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

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NICHD News
@NICHD_NIH
Learn about the CLOCK consortium, which seeks to understand long-term outcomes of COVID-19 in children & adolescents. The research is part of NIH’s RECOVER Initiative. Learn more: https://bit.ly/3EyQUT0. #NICHDimpact"

hope it's a coincidence that they've picked the same name as the Clock study(?)
https://www.s4me.info/threads/non-h...lock-study-2021-stephenson-and-crawley.19061/

 

In the file of "misguided good intentions".


Promotion of non-evidence-based therapeutics within patient-led Long COVID support groups
https://www.nature.com/articles/s41591-021-01589-y

Long COVID support groups play an essential role in advocacy, patient support and research development. However, patient-led support groups are vulnerable to people joining the group who then use their access to promote experimental, unproven or ineffective therapeutics and treatments. The combination of potential adverse effects and the often false hope offered by these non-evidence-based therapeutics can be damaging to patient health and wellbeing. The promotion of these therapeutics also suggests that there are existing treatment options for Long COVID patients, diminishing the ability of groups to advocate for new Long COVID research that may lead to actual evidence-based therapeutics.​

The idea that sick people who have been facing life-ruining illness for an extended period of time should just shut up and wait is absurd. It's been almost two years. This is a sound argument when the context isn't considered, with the context it's beyond naïve. Mostly because there simply is no help in the meanwhile and time is the biggest factor, while medicine is completely paralyzed and hasn't budged one bit so far. Denial remains the norm.

But more importantly, I almost never see any discussions over those drugs in most patient communities. They were discussed for a while, now they barely get the odd mention. Meanwhile there is a constant stream of outrage at physicians denying the illness and giving harmful advice that harmed many. So most of the harmful pseudoscience is coming from health care, not the patient communities. If anything, most of the discussions I see are far more substantial than what physicians are discussing among themselves, but that's just because they don't take it seriously so of course they aren't discussing anything of substance.

This is a textbook case of "clean your own house before you start giving house-cleaning advice". Medicine currently has a huge problem with misinformation being spoken recklessly, is pushing a lot of pseudoscience all on its own and so it is poorly place to speak out against it, when it is the main purveyor in this context. Especially with a starting point of "something like Long Covid cannot possibly exist and this discussion is final". Gonna have to eat a lot of crow to regain credibility here.

 

Rather good video on Long Covid. However it remains in the format of personal vignettes, there's basically zero journalism effort giving it context, it shows the impact on 3 people and some comments from physicians (who seem to be slowly getting it) but it simply gives no information about how large or significant it is.

It's otherwise a fair account but it simply did not bother looking at the broader context. It mentions one of the patients was diagnosed with CFS and POTS and that's it, not even curious about why a "new condition" could somehow have old diagnoses, unable or unwilling to make the connection. The diagnoses aren't even mentioned in the article, only in the video.

What reporting is coming out of journalism is simply inadequate. If there's anything we can do better moving forward it would be this, producing informative media content. As long as the public doesn't know how significant there is, and medicine won't do that, it simply won't take it seriously. Journalism isn't up for it because they will turn to medical advisers who are more likely than not to mislead them.

There's a ~19 min. video with interviews with some patients and physicians. It's frankly honest, begins with the most important feature that's being largely suppressed by health care systems: that it can happen to anyone at any time and there will simply be no help whatsoever available if it happens to you. That was the fear with AIDS and the threats over the blood supply. This is the message that can get through to people because it's the simple unvarnished truth.


Why are they still sick? The latest clues in the mystery of COVID-19 long haulers
https://globalnews.ca/news/8424118/covid-19-long-haulers-mystery-clues/

Almost two years into the pandemic, there are a growing number of people who were sick and are not getting better. They are known as COVID-19 long haulers, people living with unexplained symptoms including pain, exhaustion and debilitating brain fog. As Robin Gill found out for The New Reality, experts are trying to unravel the mystery of why people are still sick and who appears to be at more risk.​

 

Unravelling the 'mystery' that's been around for decades.

 

https://patient.info/news-and-features/why-is-mecfs-research-key-to-understanding-long-covid

"Why is ME/CFS research key to understanding long COVID?"

"A large number of people with long COVID are reporting similar symptoms to those who have myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Scientists are now researching the similarities between the two conditions. Many hope that exploring this interconnection will result in a better understanding of both long COVID and ME/CFS."

 

https://www.longcovidkids.org/so/28Nsi9OfY?languageTag=en&s=09#/main

 

https://www.longcovidkids.org/so/28Nsi9OfY?languageTag=en#/main

 

Sound familiar ?
https://twitter.com/user/status/1470044380417433611

 

A newly set up long covid children’s clinic at my neighbouring large teaching hospital trust.

https://www.cuh.nhs.uk/news/childrens-service-to-monitor-omicron-impact/

I was pleased to see something at least in place until I read the following:

“GPs, community nurses, and local paediatricians will be able to access new online resources outlining the investigations needed to make a definitive long Covid diagnosis, and the regional and hospital resources that are in place to help young people and their families”.

