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

Shit shit shit. Do we have data on what percentage of SARS survivors developed this ME-like syndrome?

 

Of the people who've recovered from COVID-19 so far, have we heard anything about people suffering from post-viral symptoms after it? Apart from Clare Gerada

 

Dr Mark Guthridge tweeted this study:

Hickie et al, 2006 "Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study"

The infections they studied were EBV, Q-fever and the mosquito born infection Ross River Virus, all of which, I think, are known to have the potential for long-term sequelae. Of course, we don't yet know what health outcomes Sars-Cov-2 is going to have, but I would have to say I think a figure as high as 11% is unlikely.

 

There was this paper from 2009...
Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up.
https://www.ncbi.nlm.nih.gov/pubmed/20008700/

 

I thought we could do with a separate thread to discuss this.

I would be extremely grateful if any mods are able to copy over the relevant posts from the main coronavirus thread. Don't worry if you don't have spare energy to do that though.

The following article summarises the concern, and gives links to the research on post-SARS morbidity: https://www.thecanary.co/global/wor...onavirus-catastrophe-no-one-is-talking-about/

I really feel extremely worried about this possibility.

 

Here is my comment on that paper from another thread:

Lucibee said: ↑
There was this paper from 2009...
Mental morbidities and chronic fatigue in severe acute respiratory syndrome survivors: long-term follow-up.
https://www.ncbi.nlm.nih.gov/pubmed/20008700/

Unfortunately they use the Reeves definition, often considered of the weaker defintions.

This was interesting though

I suspect there is a greater number of people with chronic fatigue in SARS patients, but wether it's me/cfs or not, I would wait for a better definition to be used before making that judgment. Btw - I don't think it would bode well for us at all, I'm not sure anyone with post-SARS fatigue is getting a lot of help. I suspect if even a good number of people with covid got chronic fatigue or me/cfs they would be waiting decades for help and recognition.

 

Ron Davis and his team intend to to track post-COVID19 cases of ME/CFS. https://twitter.com/user/status/1239020569535733761

 

Why do you think that's unlikely?

 

@Jonathan Edwards (sorry to bother you again) bearing in mind the apparently high rate of some kind of fatigue syndrome in SARS survivors, do you think it's likely that a worryingly high proportion of COVID-19 survivors could develop ME/CFS?

 

On the plus side, there are lots of people who have recovered from COVID (2700 in Italy), and I'd like to think that we'd have heard by now if a significant number of people were developing CFS or similar after the infection. I hope???

 

This is the SARS study that was referred to in the Canary article that I shared above.

https://www.ncbi.nlm.nih.gov/pubmed/12594312

Note that this was only looking at patients who had been admitted to intensive care during infection with SARS. The majority of people infected with COVID-19 don't become critically ill, so hopefully the proportion of people developing long-term symptoms would be much lower!

 

The study that Lucibee linked isn't as far as I can tell clear on whether the patients studied had been critically ill, but it sounds like they were all treated in hospital.

 

The Hickie et al paper about CFS after certain viruses says:

"The syndrome was predicted largely by the severity of the acute illness"

 

I'm not sure which thread to put this in, but here is an article on Clare Gerada's description of how she 'beat' the coronavirus. Somehow, despite having no underlying health conditions, she is being referred to as a 'veteran' of the illness...

https://www.thesun.co.uk/news/11186999/coronavirus-paracetamol-chicken-soup-lemonade-survivor/

I think the article goes a long way to explaining the lack of empathy that's been shown to ME/CFS sufferers, especially in the online training provided to GPs (as discussed on previous threads).

 

My personal prediction is that she will use this example of her 'fear' to bolster the BPS model of 'CFS/ME', not to increase her understanding of what having ME is really like.

Edit: I'm not sure if this breaks forum rules in relation to implying the future behaviour of an individual, but I do think it is relevant to us as a patient population to consider future possibilities (especially as some PWME have made tweets about her previous statements).

 

In this article, she says when she got flu 15 years ago she was only ill for half a day! So she clearly had no personal experience of just how ill people with ME are (every day, for years on end).

https://www.dailymail.co.uk/health/...-Gerada-describes-experience-coronavirus.html

 

It is very revealing of our system, of the people in it, and the values they hold, that someone like Clare Gerada, with no empathy, or apparent medical knowledge (as it relates to people, not just as it relates to humans) can be chairperson of the Council of the Royal College of General Practitioners.

She's not describing a serious or life threatening disease, from her own description she had the sniffles for a few days, had some chicken soup, pulled herself together, and got better.

...and then crowed about it, to the national, and maybe international, rags - boasting what a superior person she must be.

She's 60, not 16 - the whole 'look at me, look at me, look what I've done, I got better, without any of those nasty medicines' (odd point of view for a doctor) is just childish - and very concerning that someone like this holds power over me.

 

The fact she is telling older and vulnerable people not to worry about the coronavirus, based on her own limited experience (as someone who is financially secure, in good housing and general health) speaks volumes.

 

I grew up sharing a bedroom with 2 sisters, not unusual for working class families even today - so how can most individuals in families self isolate? She is so far from understanding most peoples' reality, it's very scary.