News from Scandinavia

Sean · Dec 15, 2024

Most up-to-date professionals have long since shelved the Lightning Process.

Which raises the question of why the hell were they recommending such obvious methodological and ethical garbage in the first place?

Peter Trewhitt · Dec 15, 2024

Sean said: ↑

Most up-to-date professionals have long since shelved the Lightning Process.

Which raises the question of why the hell were they recommending such obvious methodological and ethical garbage in the first place?
Click to expand...

When Prof Crawley published her LP for children study, I thought it would be the reductio ad absurdum of the whole PACE type methodology, however the reverse happened (presumably via cognitive dissonance) and the BPS establishment embraced LP.

LP was so obviously a quack intervention, I foolishly thought ‘establishment’ researchers would realise with the LP study that their preferred methodology was so bad it would support any nonsense and thus undermine the identical rubbish studies advocating GET/CBT. However rather than abandon GET/CBT many have give st least tacit support for LP.

Sean · Dec 15, 2024

That study is the poster child for how fundamentally broken medicine is on this stuff.

mango · Dec 21, 2024

mango said: ↑

More bad news from Stockholm, which affects all of us since they are the only dysautonomia specialist clinic in Sweden. Not specifically about ME, but it is affecting many pwME. No official info yet, the Swedish Covid Association is looking into it.
Click to expand...

An important update from the Swedish Covid Association:

Goda nyheter om Hjärt-kärlmottagningen Karolinska
https://covidforeningen.se/goda-nyheter-om-hjartkarlmottagningen-karolinska/

Auto-translate said:

Good news about the Karolinska Cardiovascular Clinic

If you have been discharged from Karolinska's Department of Cardiovascular Medicine and do not feel that everything has been done correctly and safely, contact the clinic either via 1177 or via Alltid Öppet and let them know that you want to be readmitted. The doctors will then review your case again. If you do not get in touch, they will not do anything more, so it is important that you contact the centre.

Reasons for an incorrect discharge may include:

Your primary care doctor cannot/will not prescribe the medicine you need

The handover is not properly documented in your medical record so that the primary care doctor has the right information and can continue your medication

You are in an ongoing investigation that needs to be finalised

You have been asked to discontinue (i.e. reduce/stop) medication that works for you and that you want to continue

If you have been discharged to primary care and want to continue to receive help there, you can refer your GP to the Internet Medicine article on POTS. It has been fact-checked by some big names, so your doctor should take note of what it says: https://www.internetmedicin.se/kardiologi/posturalt-ortostatiskt-takykardisyndrom-pots

It is also important to report to the Patient Complaints Board if you are affected by an incorrect discharge, so that we can publicise the problem and get figures on how many people have been affected. It gives us weight and arguments in discussions with politicians and other decision-makers.
Click to expand...

Thank you so much for all your hard work, Swedish Covid Association!

@MittEremltage comments on this on her blog today:

Viktig information till personer med POTS som blivit utskrivna från Karolinska!
https://mitteremitage.wordpress.com...ed-pots-som-blivit-utskrivna-fran-karolinska/

mango · Dec 30, 2024 at 4:10 AM

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/

Auto-translate said:

The Swedish Covid Association is granted funding for patients with post-covid

Children and young people with post-covid often struggle to cope with school and other everyday activities, yet lack support from society. The Swedish Covid Association is therefore investing in a project aimed at supporting young people, and also adults, with post-covid. It has now been announced that the Swedish Inheritance Fund [Allmänna arvsfonden] will grant funds for three years.

- ‘We are very pleased to receive this grant, which will enable us to provide training and support to those affected. Our goal is to contribute to public education about our new widespread disease,’ says Lisa Norén, doctor and spokesperson for the association.

According to international research, about one per cent of children and young people are affected by post-covid, which means about 10,000 children in Sweden. For many, it means that life has changed drastically. Severe fatigue, headaches and difficulty tolerating exertion are very common.

The symptoms make it difficult to cope at school, spend time with friends or participate in leisure activities. Some people are so seriously ill that they are bedridden. Many of the symptoms of post-covid can be alleviated through treatment, making a big difference to patients. However, knowledge of post-covid varies across the healthcare system, as too few doctors have received training on this new widespread disease.

