News from Scandinavia

My brother and law and his family live outside Stockholm.( jarfalla) His wife is Swedish .

Both her mum ( retired) and sister ( a nurse) have had long COVID since having COVID in March 2020.
Neither is getting better .Her mum was hospitalised twice and still suffers lung issues.

From time to time I WhatsApp links to info which may be helpful for them which are always gratefully received.

We have a Skype session with Scottish side of family around once a week. This week we asked how her mum and sister were doing and there is not much change .

Mum has good days and bad days - now it can be 2 good days and not alternate daily.
Sister cannot walk around the block.

I was a bit disturbed to hear that her mum was at a rehab clinic doing exercise when it sounds as if she has classic PEM.

Are there any Swedish info links that could help explain things ?

 

So sorry to hear that The Swedish Covid Association has some info material. Maybe contact them and ask? They are well aware of the risks regarding PEM, as well as the politics around the closing down and opening of new long covid clinics in the Stockholm region etc.

https://covidforeningen.se/material/

https://twitter.com/covidforeningen

Maybe @Anna H has some better advice or links to share?

ETA: Some recent opinion pieces on the political side of things:

https://www.dn.se/debatt/lat-staten-sta-for-specialistvard-till-langtidssjuka-av-covid-19/

https://www.dn.se/debatt/postcovidvard-i-huddinge-ger-fler-ratt-hjalp/

https://www.dn.se/debatt/lakare-maste-ges-central-plats-i-postcovidvarden/

There's also this blog post written by BPS extremist/resident physician David Gyll, who apparently was recently discovered sneaking around in Swedish long covid Facebook groups collecting information and trying to influence the dicussions... This link is for you, not something I'd recommend sharing with your relatives. (I've posted some of his published opinion pieces months ago in some other thread here on the forum.)

http://kognitivresonans.blogspot.com/2021/11/postcovid-langtidscovid-och-kometfenomen.html

If you're looking for information on PEM, there's some on RME's (the Swedish ME Association) website here:

https://rme.nu/om-me-cfs/pem/

And about CBT/GET here:

https://rme.nu/forbundet/rmes-verksamhet/rme-publikationer/rme-om-kbt-get/

 

Thank you.

 

@Amw66 I just now added two links about PEM and CBT/GET to my previous post. I hope that helps?

 

Thanks again
I' ll forward on.

 

@Amw66 Here's another Swedish BPS article on long covid, also by David Gyll (I believe he's currently the head of the long covid clinic in Uppsala?), if you want to have a look at what kind of BPS info your relatives are potentially being fed? Published in a journal/magazine for GPs.

Postcovid och det autonoma nervsystemet
https://allmanmedicin.sfam.se/1919/...90947/postcovid-och-det-autonoma-nervsystemet

 

Thanks @mango
Disturbing stuff

 

I'm so sorry to hear they are still suffering from Postcovid.

I think the info and links @mango has shared are great and can't think of anything to add. But then again my brain is so scrambled from Post-covid .

I do emphatize deeply with your family, me and my mom also still have post-covid after the initial infection in April 2020 and have similar experiences
Neither of us has been to a post covid clinic tough.

It definitely sounds disturbing with exercise being prescribed when there's PEM present. Its a good thing you know about the dangers and look out for them.
I hope they improve with time and can find treatments that help !

 

(I noticed that ME specialist dr Per Julin has signed the opinion piece by "20 employees at the Huddinge long covid clinic" linked above, so it seems to confirm the rumours that he's working there now?)

 

I have just had a thank you but perhaps a little guarded.

My sister in law asdvises that both her mum and sister are " lucky " enough to be at the only " covid" specialist department in Stockholm and part of the research there.

I don't know if that is good or bad .

 

Thank you.
I expect for her sister its particularly concerning being a nurse and watching this pan out.
The Ed Yong article in The Atlantic recently posted probably sums up the lack of belief and " penny dropped" feeling for her.

 

Are they at Huddinge? Huddinge post covid clinic has at least two physicians with a biomedical perspective, good understanding of PEM, and lots of experience from having worked at Stora Sköndal ME clinic: dr Per Julin and dr Anders Rehnström. I don't know anything about their views or understanding of long covid, though.

I wish I had something helpful to say... They are lucky to have you as a reliable source of real lived experience and knowledge

 

Hopefully they will improve. Good to hear that there are some clinicians who have experience.
It us sometimes hard to flag up things without sounding negative though .

 

I hadn't seen that. Yes, that looks promising to see Per Julin and Anders Rehnström involved. I might ask my GP for a referral to the Post-covid clinic in Huddinge.
Before Stora Sköndal closed down I was seeing Anders Rehnström. I really liked him as a clinician, what if got to see him again?!

I do feel lucky to live in Stockholm though.
In Sundsvall where my mom lives there's no post-covid care at all. And I guess that's true for most of the country.

Big thanks @mango for all the info!

 

(Not a recommendation.)

Video on the nature of chronic pain by Britt Bragée, co-founder of Bragée Clinics. (5 minutes, in Swedish)

"Today we know for sure that pain is related to past experiences [...]"

Spoiler: It's not an injury, it's the brain protecting us from danger... But the fact that there's no actual injury "isn't commonly known in healthcare, because patients don't want to talk about it for fear of being treated badly". "But it's not psychological, it's a protective mechanism like all other pain."

 

Björn Bragée on Facebook 5 days ago:

Code:

https://www.facebook.com/argadoktorn/posts/6811272625579360

 

Oh why, oh why did I watch this!!

 

Opinion piece in the journal of the Swedish Medical Association, written by Sten Helmfrid and the chairperson and the vice-chairperson of RME (the Swedish ME Association).

Låt NICE:s nya riktlinjer bli en vändpunkt för ME/CFS
https://lakartidningen.se/opinion/d...s-nya-riktlinjer-bli-en-vandpunkt-for-me-cfs/

Google Translate, English ("Let NICE's new guidelines be a turning point for ME/CFS")

 

Sten Helmfrid says on twitter that English translation is on its way

 

ME on Swedish TV this morning (video, 2 minutes, in Swedish). Not bad

About the new ME clinic in Umeå, Västerbotten. Stresses that the Region (the local government that is responsible for healthcare) takes ME seriously. Jonas Bergquist is featured, talks very briefly about their research into what causes ME, mentions that the immune system is activated and is affecting the nervous system, metabolites and the energy metabolism, etc.

I was pleasantly surprised by the (stock?) footage they used, for example a woman working in a lab, handling test tubes etc

Ny mottagning öppnar – efter debatterna: ”Tas på allvar”
https://www.tv4.se/artikel/4QRMZKH3...ar-efter-debatterna-tas-pa-allvar-av-regionen