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

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rvallee said:
It appears so. Of course it was framed almost entirely as mental illness at the time so nothing came of it. There was a Reuters article that framed it entirely as psychological consequences, somatoform pain, etc. So basically nobody actually took this seriously because of the misleading framing, which is this way because nobody takes us seriously because of the misleading framing. Layers upon layers of failure lead to this.

https://bmcneurol.biomedcentral.com/articles/10.1186/1471-2377-11-37

Chronic widespread musculoskeletal pain, fatigue, depression and disordered sleep in chronic post-SARS syndrome; a case-controlled study




Maybe this time it's too big and personal to dismiss as mass hysteria. Maybe not. I expect no serious research to be done on this unless forced to by people screaming at authorities to do their damn job. But maybe if it hits the right people it will lead to a few epiphanies.
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Shit shit shit. Do we have data on what percentage of SARS survivors developed this ME-like syndrome?
 
alex3619 said:
Its most probably just the more common post viral fatigue. If Covid-19 induces ME in any substantial number of survivors, and its a possibility it will, this is a nightmare scenario for the world. Even though I would welcome the sudden attention and recognition of ME, its far too high a price.
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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"

Results: Prolonged illness characterised by disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and mood disturbance was evident in 29 (12%) of 253 participants at six months, of whom 28 (11%) met the diagnostic criteria for chronic fatigue syndrome. This post-infective fatigue syndrome phenotype was stereotyped and occurred at a similar incidence after each infection. The syndrome was predicted largely by the severity of the acute illness rather than by demographic, psychological, or microbiological factors.
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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.
 
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/
They were also assessed for the presence of chronic fatigue by using (1) the modified criteria for chronic fatigue syndrome (CFS) according to the Centers for Disease Control and Prevention (CDC) (1994 version),15 in which the exclusion criteria for psychiatric disorders were omitted, and (2) a self- reported Chinese version of the Chalder Fatigue Questionnaire16 (the questionnaire was translated from English to Chinese then back from Chinese to English).
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Unfortunately they use the Reeves definition, often considered of the weaker defintions.

This was interesting though

Given the commonness of chronic fatigue symptoms among SARS survivors and its occurrence independently of the psychiatric morbidities, the etiology and pathophysiologic mechanisms should be investigated. In this regard, there has been postulation about the possible involvement of cortisol status and chronic fatigue.19 Among SARS survivors, most were treated with high doses of corticosteroids during the acute infection phase of the disease, and some of them continued to be treated with steroid replacement therapy during the recovery phase. Hypocortisolism was reported in almost 40% of SARS survivors 1 year after the infection.
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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.
 
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!
 
Sarah94 said:
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???
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I don't think we'd know yet. Anyone feeling wrung out and exhausted after having had Covid-19 is going to assume that its just the short-term after effects of the virus, especially if they had a severe 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).
 
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.
 
Wonko said:
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.
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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.
 
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