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

[Snow Leopard]

Perhaps the whole "post-" terminology is a bit... flawed.

This suggests a relapse-remitting course is not uncommon.

Pure speculation, but there are two conclusions of the relapse-remitting course - periodic activation of the virus resulting in further stimulation of the immune system, or suggestions that the dysregulation occurs during the healing processes, rather than simply as a result of viral induced damage during the initial infection.

Does that mean that patients would still be infectious?

I think we need to stop looking at infectiousness as a binary, and look it as a risk function relative to behaviour and viral load in upper respiratory tract.

 

[Sasha]

I think we need to stop looking at infectiousness as a binary, and look it as a risk function relative to behaviour and viral load in upper respiratory tract.

My question still stands, though - do Long Covid patients need to continue to isolate? Patients need to know how to behave to protect others.

 

[Snow Leopard]

My question still stands, though - do Long Covid patients need to continue to isolate? Patients need to know how to behave to protect others.

I'd suggest no, they don't. There isn't much evidence suggesting long covid patients have prolonged high viral loads.

 

[Jonathan Edwards]

My question still stands, though - do Long Covid patients need to continue to isolate? Patients need to know how to behave to protect others.

Maybe Snow Leopard's point is that there is no simple answer. If they have tested negative on a good test and repeatedly probably not, otherwise it is a matter of probabilities, with the chance of being infective being small but not zero.

 

[Sasha]

Maybe Snow Leopard's point is that there is no simple answer. If they have tested negative on a good test and repeatedly probably not, otherwise it is a matter of probabilities, with the chance of being infective being small but not zero.

But are any Long Covid patients being offered repeated PCR tests? I haven't heard of that happening, and there seems to be a huge number of such patients. And they seem to be being told by their GPs that they're no longer infectious. They're not being given the opportunity to make a judgement about the risk to their families and whether to continue to self-isolate (and for those who live alone, that's a genuine option).

I'm surprised not to have heard more about this.

 

[Snow Leopard]

But are any Long Covid patients being offered repeated PCR tests? I haven't heard of that happening, and there seems to be a huge number of such patients. And they seem to be being told by their GPs that they're no longer infectious. They're not being given the opportunity to make a judgement about the risk to their families and whether to continue to self-isolate (and for those who live alone, that's a genuine option).

This is an interesting point. Especially those early on (Feb/March/April), were struggling to get one PCR test, let alone followups.

In Australia, things have been a little different - patients have been tested multiple times as our governments have focused on making sure people are not infectious before they can exit quarantine. But I haven't heard much from LongCovid patients in Australia. A 2.5% incidence would lead to a not insignificant 700 patients, but that is Australia-wide...

 

[Sasha]

In the UK, all I've heard about is that if someone gets a positive PCR test they have to isolate for 14 days and then that's it - they can go back to normal.

But should Long Covid patients be seeking PCR testing as their symptoms continue? Particularly if those symptoms are viral and are flaring up?

 

[Snow Leopard]

But should Long Covid patients be seeking PCR testing as their symptoms continue? Particularly if those symptoms are viral and are flaring up?

The latter part ('if those symptoms are viral') is a circular argument. But you are right, without ongoing testing we don't know whether there are people who have a sustained infection, or have proof that they aren't infectious.

One key point I'd like to make is that while such ongoing infections are probably unusual (due to underling immune system issues), if you have 1+ million cases, then those 'rare' cases all start to add up...

 

[ukxmrv]

Does that mean that patients would still be infectious?

There was a radio doctor commenting on the vaccine who said that if someone already had the virus in their nasal area or picked up the virus in the area after the first jab then they could still pass it on.

(I missed who it was being interviewed but likely to be radio 4. There is so much information coming out that I can't keep up with it)

 

[Jonathan Edwards]

In the UK, all I've heard about is that if someone gets a positive PCR test they have to isolate for 14 days and then that's it - they can go back to normal.

But should Long Covid patients be seeking PCR testing as their symptoms continue? Particularly if those symptoms are viral and are flaring up?

All I think one can say in the UK is
1. We know that the great majority of people stop being infectious after about 10 days
2. The UK testing systems a shambles, being organised by incompetent commercial services rather than the NHS. Nobody is likely to be tested when they need it. Quite often when they don't.

 

[Dolphin]

Given all the interest in Covid-19, I presume there has been quite a bit of repeat testing of Covid-19 patients somewhere. If a significant percentage were showing up as positive on the normal tests and it suggested they were infectious, I think we’d hear more of it given all the efforts to control the spread and given some countries like New Zealand and Australia are aiming for zero cases.

 

[Dolphin]

From: Dr. Marc-Alexander Fluks


Interesting Covid-19 paper, translated from Dutch to English,

https://translate.google.com/transl...ne.nl/artikel/en-als-de-terugval-niet-meevalt

This paragraph might be important to PWCs,
About ten percent, an international team of researchers showed,
also produce antibodies against one of the weapons that the
body itself uses against that virus, type 1 interferon. It is
to be expected that these autoantibodies will again undermine
the immune system in a new infection, says Andras Spaan, a Dutch
medical microbiologist who worked on the study at Rockefeller
University. 'That is why we also warn against administering
blood plasma with antibodies from these patients.'
And then the immune system in some people would not be able to
suppress a second infection better, but worse. Antibodies may
bind to the virus, but will not disable it, or even help it.

...10% of EBV-patients (glandular fever) come down with ME/CFS
and interferon is important too...

