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

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ME & Post-COVID-19


One person's perspective. It is something to keep in mind with advocacy.

At the same time, I think one also needs to look at positives so that one gets a true and balanced perspective on what is the best way forward. Getting extra sums of money for research (which could be substantial) could be very useful.
 
Covid-19 and Post-viral Fatigue Syndrome by Dr Charles Shepherd | 30 April 2020
We are starting to receive reports about previously healthy people who have had (or probably had) coronavirus infection and have not been able to return to their normal level of health and energy levels in the weeks following the onset of symptoms.

These reports are largely from people who have managed at home and not had a more serious infection that required hospital admission.

Some reports are from health professionals. It seems likely that some of them are experiencing what is called post viral fatigue (PVF), or a post viral fatigue syndrome (PVFS).


This latest MEA leaflet can also be download for free!
We are also receiving reports from people with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) who have had this infection and now have a significant exacerbation of their ME/CFS symptoms – especially a further reduction in energy levels.
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https://www.meassociation.org.uk/20...yndrome-by-dr-charles-shepherd-30-april-2020/
 
article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020
Increasingly though, we are hearing reports of people initially feeling understandably elated at having survived a potentially lethal infection but then, from week 3 or 4 onward, developing overwhelming fatigue and muscle pains. This seems to occur in only a minority of patients but is a striking feature of the condition. As someone long interested in post-viral and chronic fatigue syndromes, it has been fascinating to see both the acute phase and the post-viral problems in the same patient – an experience I have very rarely had before as I usually only see people months or years after the initial viral infection has been managed by others.
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What do we know about the biology of post-COVID-19 fatigue?
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Sadly, we know almost nothing because it is a brand new infection. But we do know about a related coronavirus, SARS, of which there was an outbreak in 2002. Dr Harvey Moldofsky at the University of Toronto conducted studies into the ongoing health problems of some people who were diagnosed with SARS. He recruited 22 people who had not been able to return to work for an average of 19 months after the illness and found that the symptoms of chronic post-SARS form a syndrome which includes chronic fatigue, pain, weakness, depression and sleep disturbance. Dr Marco Lam and colleagues at The University of Hong Kong found that 40% of SARS survivors experienced symptoms of chronic fatigue following the illness and 27% were classified as having chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME).

Whether we will see similar statistics with COVID-19, only time will tell. But this may indicate the kind of ball-park figures we could reasonably anticipate with about one-third of people experiencing clinically significant post-viral fatigue.
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https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19

eta see later post on this thread https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-133#post-302423
 
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Sly Saint said:
article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020


https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19
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https://www.fatigueclinic.co.uk/gerald-coakley

In his private practice, he sees patients with a range of general rheumatologic problems at Winchester House, Blackheath Hospital, and at The Harley Street Clinic. At Keats House, London Bridge, he runs an inter-disciplinary service for patients with Chronic Fatigue Syndrome. He sees clients for medicolegal reports either at The Harley Street Clinic or at Keats House.

Since 2001, he has been involved in the private sector care of people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME), and runs a weekly private Fatigue Clinic at Keats House, St Thomas Street, London SE1.
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(There is duplication on the page) I wonder what he is like.
 
Sly Saint said:
article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020


https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19
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Dr Coakley has had helpful advice and support in managing post-viral fatigue patients and in thinking about post-COVID fatigue from the expert multi-disciplinary team at Vitality360.
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https://web.archive.org/web/20160616151514/http://vitality360.co.uk/about-us/
About Us

We provide effective evidence-based rehabilitation delivered by leading fatigue and pain specialists. We are all experienced in supporting people with CFS/ME, fatigue, fibromyalgia and chronic pain. We can provide physiotherapy, occupational therapy, Cognitive Behavioural Therapy (CBT), Graded Exercise Therapy (GET), specialist dietetics and psychotherapy.

“Our lives are so different – the world has opened up – and has changed in a way that [my husband] and I had stopped believing was possible. I can’t believe all of the things I have achieved with your help!” (Annabel, London)

To find out how we can help and to discuss your options, please call 020 7263 5026 or email info@vitality360.co.uk
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Sly Saint said:
article in topdoctors by
Dr Gerald Coakley
Published: 29/04/2020


https://www.topdoctors.co.uk/medical-articles/post-viral-fatigue-and-covid-19
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I've seen worse advice, at least he seems relatively aware of the research. But the last bit about going to see a GP and fatigue clinics is a bad sign. If he doesn't understand the NHS guidelines and the fatigue clinics are useless, I'm not sure what else he misunderstands. Given the post above showing they do CBT and GET at this clinic, I would imagine it's about 8.5 of the whole 9 yards.

Better than average so there's that. 1/3 would be freaking enormous, though. It would essentially change our whole civilization if a high % of people get infected and that many develop significant post-viral chronic illness. I'm not sure people quite understand the implications of that, especially as the most at risk are by far essential workers and, especially, medical personnel.
 
Recovering from COVID-19 / Can Coronavirus cause Post Viral Fatigue?
video on youtube by someone who has had Covid-19; talks a lot about CFS citing various research papers; mostly the ones re cytokines, inflamation etc. But top of his Scholarly list is
Wessely et al, 1989: https://www.ncbi.nlm.nih.gov/pmc/arti...

