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 ?
 
Amw66 said:
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 ?
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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/
 
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mango said:
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
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Thank you.
 
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Amw66 said:
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 ?
Click to expand...
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 :confused:.

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 ! :hug:
 
Anna H said:
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 :confused:.

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 ! :hug:
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:hug::heart:

(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 .
 
Anna H said:
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 :confused:.

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 ! :hug:
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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.
 
Amw66 said:
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 .
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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 :hug:
 
mango said:
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 :hug:
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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 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?)
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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?! :):rolleyes:

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! :hug::hug:
 
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(Not a recommendation.)

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

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"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."
 
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Björn Bragée on Facebook 5 days ago:
Auto-translate said:
The poor ME care in the rest of Sweden surprises the world. This evening I received a call from the BBC in London. Guess if I thought it was a prank!

They wanted to know if there were more cases like Holger in Småland (a man who had been denied medical care). The journalist wanted to know more about our research, and was very surprised that we had managed to get a hearing in Parliament.

The English journalist was very accurate and well informed and wanted numbers also for doctors who thought the opposite of us, i.e. who think that ME is a cultural phenomenon, for example.

It's great that our region in particular stands out with good ME care with a waiting time guarantee and research. (ours ;)...)

It is a terrible truth that a lot of sufferers in Sweden end their (or their relatives') lives because of the care situation. Now international shame, that is.

I harangued the UK who take the stuff and the diagnosis seriously.
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Code: 
https://www.facebook.com/argadoktorn/posts/6811272625579360
 
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mango said:
(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."
Click to expand...
:banghead::banghead::banghead::grumpy::grumpy:
Oh why, oh why did I watch this!!
 
mango said:
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")
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Sten Helmfrid says on twitter that English translation is on its way

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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
Auto-translate said:
New clinic opens - after the debates: "Taken seriously"

Here, the controversial disease is classified as an accepted diagnosis

Between 10,000 and 40,000 Swedes suffer from the disease ME, according to researchers in Uppsala. The disease causes a host of symptoms, including severe fatigue, pain and heart and blood pressure problems.

The disease has been controversial and last year one of the country's few ME clinics was closed. But now the Västerbotten region is investing in a new clinic.

- The decision by the regional board that the region will work with this says it, that this is an accepted diagnosis, says Gabriella Eikelboom, at Norrland University Hospital's ME clinic.

"I've been really tired for a really long time" - meet Emma, who suffers from ME, in the player above.
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