body's immune system attacks healthy cells.

 

BMA board of science in discussion about long COVID

Wednesday, June 16

https://www.bma.org.uk/events/bma-board-of-science-in-discussion-about-long-covid

Speakers include David Strain and Amy Small. Strain will lead the panel discussion.