He also briefly talks about current treatment or lack of. He had PVF after gladular fever some time ago and recovered after a year.

Code: 
https://www.youtube.com/watch?v=1MHlum4AOlY
 
Article in the Guardian:

https://www.theguardian.com/world/2...to-coronavirus-recovery-long-lasting-symptoms

Carmine Pariante, professor of biological psychiatry at King’s College London, agreed there could be a rise in people experiencing CSF-like syndrome. “We don’t know if this is going to happen with Covid-19 because we don’t have the follow-up data,” he said. “But the picture unfortunately, both in terms of the biochemical picture [of the immune response] and the acute fatigue, which is very prevalent, make us think it will be possible.”
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Gill said it was important that those who had had a coronavirus infection or suspected Covid-19, had access to physiotherapists and nutritional advice.

Also helpful would be leaflets with advice on recovery, such as reminding patients to drink plenty of fluids and to do breathing exercises, said Gill, adding that some advice could be drawn from existing knowledge of other conditions.
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Esther12 said:
Article in the Guardian:

https://www.theguardian.com/world/2...to-coronavirus-recovery-long-lasting-symptoms
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Guardian continuing strong with their lazy poorly-researched ME coverage. As is tradition. Looks like they offloaded that part to the SMC, who left it to the new KCL CFS-MUS unit.

No idea why someone taught it reasonable to quote Pariante as an expert on the topic and this is the first I've heard of Gill and his timeless advice to, checks notes, drink water and breathe. Thanks, doc, I'm totally cured. Nobody would have ever thought of doing that.
 
First post I have seen so far on the COVID19Positive subreddit containing PVFS advice and, fortunately, comes from a good source:



I wonder how it will go when people start to notice the behavioral nonsense and how freakishly weird and inappropriate it is. Especially as we're already seeing the inevitable "LP for COVID PVFS" grift.
 
The Telegraph: Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn

“Research about how the virus impacts the brain is in its infancy,” Professor Sir Simon Wessely, former President of the Royal College of Psychiatrist, told The Telegraph.

“We don’t know whether Sars-Cov-2 does or does not [cause CFS/ME]. But we need to set up cohort studies of those infected by this agent as soon as possible, and follow people up for the short, medium and long term.”
 
As health care personnel are particularly vulnerable for the corona virus and Covid-19, I do hope they and their colleagues will be able to distinguish between PVFS and burnout should they still struggle after the infection is over. This text by Gerada made me a bit worried.

BMJ: Understanding burnout by Clare Gerada

Looking back, I had classic burnout. Burnout is formally defined as a state of physical, emotional, and mental exhaustion caused by long term involvement in demanding situations. For me it conjures up an image of “destroyed” individuals, shells of their former selves, damaged by the “fire” of their work that rages around them.
...

The covid-19 crisis is putting additional pressure on doctors and the health system in general. An Ipsos MORI poll has reported that half of workers already believe that their mental health has declined in the first two months of the crisis, and if covid-19 has even the same psychological impact as other major pandemics a vast number of key workers will need support.
 
Kalliope said:
The Telegraph: Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn

“Research about how the virus impacts the brain is in its infancy,” Professor Sir Simon Wessely, former President of the Royal College of Psychiatrist, told The Telegraph.

“We don’t know whether Sars-Cov-2 does or does not [cause CFS/ME]. But we need to set up cohort studies of those infected by this agent as soon as possible, and follow people up for the short, medium and long term.”
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He's the one bringing up the brain. This isn't about what the virus does to the brain, no one is bringing that up other than psychosomatic fanatics like him. He just can't help make it about himself and what interests him. It may play a role, but there's nothing at all indicating that it is particularly significant until we actually do the work and he's already anchoring it where his personal interests lie, double entendre very much deliberate.

Anyway I thought he "retired" so why would his opinion even be asked on a topic he loudly "retired" from nearly 20 years ago and thus is not up-to-date on?

And there's no point in doing that with people like Wessely at the helm, it will be incompetent and biased to the hilt. We need competent work by real scientists who value science and are able to hold their personal urges in check.
 
Kalliope said:
As health care personnel are particularly vulnerable for the corona virus and Covid-19, I do hope they and their colleagues will be able to distinguish between PVFS and burnout should they still struggle after the infection is over. This text by Gerada made me a bit worried.

BMJ: Understanding burnout by Clare Gerada

Looking back, I had classic burnout. Burnout is formally defined as a state of physical, emotional, and mental exhaustion caused by long term involvement in demanding situations. For me it conjures up an image of “destroyed” individuals, shells of their former selves, damaged by the “fire” of their work that rages around them.
...

The covid-19 crisis is putting additional pressure on doctors and the health system in general. An Ipsos MORI poll has reported that half of workers already believe that their mental health has declined in the first two months of the crisis, and if covid-19 has even the same psychological impact as other major pandemics a vast number of key workers will need support.
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Looks like gaslighting begins at home in this family. Hell, it even begins within the self.

That's just sad.
 
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