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

How nice to see you're on the forum, @jonathan_h
Thank you for writing the column! It was great!

 

This was, apparently, recently posted on the Long COVID site for NHS Wales - another use of "pacing" to describe graded exercise.

Code:

https://youtu.be/gR1xdENmV0g

https://www.youtube.com/watch?v=gR1xdENmV0g

 

Very well done.

I'm sorry you became ill at such a young age

 

Article in a Swedish newspaper about Anna Amholt, a 20 years old professional ice hockey player who has been ill for more than 220 days. (ME is not mentioned.)

Aftonbladet: Coronasjuk i 220 dagar – läggs in på sjukhus
https://www.aftonbladet.se/sportbladet/hockey/a/kRRq8X/coronasjuk-i-220-dagar--laggs-in-pa-sjukhus

Hat tip to @Anna H for the link!

 

Great job Jonathan.

It must've been an energy sacrifice to write. Thanks for doing that.

 

The Sunday Times
'Half a million victims of long Covid' to be cared for in mini-hospitals

Article behind paywall, but there's a video interview with a health care worker describing her suffering from long Covid with fatigue, muscle ache, temperature etc.

 

New podcast from this Week in Virology today and at approximately 34 minutes in, dr. Daniel Griffin recommends listening to the previous episode on long Covid. Which is great, as there seems to be a lot of clinicians prioritising listening to dr. Griffin's weekly clinical updates, so hopefully there will be more of them listening also to the previous episode.

He says there is a large number of people who don't get over Covid in two weeks, that it's important not to gaslight. There's a lot of difference. Some people can do well by gradually increasing exercise, other people, if they increase their exercise too quickly, they get really horrible post exertional malaise and impact.

It is much more than becoming out of shape and they're still learning.

https://www.youtube.com/watch?v=bvZxgjLjiA4

 

Amy Small Retweeted

Long Covid Wales @LongCovidWales
·
14 Nov

Replying to
@LongCovidScot@lesleymacnivenand 2 others
@vaughangething@WelshGovernment

“You can't rehabilitate us if you don't know what's the matter with us! “

#DiagnosisB4Prognosis #LongCovid #CareforLongCovid

 

That hasn't stopped the quacks from trying to rehabilitate ME patients for decades.

Long-covid patients are slowing discovering the medical idiocies we've all had to endure even though they're part of a large, well-organised patient body. I feel for them.

ETA: there's been an interesting change in tone on the various Longhauler forums I've been following. Many of them were initially hopeful that the medical system would diligently investigate what is wrong with them. Now they are finding that they are often dismissed and ignored. There are plenty of posts about lazy, incompetent doctors blaming symptoms on "anxiety, asthma or allergies".

 

BBC radio Wales: The Long Tail – My Coronavirus Recovery: https://www.bbc.co.uk/sounds/play/m000p75r

Blurb: “Sophie Wilson is one of the thousands of people in the UK with ‘Long Covid’. She meets fellow sufferers and medical professionals in Wales in the search for answers.”

One of the Long Covid sufferers in the programme is S4ME’s John Peters.

In an email to me John wrote: “Perhaps you could pass on that I am missing the engagement on the forum as much as the discussions. I found in the early days of my Covid when I went on there I got sucked in and overwhelmed, so, much as I want to join in again, I'm going to wait a bit longer till I feel ready. It's been really bad missing these last few months with so much that has been going on.”

 

Source: Bring Me The News
Date: November 15, 2020
Author: Joe Nelson
URL:
https://bringmethenews.com/minnesot...ong-people-lose-taste-and-smell-from-covid-19

 

I thought the whole taste and smell thing was explained months ago?

 

It got more complicated. It isn't just loss of smell, medicine still hasn't caught up to phantom smells. They are in fewer numbers than anosmia but the effects are far more significant. People reporting they can't eat anymore, it makes them gag, because everything tastes like metal or rot or worse.

They are also quite common with ME, also not typically reported, but appear to be far more intense with Long Covid.

 

Doctor forced to give up her job after months of terrifying covid-19 symptoms calls for one-stop clinics
A doctor who was forced to quit job after getting covid-19 warns patients left to recover at home need specialist help, and not pushed into ‘exercise’ programmes that can make them feel worse in the long run.

https://www.edinburghnews.scotsman....id-19-symptoms-calls-one-stop-clinics-3036377

 

I'm seeing a dangerous trend that is essentially the very essence of the famous phase in Chernobyl: "Every lie we tell incurs a debt to the truth. Sooner or later that debt is paid.".

As medical care over acute complications of Covid becomes more capable, in some areas death rates seem to have fallen by half and more, the overall death rates fall down even as cases rise up. Which allows people favoring letting it run wild in the population to grow more confident that it's worth doing it. Either they don't know or can't even bother to care about long-term complications, chronic illness is trivial, easy-peasy, unlike ICU care, which is where "real medicine" happens.

All because the long-term complications are ideologically incompatible with standard medical dogma over post-viral illness. It's just "fatigue" after all, many people can justify anything with that. Or it's just anxiety. Yes, if the death rates fall, those anxieties will fall too.

Acute medical care learns quickly and significantly. It makes enormous difference over a few months as protocols are developed, along with some social adjustments like somewhat protecting the more vulnerable. But there hasn't been any progress whatsoever on the long-term complications, still flying entirely blind and unequipped to deal with whatever is ahead. If anything Long Covid is guaranteed to regress for a while to make place for all the same mistakes to be taken to their breaking point.

It's basically assumed to be trivial. Lots of work ahead, sure, but all that's needed is hard work. Working hard, not smart. Exactly how medicine completely screwed up chronic illness. Worst case it's "boom time" for the business of rehabilitation.

Decades of accumulated lies add up to a very significant debt. And it's due to be cashed soon. All at once. Oops.

 

Younger Adults Caught in COVID-19 Crosshairs as Demographics Shift

https://jamanetwork.com/journals/jama/fullarticle/2773055

 

Reflections of a COVID-19 Long Hauler

https://jamanetwork.com/journals/jama/fullarticle/2773056

We can only hope so. But hope without action isn't worth a damn.

Again, this thing where physicians have to experience a disease to appreciate it... not ideal. Extremely not ideal for any profession.

 

https://twitter.com/user/status/1327978280784453635

 

My understanding is that there are several respiratory illnesses that can cause this. I'm assuming that the pwME viral onset would have been respiratory in nature.