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

https://twitter.com/user/status/1492655785062834181

 

Very weird people: talking about illness causes people to be afraid of illness and makes them more likely to be ill and this Long Covid illness is talked about all the time and that's why there's so much of it, it spreads culturally.

Meanwhile in reality, where the messaging is universally trivializing of Long Covid and LC is almost never part of any messaging about the pandemic in general:

https://twitter.com/user/status/1492883799641837573


Although very little blame falls on the news media here, if anything if they relied exclusively on medical professionals this would never be talked about at all, patients do 99% of the messaging and advocacy work.

 

But...most people have heard of telekinesis, and by that logic that means that they must therefore suffer from it, so not being able to lift their hands should be no barrier to either eating dinner, sports, or working.

 

If someone's in a listening mood, there's no transcript. 30 minutes with the NIH Recover initiative lead:

https://twitter.com/user/status/1492784876742918148


Direct link: https://www.nejm.org/action/showMediaPlayer?doi=10.1056/NEJMdo006435&aid=10.1056/NEJMe2201619&area=.

 

Reddit thread from the /r/CovidLongHaulers forum: Comment the number 1 thing that’s helped you the most with your longcovid.

Skimmed and lots of different answers, top ones are: rest & pacing, antihistamines and patient forums. But it is about things that "helped", low standard. Nothing that stands out and makes a difference. A few odd mentions of vaccines and one about exercise but they don't have PEM. It's mostly time for people who can rest.

Meanwhile there are many clinics who attribute their own efforts to their patients' recoveries even though time is clearly the biggest factor for most. That's just terrible science.

 

Rehabilitation medicine physician so unsure if worth it but whatever, tags suggest a sincere outreach:

https://twitter.com/user/status/1492919702833745929

 

The Swedish Covid Association has published a short info sheet (in Swedish) about vision-related symptoms after covid-19 infection, authored by optician Jan Johansson at Karolinska. They suggest you bring it with you to your optician appointment.

Synproblem efter covid?
https://covidforeningen.se/synproblem-efter-covid/

 

After reading the whole thread I really don't have much of a problem with this provided that the clinicians have been developing a sound understanding of PEM.

There will always be some people who are very mild or who are on the way to recovery anyway. If they are working within there limits as we all try to do then its all good.

But they will inevitably see people for whom it is not possible to add ANY exercise to there daily routine -- so long as that is recongnised and safe-guarded and they have access to monitoring and testing or symptomatic relief of whatever then it's still OK by my estimate.

 

Pay-walled article in an Irish national newspaper:

Tackling brain fog and other nasty legacies Covid-19 has left in its wake Luke O'Neill

Insights gained into how to treat long Covid will be useful in dealing with other viral infections

https://www.independent.ie/opinion/...s-covid-19-has-left-in-its-wake-41341618.html

---
But it also got me thinking about how, following a viral infection, there can be residual symptoms. This is sometimes called post-viral fatigue syndrome — or in the case of Covid-19, long Covid, which is also called Post-Acute Sequelae of Covid (PASC). One study has shown that around 10pc of people between the ages of 18 and 49 who have had Covid-19 get long Covid. This rises to 20pc for those 70 or older. Anyone can get it, even if you’re very healthy before you catch Covid-19. It can even happen after mild Covid-19 symptoms so there is no rhyme or reason to it. And it seems to affect everyone differently. Symptoms include fatigue, loss of smell and taste, shortness of breath on exertion, trouble with sleeping and low-level anxiety. And it can go on for months.

---

"In the meantime, doctors recommend that people with long Covid should pace themselves and not overdo things. Light exercise or yoga have been shown to be beneficial. Don’t hesitate to reach out for support from friends, family and your GP."

---

"The insights gained and therapeutic approaches that emerge will be useful in the treatment of long Covid, but also for the symptoms reported following other infections including chronic fatigue syndrome."

 

Kyodo News FEATURE: Reduced brain function, immune disorder a possibility of "long COVID"

Quote:
The center has long studied chronic fatigue syndrome, which causes various symptoms such as extreme fatigue and body aches. The presence of autoantibodies that disrupt the function of autonomic nerves is presumed to be one of the factors involved in chronic fatigue syndrome.

Sato said the center is applying the same knowledge to patients with long COVID, who exhibit many symptoms in common with CFS sufferers.

"Although they are few, some people with influenza do not fully recover. However, with COVID, there are many who don't, and this is why it is a particularly scary illness," Sato said.

 

Article in Cell Reports Medicine from Bergen, Norway about Long Covid. The article discusses among other relationship between Long Covid and other post-infectious syndromes and mentions CFS. One of the authors, Nina Langeland, has researched an outbreak in Bergen in 2004 of the parasite Giardia, which led to chronic illness and some being diagnosed with ME.

Quote:
Subsequently, chronic fatigue syndromes or post-infectious fatigue syndromes have been associated with several infectious diseases, notably brucellosis, Q-fever, giardiasis, mononucleosis and flavivirus infections such as dengue fever. In all these syndromes, excessive fatigue is a key symptom, and several other accompanying symptoms seem to align with key symptoms reported with long-COVID. Research has found similar clinical presentations in post-infectious syndromes caused by different microbes and proposed that the host response may be a more important determinant than the etiological agent. As the pathogenesis of post-infectious fatigue syndromes remains to be elucidated, long-COVID pathogenesis is equally unclear. Interestingly, certain symptoms appear characteristic of long-COVID, such as disturbed taste/smell and dyspnea, indicating that long-COVID might be conceptually different from other postinfectious syndromes.


Blomberg, B., Cox, R.J., Langeland, N., Long-COVID: A growing problem in need of intervention, Cell Reports Medicine (2022), doi: https://doi.org/10.1016/j.xcrm.2022.100552.

 

Dunno - surely those that reported loss of taste/smell would have been diagnosed with depression?

They seem to like doing that for several years per patient.

My sense of taste and smell vary a lot, sometimes nothing tastes of anything, sometimes tastes are odd/fowl.

It's 'complicated' by the fact that I used to smoke until about 8 years ago.

But nothing tastes or smells 'right', food that I used to enjoy is just blah.

My point is that who says this is a symptom unique to covid when it's much more likely it's both been ignored or used as 'proof' of a depressive illness until now.

 

I had fairly severe Covid in November. My senses of smell and taste have come back slightly and I've probably got back about 20% of what they were. Food has little taste and I still dislike what used to be my favourite brand of tea. Nothing would persuade me to discuss this with a doctor.

What would be the point?

 

Problems with taste and smell may be signs of certain health problems, such as:

Obesity
Diabetes
COVID-19
High blood pressure
Poor nutrition

Nervous system diseases such as:

Parkinson disease
Alzheimer disease
Multiple sclerosis

https://www.cedars-sinai.org/health-library/diseases-and-conditions/s/smell-and-taste-disorders.html

 

That's all rather alarming!

 

Study points to vagus nerve dysfunction as a central pathophysiological feature of long COVID

https://www.news-medical.net/news/2...pathophysiological-feature-of-long-COVID.aspx