“Team members include occupational therapists, physical therapists and psychologists, who rub shoulders with many other paediatricians and experts in child care. They will focus on pain, chronic fatigue, mood, anxiety, motivation, and ways to re-access education and social groups”.

I shouldn’t be surprised but these poor children.... I wonder what experts they will be “rubbing shoulders” with.

 

Same energy. Also waiting for this stuff to be produced by others is how we get hot garbage like Afflicted. The only benefit of an empty space is that if you're first, you can occupy it in full. The rest of the world is sleepwalking through this, might as well take advantage.

https://twitter.com/user/status/1470215475174903808

 

The name of the show does not inspire confidence in how they will handle this, but that could be misleading. Then again the producers of Afflicted said the same thing.

https://twitter.com/user/status/1470115598516596741

https://twitter.com/user/status/1470183466172141573

 

Your Fantastic Mind might just might turn into All In Your Mind if it's anything like what happened with Afflicted.

 

Danish news report today of a study on long term symptoms in children post covid-19 infection.

Aalborg University Hospital presents the study on their website and writes that sequelae after covid-19 infection in adults have been thoroughly examined and described (sic), but that until now the knowledge about long term symptoms in children has been low.

In order to be able to isolate symptoms caused by coronavirus from symptoms caused by social restrictions, the study has also examined children's well-being during the pandemic.

The result of the study is that 0.8% of children who have been infected with the virus, have experienced long term symptoms compared with children who have not tested positive for corona virus. Older pupils had more long term symptoms than younger pupils.

The most common symptoms for all age groups were fatigue, reduced ability to smell/taste, reduced muscle power. Other symptoms were chest pain, dizziness and problems with breathing.

The symptoms cleared in most children after 1-5 months.

33 000 children participated. Half of them had not tested positive, and this group had more concentration difficulties, headache, muscle ache, dizziness, cough, diarrhoea, nausea and fever than the group that had tested positive. The researchers therefore suggest that these symptoms are not symptoms of corona virus sequelae. When asked by the Danish public broadcaster if there might have been children in the control group who actually have had corona, one of the researchers doesn't rule it out.

The study has been accepted by European Journal of Pediatrics, but hasn't been published yet, so it's difficult to check the hospital's interpretation and presentation of the results.

Aalborg Universitetshospital Kun få børn oplever senfølger efter coronavirus
google translation: Only a few children experience late sequelae of coronavirus

 

The Norwegian public broadcaster has today an article about a treatment offer in Bergen municipality for Long Covid. It is run by a physiotherapist and an occupational therapist who saw the need for rehabilitation for these patients, but that a suitable offer for the patient group was lacking, so they made their own. The director of the Norwegian Directorate of Health says that we know more today about the virus now than two years ago. "But we understand that people can get anxious when they experience persistent ailments, even if they are declared recovered. Fortunately, most will get back to a normal life eventually".

No word about PEM, pacing or chronic illness post viral infection.

The article links to the rehabilitation offer which is a group session twice a week for eight weeks.

What they offer is:
- meet others in same situation
- share experiences
- challenge oneself in safe surroundings
- work towards previous physical, psychological and cognitive function
- get a better understanding of one's situation

NRK: Simon (27) ble ikke frisk etter korona - nå har han fått hjelp
google translation: Simon (27) did not recover from corona - now he has received help

 

Moved post

What We’ve Learned About Identifying And Treating Long-Haul COVID

This is from a show on National Public Radio in the US.

The physician at Johns Hopkins brings ME/CFS into the conversation.

Dr. Igor Koralnik throws out some percentages he is seeing at Northwestern Medicine. I was left with the impression that Dr. Igor thinks long Covid is an auto immune disorder.

https://the1a.org/segments/what-weve-learned-about-identifying-and-treating-long-haul-covid/

 

Not sure how widely read. Skimming through seems pretty good. I think it's paywalled but thread includes screenshots. Ah, I see, the author is a pharmacist, that's why it's this publication.

https://twitter.com/user/status/1471117845740367881

 

Good thread with many reports from around the world. One thing I notice in every country's health care systems messaging about Long Covid is that it's almost all fully independent, no one looks elsewhere, only inward. No one compares to other countries, or even acknowledges it, hence we have absurd things like in Sweden talking about weird cultural factors, always framed from their own cultural lenses, not bothered that none of those likely apply elsewhere. This has been seriously bizarre from the start but that it just keeps going is simply absurd.

https://twitter.com/user/status/1471143329811341313

 

Long covid symptoms among hospital inpatients show little improvement after a year, data suggest
BMJ 2021;

"patients in the “very severe” group had higher levels of substances associated with whole body inflammation, tissue damage, and tissue repair, while those reporting poor cognition appeared to have higher levels of substances linked to “brain fog,” suggesting possible neuro-inflammation."

rest at: https://www.bmj.com/content/375/bmj.n3092.short?rss=1

Pre-print of the original (pre)publication https://www.medrxiv.org/content/10.1101/2021.12.13.21267471v1.full.pdf+html

Anybody know what substances are linked to brain fog?

ETA: Chalder is one of the many authors on the preprint