- Our members tell us how their previously healthy and active children have been pinioned by COVID-19, but still haven't received the help they would expect. Their lives are put on hold. Others I have met tell me how their children's illness has worsened due to the ignorance of the healthcare system,’ continues Lisa Norén.

Recently, the Swedish Inheritance Fund decided to fund the Swedish Covid Association's project ‘Health and good living conditions for people with post-covid’. This means that the association now has the opportunity to implement several supportive initiatives for those affected.

- The project is a good example of how to include and engage people affected by post-covid and how methods and activities can be developed by and for the target group. With support from the Swedish Inheritance Fund, new ideas can grow for a society where everyone can participate on equal terms,’ says Solveig McKenzie, Head of Unit at the Swedish Inheritance Fund.

The project has two branches, one focussing on children and young people and their families and the other focusing on people of all ages who have post-covid. One planned intervention is study circles for parents so that they can support their children/young people. The Swedish Covid Association will also develop school materials to help young people and their parents engage in dialogue with the school, in order to best adapt schooling.

Other activities planned include a helpline, customised self-care exercises and developing more information material on post-COVID. The Swedish Covid Association not only wants to support those affected but also to highlight post-covid as an important social issue.

- ‘We need to talk more about the fact that post-covid is a highly ongoing sequelae and not just a “residual problem”. If most people don't realise that hundreds of thousands are affected in Sweden alone, and how seriously the disease also affects children and young people, they won't get the right help. That's why this project is so important,’ says Anja L Sundberg, Vice President of the Swedish Covid Association.

Facts: Post-Covid

1 in 30 infections leads to post-covid, the general name for the various sequelae that can occur after COVID-19.

Post-COVID affects all ages, including children, and there are no clear risk groups.Even people who have had a mild COVID-19 infection can develop post-COVID.Some fall ill after their first infection, others only after their third, fourth or fifth.

Some people with post-COVID get better over time, but for many others it is long-lasting.

There is no cure yet.

We will soon start recruiting for positions within the project and more information will be available on the website shortly. Are you interested already? Send an expression of interest to: jobb@covidforeningen.se

The Swedish Covid Association is a patient organisation for those with COVID-19 and post-COVID. The association works for more patient-centred research, access to equal and evidence-based care and an adequate social safety net for those affected.
Click to expand...

News article (audio, in Swedish, 2 minutes):

Unga med postcovid ska få bättre stöd i skolan
https://sverigesradio.se/artikel/unga-med-postcovid-ska-fa-battre-stod-i-skolan

Auto-translate said:

Young people with post-covid to get better support at school

Young people with post-covid will now receive better support with their schooling, in a project funded by the Public Heritage Fund.

This is the first time that this kind of support has been given, focusing on children with long-term covid.

‘We are very happy to receive this grant, which enables pioneering efforts for education and support for affected children and young people and their families,’ says Lisa Norén, a doctor and spokesperson for the Swedish Covid Association, which has been granted funding for three years.
Click to expand...

The Swedish Inheritance Fund (Allmänna arvsfonden) is described by government.se as follows:

"If a deceased person has no spouse or close relatives and has not left a will, his/her property goes to the Swedish Inheritance Fund. The Fund supports non-profit organisations and other voluntary associations wishing to test new ideas for developing activities for children, young people, older people and the disabled."

More info here, in Swedish:
https://www.arvsfonden.se/om-allman...hur-kommer-pengar-in-till-allmanna-arvsfonden

mango · Dec 30, 2024 at 4:21 AM

On Swedish morning TV (9 minutes, available to watch online through the link below):

Artistens tuffa tid efter sjukdomen: ”Visste inte om jag skulle bli frisk”
https://www.tv4.se/artikel/5Ke8RoGL...a-med-postcovid-den-tuffaste-tiden-i-mitt-liv

Auto-translate said:

The artist's tough time after the disease: ‘I didn't know if I would recover’

150,000 Swedes live with post-covid - Eleonor Léone: ‘I could barely talk to my partner’

Eleonor Léone was in the midst of a successful music career when she was struck by COVID-19.

What initially seemed like a simple flu turned into a long and difficult battle with post-COVID.
After more than three years of rehabilitation, she has now found her way back to the stage - but the disease has left a deep mark.

- ‘I'm still not one hundred per cent recovered,’ she tells Nyhetsmorgon.

