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

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Long COVID-19: A Primer for Cardiovascular Health Professionals On Behalf of the CCS Rapid Response Team Ian Paterson MD , Krishnan Ramanathan MD , Rakesh Aurora MD, PhD , David Bewick MD , Chi-Ming Chow MDCM, MSc , Brian Clarke MD , Simone Cowan MD, MSc , Anique Ducharme MD, MSc , Kenneth Gin MD , Michelle Graham MD , Anil Gupta MD , Davinder S. Jassal MD , Mustapha Kazmi MD , Andrew Krahn MD , Yoan Lamarche MD, MSc , Ariane Marelli MD, MPH , Idan Roifman MD, MSc , Marc Ruel MD, MPH , Gurmeet Singh MD, MSc , Larry Sterns MD , Ricky Turgeon BSc (Pharm), PharmD , Sean Virani MD, MSc, MPH , Kenny K. Wong MD , Shelley Zieroth MD PII: S0828-282X(21)00287-7 DOI: https://doi.org/10.1016/j.cjca.2021.05.011 Reference: CJCA 4054 To appear in: Canadian Journal of Cardiology Received date: 4 March 2021 Accepted date: 23 May 2021
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The symptoms of post exertional malaise resemble myalgic encephalitis or chronic fatigue syndrome, and typically occur 24-72h post trigger, potentially lasting for several days. The opposite of “push and crash” is pacing. This further emphasizes the importance of early involvement of a multidisciplinary approach to prevent and support “push and crash” candidates to a path of pacing with reduced suffering, and improved sense of control and well-being.

Pacing involves:

Finding the individual’s envelope- paying attention to the level of triggers, which may be physical, emotional or cognitive

The individual adapting to their envelope- learning to control triggers

Expanding their envelope- gradual progression and adaptation
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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.
 
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SVT News has published an informative article about long covid, no BPS :):thumbsup:

(SVT is the Swedish national public television broadcaster.)

Tre myter om postcovid
https://www.svt.se/nyheter/lokalt/vastmanland/tre-myter-om-postcovid
Auto-translate said:
Three myths about postcovid

Postcovid is a new condition that affects around 10% of people who have had covid-19 infection. The disease has been ununresearch and untrue claims have been spread about postcovid. However, more and more reports have been able to identify the condition and disprove the claims.

In the clip above, SVT lists some of the myths surrounding the new disease postcovid.

Conclusions from the report:
  • All regions should set up one or more highly specialised clinics for patients with long-term complications of Covid-19.

  • These clinics should involve expertise from several specialties and professions.

  • Collaboration between research and health care needs to be strengthened in order to develop as soon as possible a scientifically sound evidence base on how to diagnose and treat different long-term complications of Covid-19.

  • The experience of those affected is an important part of knowledge acquisition and needs to be more clearly integrated into the research process.

  • Authorities, professional organisations, patient associations and research funders need to work together to ensure knowledge-based management of people with long-term complications in both primary and hospital care.
Source: Royal Swedish Academy of Sciences report "Post-acute Covid-19 syndrome - long-term complications of Covid-19".

Translated with www.DeepL.com/Translator (free version)
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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.
 
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.

 
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:

Some scientists weren’t surprised by long COVID. Illnesses that linger after an infection have been reported in the scientific literature for 100 years, says Anthony Komaroff, an internal-medicine physician at Harvard Medical School in Boston, Massachusetts.

He noted that fact in March, during a webinar organised by MEAction, an organization based in Santa Monica, California, that works to raise awareness of myalgic encephalitis, also known as chronic fatigue syndrome (ME/CFS). People with this debilitating illness become exhausted after even mild activity, alongside experiencing other symptoms such as headaches. Long dismissed by some medical professionals because it had no clear biological underpinning, ME/CFS is often post-viral.

It isn’t uncommon for an infection to trigger long-lasting symptoms. One study of 253 people diagnosed with certain viral or bacterial infections found that after 6 months, 12% reported persistent symptoms including “disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and mood disturbance”10. That percentage is strikingly similar to the long COVID prevalence observed in the United Kingdom by the ONS.

Some people with long COVID will probably meet the diagnostic criteria for ME/CFS, according to Komaroff and his colleague Lucinda Bateman, founder of the Bateman Horne Center in Salt Lake City, Utah, which specializes in treating ME/CFS11. But there do seem to be differences: for instance, people with long COVID are more likely to report shortness of breath than are those with ME/CFS, Komaroff says. Furthermore, if long COVID does end up being subdivided into multiple syndromes, that will further complicate comparisons between it and ME/CFS.

“I’ve so far resisted saying long COVID is ME/CFS, because I really think it is an umbrella term and there are multiple things happening in this long COVID umbrella,” says Nisreen Alwan, a public-health researcher at the University of Southampton, UK. And Deeks speaks for many: “I think everybody needs to be a bit agnostic now, and not make too many assumptions, and not put all these different syndromes into the same bucket.” What many do agree on, however, is that the two conditions could productively be studied in tandem. “There should be a coalition,” says Alwan. Some researchers are already planning to collaborate. For instance, a major study called DecodeME aims to recruit 20,000 people to find genetic factors that contribute to ME/CFS — and Evans says PHOSP-COVID will be sharing data with it.

“I’m really hopeful that the silver lining will be, at the end of the day, we gain better insight into other post-viral problems,” says Akrami.

Hastie puts it more bluntly: “Let’s not waste a good crisis.”
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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
 
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



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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.
 
rvallee said:
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.
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Also Sterne from the SMILE trial:

Research on long COVID in the Longitudinal Health and Wellbeing National Core Study

Jonathan Sterne is professor of medical statistics and epidemiology at the University of Bristol and director of the Health Data Research UK South-West Better Care Partnership.

He is co-lead of the Longitudinal Health and Wellbeing COVID-19 National Core Study. This aims to understand the health, social and economic impacts of the COVID-19 pandemic by uniting established population cohorts and national anonymised electronic health records to inform policy.

An international research leader in medical statistics and epidemiology, he led development of tools to assess the risk of bias in randomised trials and non-randomised studies that are used by systematic review authors worldwide.
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Looks like Sterne this:



I don't know Sally Singh's rehabilitation work.
 
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Applies to some of the unlucky ones here but it's also notable how the same issues are being discussed as if they were new, because none of those issues have been resolved and despite being common topics for us, we really aren't anywhere closer to having good answers. Describing these symptoms... so hard and yet absolutely necessary.

 
I don't know anything else about this

From: Dr. Marc-Alexander Fluks

Webinar: Long Covid-19 researchers (among Ozlem Tureci and Ugur Sahin - inventors Pfizer vaccine)

Station: Amsterdam Medical Centre / YouTube
Date: June 10, 2021
WebTV: English subtitles:

Dutch subtitles:


Item: Long Covid-19 researchers (among Ozlem Tureci and
Ugur Sahin - inventors Pfizer vaccine)
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