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

Also Sterne from the SMILE trial:

Looks like Sterne this:

https://twitter.com/user/status/1363810861593341953


I don't know Sally Singh's rehabilitation work.

 

Applies to some of the unlucky ones here but it's also notable how the same issues are being discussed as if they were new, because none of those issues have been resolved and despite being common topics for us, we really aren't anywhere closer to having good answers. Describing these symptoms... so hard and yet absolutely necessary.

https://twitter.com/user/status/1402908571864551426

 

I don't know anything else about this

 

There are a couple of mentions of ME in this:
—-
https://www.peoplemanagement.co.uk/experts/legal/how-to-manage-employees-with-long-covid

How to manage employees with long Covid

10 Jun 2021 By Brian Palmer

Staff suffering from the effects of coronavirus months after contracting it may qualify as disabled, explains Brian Palmer

 

Starting to see a bit more MDs openly voicing support to do more. Bit of a mix between those aware of ME and those who buy the psychiatric framing, but it's rarely as simple-minded as "mind-body blah blah", which is significant progress. Of sorts.

https://twitter.com/user/status/1403075397789564930

 

In it for the Long Haul: More Questions than Answers on the Lasting Health Effects of COVID-19

(Paragraphs mine for legibility)

Most people with COVID-19 fully recover within weeks of the onset of their illness. But for some, the resolution of the acute infection is not the end of their COVID-19 journey. Some COVID-19 survivors have experienced new, returning or ongoing health problems (“sequelae”) that persist long after the acute illness. Viral infections can cause long-term sequelae, and there is increasing recognition that COVID-19 may cause persistent health problems in survivors.

As of June 1, 2021, there have been more than 170 million cases of COVID-19 reported worldwide, and the true number of infections is much higher—possibly more than one billion, including more than 100 million in the United States. If even only a small proportion of those infected develop long-term sequelae, this would create a significant public health challenge. There is a tremendously wide range of estimates of the proportion of COVID-19 survivors who experience long-term symptoms—studies suggest it could be from one in 10 to more than half.

We need to better understand how many people experience long-lasting symptoms in order to prepare for and address potential public health and societal impacts. Better understanding the spectrum of recovery from COVID-19 also will help us to care for and support those with long-lasting symptoms. It is critical that we increase vaccination and thereby reduce the number of people who get infected with COVID-19, which will also prevent lasting health problems due to COVID-19.​

https://preventepidemics.org/covid19/science/review/june-4-2021/

 

This is the author of the recent good BBC article "Why Long Covid will be a long haul", discussed here.

https://twitter.com/user/status/1403323200952582146


https://twitter.com/user/status/1403323949342208003

 

The presentation slides:

https://twitter.com/user/status/1403046344441409539


Edit: oh yeah, one of the recommendations is a federal advisory committee, I wonder if they are aware of what happened to the ME committee...

 

Typical.

https://twitter.com/user/status/1403731582935052289

 

They may be referring to this account:
https://twitter.com/LeanneRodders

 

Looks good! Here's a screenshot of slide 27 about ME/CFS

 

The slide nailed it, except for the part about pacing preventing severe ME. We don't really know that. It is however very sensible to recommend pacing.

 

Not a very nice read in the times entitled: Why is Britain now the capital of long covid?

https://apple.news/A-Qike_HcTKSHanFINYe3Ig

Apparently long covid is so prevalent in Britain due to the “chronic fatigue lobby”.

There’s many other appalling comments in this write up.

 

Podcast from Nature: Coronapod: counting the cost of long COVID

"The global burden of COVID-19 has predominantly been measured using metrics like case numbers, hospitalisations and deaths. But the long term health impacts are more difficult to capture. In this episode of Coronapod we discuss one way that public health experts are trying to get to grips with the problem using metrics such as disability adjusted life years (DALYs) and quality adjusted life years (QALYs).

As new data suggests that COVID could leave millions with lasting disability or ill-health, we ask how changing the lens through which we asses the impacts of COVID could change public health policies, the perception of risk and even the behaviour of individuals."

https://www.nature.com/articles/d41586-021-01603-w

 

Removing fatigue from the name would be a bit misleading since it is the main symptom. That being said, incorporating autonomic dysfunction / impairment into the nomenclature is a good idea. For example instead of CFS, call it CADFS - chronic autonomic dysfunction and fatigue syndrome.

One caveat being however if doing this might exclude some people who do not suffer from autonomic dysfunction. I am doubtful if there are such people though. I've noticed that almost every person with ME/CFS reports some kind of autonomic symptoms, be it postural tachycardia, low blood pressure, problems with temperature regulation, frequent urination, IBS / gastroparesis (don't forget digestion regulated by the ANS), etc. So yeah calling it CADFS might be a good idea.

 

@borko2100

There is a subgroup that don't have autonomic dysfunction, I didn't until 10 years into the illness after I had a relapse from reactivation of EBV and HHV6 at the same time. I also didn't experience PEM until years later.

It does appear that autonomic issues plays a role in PEM, but sometimes it's not noticeable until years later, at least it was for me.

 

https://twitter.com/user/status/1404061439392948227

 

Is the problem that it's a measure that is selectively trusted, or entirely dismissed when inconvenient? Because that's a huge problem. Our QALY has been measured many years ago and not a single medical or public health institutions gives a fig, they simply pretend it doesn't exist.

Rules, standards, oaths, they are all equally meaningless words somewhere on a computer if they can be arbitrarily trusted or dismissed based on personal whims and fancies. What this means is that they are universally meaningless, making the whole process completely arbitrary, with a pretense that keeps the dysfunction going. And that's actually two problems, big ones that feed on themselves.