Approximately 150,000 Swedes are living with long-term and serious problems after contracting COVID-19, which means that the condition can be considered a widespread disease. Before falling ill, Eleonor led an active and energetic life with gigs, training and creative projects. But when she fell ill in May 2021, everything changed.

- ‘I could barely talk to my partner, and getting from bed to the toilet was a struggle,’ she says.

A long road back

What at first looked like a short-term illness became a protracted battle. Two weeks became months, and months became years. Eleonor lost touch with her friends and noticed her life gradually shrinking. The biggest loss was no longer being able to be on stage - a place that had always been her greatest joy.

- I lost everything that defined me. It felt like losing your whole life,’ she says.

To this day, Eleonor struggles with residual symptoms such as brain fatigue and heart palpitations. She describes how physical exertion often leads to setbacks with fever and cold symptoms.

- ‘I was part of a pressure chamber study at Karolinska and underwent ten pressure chamber treatments. I didn't get better from the study, but I wanted to share my experience to help others,’ she explains. [...]
Click to expand...

Kalliope · Dec 30, 2024 at 10:26 AM

mango said: ↑

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/

News article (audio, in Swedish, 2 minutes):

Unga med postcovid ska få bättre stöd i skolan
https://sverigesradio.se/artikel/unga-med-postcovid-ska-fa-battre-stod-i-skolan

The Swedish Inheritance Fund (Allmänna arvsfonden) is described by government.se as follows:

"If a deceased person has no spouse or close relatives and has not left a will, his/her property goes to the Swedish Inheritance Fund. The Fund supports non-profit organisations and other voluntary associations wishing to test new ideas for developing activities for children, young people, older people and the disabled."

More info here, in Swedish:
https://www.arvsfonden.se/om-allman...hur-kommer-pengar-in-till-allmanna-arvsfonden
Click to expand...

That's wonderful news, and a huge amount of money! Also wonderful that this work will be done by the Covid Association, and not BPS people. I wonder if they'd be interested in cooperating with, or building upon the work done by the Norwegian ME Association who developed a course for teachers about pupils with ME. It's also in Swedish version.
https://www.meochskola.se/

mango · Jan 2, 2025 at 4:31 PM

mango said: ↑

Good news, for a change

Press release:

Svenska Covidföreningen beviljas stöd till patienter med postcovid
https://covidforeningen.se/svenska-covidforeningen-beviljas-stod-till-patienter-med-postcovid/
Click to expand...

Läkartidningen: Covidföreningen startar nytt projekt för att stötta unga med postcovid
https://lakartidningen.se/aktuellt/...tt-projekt-for-att-stotta-unga-med-postcovid/

Auto-translate said:

Covid Association launches new project to support young people with post-covid

The Swedish Covid Association wants to support children and young people affected by post-covid by producing school materials for adapted schooling. The project has now been granted funding from the Swedish Inheritance Fund for three years.

- ‘We are very pleased with this grant, which will enable pioneering efforts in education and support for those affected. Our goal is to contribute to public education about our new widespread disease,’ said Lisa Norén, doctor and spokesperson for the association, in a statement.

‘Children and young people with post-covid often have difficulty coping with both school and everyday activities, but still lack support from society,’ writes the Swedish Covid Association in a press release. Therefore, the association wants to support both children and adults affected by postcovid in a new project. Thanks to money from the Swedish Inheritance Fund, the association is now planning to produce school materials to help students and their parents to engage in dialogue with schools and to adapt their schooling in the best possible way. It also wants to organise study circles for parents to give them better tools to support their children. A new helpline is also on the agenda for the future.

According to the Karolinska Institute, up to 150,000 Swedes are living with long-term serious problems following a COVID-19 infection. The Swedish Covid Association estimates that around 10,000 of those affected are children.
Click to expand...

Log in or Sign up

News from Scandinavia

Sean Moderator Staff Member

Peter Trewhitt Senior Member (Voting Rights)

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Share This Page

Log in or Sign up

News from Scandinavia

Sean Moderator Staff Member

Peter Trewhitt Senior Member (Voting Rights)

Sean Moderator Staff Member

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Kalliope Senior Member (Voting Rights)

mango Senior Member (Voting Rights)

Share This Page

Useful Searches