News from Scandinavia

[mango]

Fairly long article on long covid today, in one of Sweden's largest newspapers.

It's a sympathetic and very informative article, but ME is again not mentioned (annoying, especially since Petter Brodin used to do research on ME).

Fyra år efter pandemins början: Inom ett år har vi läkemedel mot postcovid
https://www.dn.se/sverige/fyra-ar-efter-pandemins-borjan-inom-ett-ar-har-vi-lakemedel-mot-postcovid/


(Some of you might remember this interview with Brodin and Bruchfeld from 15 March 2023 where they expressed the same thing, they believe there will be a cure within a year/before the end of 2023.)

I just wanted to add that it's not just the media that is ignoring ME and PEM. I've been seeing some worrying comments on social media as well, by patients at the Swedish long covid clinics. For example, one of the main clinics that accepts pwPOTS (the cardio vascular centre at Karolinska Sjukhuset) has recently gotten a new physician, and this person "doesn't believe in" PEM. Many POTS patients (many of them have ME or long covid as well) have reportedly had their medications/prescriptions discontinued without comment or follow-up. I don't have any public/official sources to link, but I feel it's important to mention it anyway. I feel it's part of a bigger pattern/trend, and I don't like it.

 

[Amw66]

Fairly long article on long covid today, in one of Sweden's largest newspapers.

It's a sympathetic and very informative article, but ME is again not mentioned (annoying, especially since Petter Brodin used to do research on ME).

Fyra år efter pandemins början: Inom ett år har vi läkemedel mot postcovid
https://www.dn.se/sverige/fyra-ar-efter-pandemins-borjan-inom-ett-ar-har-vi-lakemedel-mot-postcovid/


(Some of you might remember this interview with Brodin and Bruchfeld from 15 March 2023 where they expressed the same thing, they believe there will be a cure within a year/before the end of 2023.)

Locked article . Thanks for the translation

 

[Midnattsol]

A well known influencer in Norway who has ME and who was previously on 100% disability pay, is going to take part in the reality show "16 weeks of hell". Which is 16 weeks of low energy intake and heavy workouts. I don't follow her, but as far as I know she has not said she is recovered just that she is able to work as an influencer since she can plan around her illness. I'm wondering how this will go... for her and not least am I worried about the potential backlash for other patients if she is able to complete the 16 weeks (being an influencer we would hopefully be able to see if she actually managed or not).

I'm glad the influencer is feeling better and strong enough to try this type of thing, and she is donating some % of her income to the team at Haukeland (Fluge, Mella, Tronstad) but... I'm very conflicted on how this will play out both for her health and for the general view of pwME.

 

[mango]

Swedish news segment today (audio, 2 minutes):

Fler drabbas av autoimmuna sjukdomar efter covid-19
https://sverigesradio.se/artikel/fler-drabbas-av-autoimmuna-sjukdomar-efter-covid-19

More people are suffering from autoimmune diseases after COVID-19

Many people have suffered sequelae of COVID-19. One explanation is that the number of autoimmune diseases has increased in the wake of the pandemic.

Autoimmune diseases can also come in the wake of other viral diseases such as influenza - but COVID-19 stands out.

Listen to Professor Artur Fedorowski explain what this means and why COVID-19 caused twice as many sequelae as influenza.

Correction: In an earlier version of this story, an incorrect figure was mentioned in relation to the number of people affected by autoimmune disease after COVID-19 in a Korean patient group. The correct figure is that 12 out of 1000 people developed some form of autoimmune disease in that group.

 

[mango]

Vetenskapsradion Hälsa: Det här vet forskarna om långtidscovid just nu
https://sverigesradio.se/avsnitt/vetenskapsradion-halsa

This is what researchers know about long-term covid right now

(Audio, 20 minutes)

More than 11,000 people have been diagnosed with post-covid after they sought specialist care in Sweden since the start of the pandemic. Lisa Norén is the first trial patient to test a covid medicine against post-covid.

Research is currently underway in Sweden, where a couple of hundred patients are receiving active drug treatment. The pill is actually only approved for acute illness with covid, but now it is also being tested against long-term covid.

Those who have palpitations as soon as they get up, after having mild covid19 - there are now different theories about what it is that affects the heart.

Hear about which treatments are underway.

Sympathetic and informative news segment/podcast episode. They are talking about long covid research, an ongoing Swedish Paxlovid study among other things. 124 participants have been recruited so far, they need 100 more. Results are expected this autumn. It's half-blinded, they have controls for Paxlovid, but everybody is getting Ritonavir. Primary outcome is a quality of life questionnaire, they need to improve "10 units" in order for it to be considered effective.

Dr Lisa Norén from the Swedish Covid Association, who is also a participant in the study, describes getting PEM symptoms (without mentioning PEM) after doing the 6-minutes walking test.

Judith Bruchfeld and Artur Fedorowski are interviewed too.

Fedorowski talks a little bit about POTS and they mention a few hypoteses of what might be causing POTS in pwLC:

• inflammation in the autonomic nervous system or the peripheral nervous system, which causes the blood vessels to lose their tightness
• anti-bodies are blocking receptors in the heart and the blood vessels from reading signalling substances correctly
• the vagus nerve might be affected, there might be a brain inflammation/in the central nervous system, which sends incorrect signals to the heart and the blood vessels

Fedorowski briefly mentions potentially treating this by trying to calm the immune system down.