 

[rvallee]

Editorial from Nature Medicine


Meeting the challenge of long COVID

https://www.nature.com/articles/s41591-020-01177-6

In formulating the response of the healthcare system to the COVID-19 pandemic, the true toll of the chronic consequences of SARS-CoV-2 infection must be uncovered and strategies must be devised for providing integrated care to those with long-term illness.

These patients, the so-called ‘long haulers’, report a wide variety of symptoms—extreme fatigue, muscle and joint pain, breathlessness, heart palpitations, loss or alteration of taste and smell, gastrointestinal distress, and problems with attention, memory and cognition. Although considerable progress has been made in treating the acute phase of SARS-CoV-2 infection, very little is known about the chronic impact of infection, which has come to be called ‘long COVID’.

Many different types of viruses can cause long-term illness, and from this perspective, the phenomenon of long COVID is hardly surprising. For example, infectious mononucleosis caused by Epstein–Barr virus can lead to persistent symptoms, and Guillain–Barré syndrome is a chronic neurological condition that can arise after viral infection. But what sets the SARS-CoV-2 virus apart is the sheer number of infected people and the damaging effects of infection on multiple organ systems, including the lungs, liver, brain, kidneys and heart. Research is urgently needed to delineate how SARS-CoV-2 infection can trigger this type of multifaceted syndrome.

Then why it is still completely surprised? This is true but in direct conflict with how medicine generally reacted. The surprise has not lifted, it is not a thing of the past. And yet it was predictable. That needs to be reconciled. Fast.

Care for patients with long COVID also needs to grapple with the reality that these patients can have a wide range of symptoms that would typically require the involvement of multiple types of specialists, which can result in a logistical nightmare for the patient seeking diagnosis and treatment

And those with the other diseases that aren't a surprise? Nothing? OK. Smart.

Centers for the treatment of patients with long COVID that provide care spanning multiple medical specialties are now springing up, such as the Center for Post-COVID Care, at Mount Sinai hospital in New York City, and the Post-COVID Assessment and Recovery Clinic at Penn Medicine. Most recently, on 15 November 2020, the UK’s National Health Service announced the launch of 40 clinics for the treatment of long COVID.

Right idea but those clinics have not been especially impressive so far.

But only with an understanding of the prevalence of long COVID and the chronic health consequences of SARS-CoV-2 infection will it be possible to determine the true impact of the pandemic and to adapt healthcare to effectively diagnose, monitor and treat patients over the long term.

Not the other things that should have made Long Covid not a surprise, though? I mean if this is hardly a surprise and similar? No? Oh well.

Really circling the hoop but never quite falling into it. At least the ideas are right, it would just be swell if they could be... informed. Yes, that would be really great with all the science and the smart people doing hard work and all of that. It would be great to be informed about ruinous diseases, certainly better than misrepresenting and discriminating until the problem grows so big it's impossible to keep shoving it a corner.

 

[rvallee]

Long Covid and the role of physical activity: a qualitative study

https://www.medrxiv.org/content/10.1101/2020.12.03.20243345v1

This study provides insight into the challenges of managing physical activity alongside the extended symptoms associated with Long Covid. Findings highlight the need for greater consensus around physical activity-related advice for people with Long Covid and improved support to resume activities considered important for wellbeing.

Haven't read it but have seen some positive comments. Pre-print.

 

[Dolphin]

Long Covid and the role of physical activity: a qualitative study

https://www.medrxiv.org/content/10.1101/2020.12.03.20243345v1



Haven't read it but have seen some positive comments. Pre-print.

Parallels have been drawn between Long Covid and myalgic encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS) (23). Recently, NICE withdrew a recommendation to prescribe graded exercise therapy for patients with ME/CFS following concerns it could cause harm to some patients (24). It is imperative to establish consensus, adding to what is already known (14) regarding PA-related advice specifically for people with Long Covid, including the identification of individual phenotypes for whom PA might or might not add value to their recovery.

 

[rvallee]

Very influential senator with close ties to Biden:

 

[rvallee]

That letter was great. And it's an actionable plan with clear intent. The numbers, about $170M in total, are a good start to build a foundation for future research.

 

[Sly Saint]

Long Covid: Your questions answered by an expert studying the condition

We spoke to Professor Frances Williams, who is part of the team at Kings College London (KCL) overseeing the Zoe Covid Symptom Tracker app study, which has produced findings about who is most at risk of long Covid. With over 4.4 million app users, their latest research focused on data from 4,182 who consistently reported their health and tested positive for Covid through swab PCR testing.

The many similarities between long Covid and ME (myalgic encephalomyelitis)/Chronic Fatigue Syndrome has generated medical debate. The exact cause of ME is unknown, but, a viral trigger is strongly suspected, and exercise can easily trigger an intensification of symptoms in both illnesses, at least in a subset of people with long Covid.

With ME, there is wide variation in recovery times: some people recover in less than two years while others remain ill after several decades. According to the ME Association, those who have been affected for several years seem less likely to recover; full recovery after symptoms persist for more than five years is rare

https://inews.co.uk/news/health/long-covid-what-coronavirus-symptoms-women-bmi-age-signs-783948

given that we are all being told 'long-covid' is a 'new' condition, I'm not sure how anyone can call themselves an 'expert' yet .......unless of course they are at KCL.

 

[Mij]

"The exact cause of ME is unknown, but, a viral trigger is strongly suspected" They can't call themselves 'experts' on ME either. It's quite well known now that a viral or bacterial triggers ME, at least over 70% pwME have reported this.

 

[Wonko]

But they aren't medically qualified to make such an assertion, and those that are, in light of their suffering from ME, biased, and can safely be ignored by 'experts'.