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

I heard about people in China who are "recovered", test negative, then positive and have "unrelated" symptoms. Type of symptoms unspecified.

wait, what? they said this to the public? wow.

Terrible, horrible way to get it but I hope it brings more attention and funding.

 

@Forbin that's a cool chart. I'll have to look up my onset year. I had "flu" but I wasn't given a flu test and I recently learned that even during a flu outbreak, some of the people can have other illnesses, like cytomegalovirus.

@ everyone, thanks for all the links. I wanted to compile them for something, and this is a lot of good information.

Here's one more (I recall it being a bigger study):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292445/

And this one doesn't say the number of patients in the abstract or have full text available atm
https://www.ncbi.nlm.nih.gov/pubmed/19828908

 

I am unclear if this is relevant. It is if the severity of the current strain is important, it is not clear if the severity of the patient responses are more important. My understanding, with a failing memory, is that those who go on to get some kind of CFS from a virus (not necessarily ME, the Dubbo studies were mostly looking at prolonged PVFS from what I recall) had more severe virus related symptoms. This might be from the virus, but is more likely to be from the individual patient immune reaction.

Looked at it one way, MERS is much more dangerous than the current Corona virus. However the infectivity, the ease of transmission, of Covid-19 mean huge numbers are infected. Even if the individual severity is lower on average, the much larger numbers may pose a greater risk of ME, CFS or PVFS, due to higher numbers with more severe symptoms. So the numbers with an ME-like post viral syndrome may be huge. Or not. This is the first time we have seen this situation, and what the epidemiology tells us will be very enlightening, even if scary, sad or tragic.

You can also be infected with Covid-19 for some weeks. What impact does duration of the illness have on development of ME?

On a side note, I personally think that the fear of such a virus, in the minds of psychs, will lead to a higher incidence of delusion surrounding post viral symptoms.

 

Just from being involved with the ME community since the 1980s, I get no sense that ME is associated with the severity of the initial viral infection. Post Viral Fatigue Syndromes are related to severity and some may lead to ME but for many people ME is much more insidious, gradually getting worse over years. Ramsay felt that the initial virus infection could be subclinical in many patients.

If there is a common thread it is doing too much while the virus is active. Polio was related to how active the victims were. I have read that tennis players had problems with their arms, football players with their legs.

A proper convalescence for people who get covid19 may prevent a lot of future heart ache.

 

OH gets Private Eye. This article is in the 20 March to 2 April edition.

 

I didn't mean to suggest that the virulence of an infective strain was the only thing that could produce severe symptoms in the initiating phase. Concurrent factors, like being in a state of exhaustion prior to getting an infection, or trying to continue to exert yourself during an infection, might also contribute the severity of initial infectious episode, as might other coinciding illnesses/infections, or, as you say, an unusually strong immune response.

I also do not mean to suggest that severe infection is the only route to developing ME/CFS.

As far as infectious onset goes...

The 2005 Dubbo study showed that the severity of the symptoms during the initial infection predicted the development of a long term fatigue syndrome consistent with chronic fatigue syndrome (debilitating fatigue and other symptoms lasting more than six months). The type of initiating infectious agent (Epstein-Barr Virus, Ross River Virus, or Q Fever) was not predictive.

I can't reproduce table 3 here, but the main risk factors at three months out were Irritability, Musculoskeletal Pain, Neurocognitive disturbance and Fatigue.

 

https://twitter.com/user/status/1245678613065871360

 

https://twitter.com/user/status/1246120594409586690


Her thread of 13 tweets can be read here at threadreaderapp
https://threadreaderapp.com/thread/1246120594409586690.html

 

https://www.theguardian.com/world/2...al-load-scientists-say?CMP=Share_iOSApp_Other

When I read this I just thought about the Royal Free Hospital ME epidemic, and wondered if the high number of medical staff falling sick and many of them developing ME-type illness was related to the high viral load they may have been exposed to in sick patients.

I've always (up till now when I'm re-evaluating it) assumed that the initial viral dose is of little significance, as it's only after multiple generations of exponential growth in the body that the virus starts producing symptoms, and I think the viral load needed to do that is multiples greater than any inoculating dose would be, even if someone sneezed in your face. But now I'm wondering if the initial viral dose is significant in some way, and if it is how can this be demonstrated and what are the implications. For example it would suggest that even if of limited effectiveness we should all be wearing face masks.

 

I choose more or less any mask other than a tiger mask, as tigers can seemingly now catch covid-19.

 

Not sure if this has been posted already(I remember reading something similar, but can't find it)

https://www.theglobeandmail.com/can...-could-lead-to-neurological-complications-in/

 

I wonder if this will spur someone to do a long-term follow-up on SARS patients and how's the situation after many more years have passed since the initial studies. Sounds kind of useful to do at this point. You know, the past informing present and future. Very topical and all. Because those findings about the first SARS flew completely under the radar and ended up running a mushroom farm in the mix of darkness and BS of psychosomatic filing cabinets.

 

The interesting thing about the ME epidemics is that the people who got sick were all active. In the Royal Free the staff became ill while the patients did not. Also there was an epidemic in a convent where the nuns were contemplative (lots of praying, not a lot of activity) and did not get sick but the teaching students who lived there did.

Since the very beginning the abnormal response to exercise has been integral to our disease.

 

Merged post

Multiple mentions of ME as a possible consequence from COVID-19.
https://www.bbc.co.uk/sounds/play/m000h1rq

First brief mention at 1hr 11mins 45secs.

Largest section at 1hr 20mins. Some good, some less good. In brief: "post-exertional tiredness, in passing covers criticism of PACE (without naming it), diet important, avoiding deconditioning important.

Final mention I found at 1hr 22mins 55secs. A survivor of COVID-19 said that she had recovered from ME many years before and post-COVID-19 symptoms weren't as bad, while still being very troubling.

I didn't listen beyond this, so there might be more.

 

on a phone-in on BBC radio2 today someone, who had CV a month ago, asked Dr Jarvis how long before the fatigue went as she was still struggling with it. She then added that she was pushing herself to exercise because she thought it would do her good and it helped with her mental wellbeing. Dr J. said she didn't know as they don't have enough info on CV yet, but thought the exercise was a good thing.

Really?

 

https://www.washingtonpost.com/opinions/2020/04/09/my-near-death-experience-ventilator/

Has severe fatigue now. He also gives updates on Twitter. Article might be paywalled.

I spent six days on a ventilator with covid-19. It saved me, but my life is not the same.

 

https://www.sciencemag.org/news/2020/04/survivors-severe-covid-19-beating-virus-just-beginning

For survivors of severe COVID-19, beating the virus is just the beginning

 

I haven't listened to this myself, but on Twitter someone appears to have recommended LP (tweet now unavailable) which dr. Jarvis promptly rejected, so that's something.
https://twitter.com/user/status/1248259712526753799

https://twitter.com/user/status/1248279100432809985

 

I haven't been following this thread but thought it was interesting to see this from a prominent person (Rupert Read is a leading figure in Extinction Rebellion in the UK):

https://twitter.com/user/status/1248544877354389504