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

Article about LongC & the Covid Symptom Study by King's College.

This was new to me:

"The King's researchers have created a piece of computer code to pick out, from the start of a coronavirus infection, who is at risk of long Covid.

It is not perfect. It correctly identifies 69% of people that go on to develop long-Covid, but also tells around a quarter of people who would recover quickly they would get long Covid too."

From what I've read on Twitter there is much criticism about the study design, many people simply stopped typing in their data because they either didn't find their symptoms represented or just gave up in general. So maybe there's a lot more people being sick after 12 weeks...

The article also refers to this awarness film by the government.

 

I am surprised there is no history of childhood abuse’ in their risk factors. Maybe that will come later (sarcastic tone)

 

Being a young woman should be enough to do the job. And being married. Or not. And having children. Or not. ;-)

 

3 doctors with long-covid interviewed on itv news meridian last night; no mention of ME/CFS.
Re mental health of health professionals in NHS; largely due to being overstretched. ie the NHS was hugely understaffed before the pandemic, now it has even less docs, nurses etc (600 died from covid and many more off-sick): no amount of psych therapies will fix that.

Long Covid: Doctors among hundreds suffering from debilitating condition

full article and video here:
https://www.itv.com/news/meridian/2...undreds-suffering-from-debilitating-condition

 

I wonder if their 'prescription' will be to go to the mall and "buy something nice" like I was told by an ER doctor.

Btw, I have always bought myself something nice, but it didn't prevent me from becoming ill.

 

https://twitter.com/user/status/1318824343556755456

 

“We just don’t know what’s happening in our bodies”: Covid-19 long-haulers are still suffering

https://www.vox.com/21523448/covid-long-term-effects-symptoms-damage

It sure would be great if people did just that. Sure looks like a lot of people in high places are expecting answers to come about magically without doing the work. Which is certainly familiar.

Unfortunately uncharted entirely by choice. People have to start realizing that or nothing will happen to change what is usual practice of just hoping the problem magically goes away.

 

I'm wondering what treatments are available for long-haulers if testing doesn't indicate a treatable problem? If it's post-infectious, then most doctors can't really do much at this point except wait it out because they won't know what's going on with their bodies either. They can treat insomnia, pain etc in the meantime though.

 

Exactly. I suspect most of the doctors talking about rehab are actually talking about making stuff up as they go along, in the hope of stumbling on something that (a) doesn't make patients complain too loudly, or (b) makes them go away altogether, so they can be ticked off as 'recovered'.

 

Theguardian aticle building on what Andy and Leila referenced

https://www.theguardian.com/world/2...t-greatest-risk-of-long-covid-experts-suggest

No mention of post-viral fatigue syndrome or ME/CFS in the article.

 

Help Is Out There for COVID ‘Long Haulers’
Clinicians should draw on knowledge surrounding chronic fatigue syndrome in treating patients suffering from the lingering effects of COVID-19.

https://www.usnews.com/news/healthi...ulers-knowledge-and-empathy-are-key-to-a-cure

 

At 12, She’s a Covid ‘Long Hauler’ - New York Times

by David Tuller

https://www.nytimes.com/2020/10/22/well/family/coronavirus-symptoms-kids-children-long-hauler.html

 

https://www.express.co.uk/life-style/health/1350852/covid-symptoms-long-covid-signs-linger-two-weeks

COVID symptoms: The seven signs you could be suffering from ‘long-Covid’

CORONAVIRUS continues to dictate the way the world behaves. Those lucky enough to have survived an infection seemingly unscathed may have lingering symptoms. What are the signs of 'long-Covid'?

By CHANEL GEORGINA
PUBLISHED: 08:57, Thu, Oct 22, 2020 | UPDATED: 09:40, Thu, Oct 22, 2020

 

When the Doctor Is a Covid ‘Long Hauler’

https://www.nytimes.com/2020/10/21/well/live/when-the-doctor-is-a-covid-long-hauler.html

Mostly about POTS. That doctor does not seem aware that POTS, and generally dysautonomia, are generally treated like garbage in the vast majority of cases, seems to extrapolate from her exceptional experience of not being dismissed, gaslighted and insulted that this is the norm. Very misleading, IMO. It also recommends physical reconditioning without being aware of exertion intolerance, which as far as I can tell is still not acknowledged by any medical authority, not officially anyway, thus making this very dangerous for those with PEM.

I really don't see how. A few fortunate ones have a not-so-horrible experience but for most of us we only get frowny puzzled faces that quickly redirects to "anxiety" about this "syndrome of yours".

Not very aware of how most people can't simply casually do their job from home, reclined and with money to pay the bills coming in nicely. Very rosy picture, to the point of misleading, of the experience of most POTS/dysautonomia patients. Which hopefully will improve in the coming months and years but for now this is a very aspirational fantasy that simply does not exist in most cases.

 

COVID-19 effects can be persistent and serious say doctors suffering 'long COVID'

https://www.abc.net.au/news/health/...arn-long-term-effects-can-be-serious/12785934

 

https://twitter.com/user/status/1319583893465538560

 

COVID-19 effects can be persistent and serious say doctors suffering 'long COVID'

ABC

https://www.abc.net.au/news/health/...arn-long-term-effects-can-be-serious/12785934

 

SVT: 25 000 svenskar kan ha långtidscovid
https://www.svt.se/nyheter/vetenskap/25-000-svenskar-kan-ha-langtidscovid

 

Now they just need to get their heads around the fact that the apps were problematic, some users gave up because, despite complaining that many of their symptoms weren't included in the app and were too cumbersome to keep manually adding in every day, they were ignored.

By the very questions they asked they made certain assumptions (inevitable) and they need to bear that in mind as it may have meant that some information of unknown importance was lost. It's very important that they don't become blinkered by their initial assumptions.

Let's hope they remember that causation ≠ correlation.

Let's also hope they remember that keeping people from further harm is as important as helping people and that it would be a refreshing change to actually use the information gathered to improve medical and social care rather than as a tool to deny access care and benefits.

They have some information but not all.