There's also a short comment from the National Board of Health and Welfare, who are currently working on a guideline for post covid "and other post-infectious conditions" which they believe will increase the knowledge about these diagnoses among healthcare professionals in primary care. Expected publication is middle of August 2024. They also stated, in their written comment to the journalist, that it's "difficult to say whether the current knowledge about long covid is sufficient or not"... Norén disagrees, says it's clearly insufficient.

They also mention a guesstimate based on international data, 1 in 30 people or 3-5% of the population might be suffering from long covid presently. Which would add up to 300 000-500 000 persons in Sweden. The official number of people who have gotten specialist care for long covid in Sweden is 11 500, while 30 000 have received the diagnosis long covid in primary care. This would mean that 90% of pwLC in Sweden are undiagnosed and have not gotten any medical care..

Bruchfeld also emphasises that in order to be able to do proper research on this group of patients, there has to be somewhere to gather them (specialist centers), which is not possible when the politicians are closing down specialist clinics and sending people to primary care centers instead.

I believe the study they are talking about is imPROving Quality of LIFe In the Long COVID Patient (PROLIFIC)?
https://clinicaltrials.gov/study/NCT05823896

Forum thread for PROLIFIC here:
https://www.s4me.info/threads/swede...vid-patient-prolific-2023-brodin-et-al.33604/

ME is not mentioned, as usual.

(Sorry about my low-quality notes, PEM...)

 

[mango]

Juristen: Försäkringskassan fortsätter neka sjukpenning för utmattning
https://arbetet.se/2024/03/14/trots...n-fortsatter-neka-sjukpenning-for-utmattning/

Google Translate, English

Lawyer: Social Insurance Agency continues to deny sickness benefit for exhaustion

Despite a landmark judgement, the Swedish Social Insurance Agency continues to deny sickness benefit on the grounds that there is no clear evidence. This is according to Jimmy Laine, a lawyer who has handled several such cases. "Remarkable", he says of the agency's behaviour. [...]

ME/CFS is mentioned.

 

[mango]

News segment on a Swedish breakfast TV news show, 26 March.

Glädjande beskedet: Studie ger hopp om botemedel mot postcovid , 9 min 10 sek
https://www.tv4play.se/klipp/cbee04...et-studie-ger-hopp-om-botemedel-mot-postcovid

Good news: Study gives hope for a cure for post-COVID , 9 min 10 secs

Many Swedes are still suffering from the effects of COVID-19, known as post-covid. But there is hope for a cure. Karolinska Institutet is conducting one of the world's first studies to find a drug for post-covid. We are joined by Judith Bruchfeld, the senior physician and associate professor running this study, and Anja L Sundberg from the Swedish Covid Association.

They showed a few photos from the Swedish Covid Awareness Month social media posts (the Millions Missing rip-off campaign), very moving.

Sundberg talked about the fact that people are still falling ill and some are still getting worse, the pandemic is still ongoing. She also said that it's not true that only a few people are affected. She also mentioned that it's still difficult to be believed and respected by the healthcare system, and it might even be more difficult nowadays than it was earlier Currently only 4 out of 21 regions have long covid clinics, because the others have been closed down.

The study they are talking about is the Paxlovid one, led by Bruchfelt and Petter Brodin at Karolinska Institutet.

Bruchfeld says they are giving them the antiviral Paxlovid for 15 days. It's a controlled study. 130 participants have been included so far, people who are severely affected but they haven't been able to include anyone who is too sick to attend appointments at the clinic (so no bedbound people). They hope they can end the study this autumn. There's a 90 day follow-up. They are hoping that Paxlovid will help the patients get rid of the virus, if there is still covid-19 virus left in the body.

Bruchfeld says she believes it can maybe help a sub group, but she doesn't believe this is a "one size fits all" cure. She says it's likely that other mechanisms will need other medications.

They are still working on finding out what other mechanisms might be involved, besides virus. How the autonomic nervous system is affected, and how the innermost layers of the blood vessels are affected. And the cognition is majorly affected too, for example the memory function, the working memory and the executive function. They need to learn much more about what is going on, on the molecular level.

ME is not mentioned, as usual. Bruchfeld said that four years ago we didn't know this would happen, but there was reason to believe it because of how the disease was manifesting itself during the acute phase.

 

[mango]

Hanna har fått livet tillbaka
https://www.junia.se/livsstil/upptacklivet/hanna-har-fatt-livet-tillbaka/

Hanna has got her life back

[...] In March 2016, Hanna was diagnosed with ME/CFS, a neurological disease. ME is characterised by "PEM", which means effort-induced deterioration, both physically and cognitively and mentally.

- If you push yourself beyond your ability, you become temporarily or even permanently impaired. The doctors described the disease to me and told me that they could not offer any hope that I would be able to return to work, but that they hoped I would have a decent life.

Time passed and Hanna got worse and worse. [...]

- In the summer of 2021, I got even worse after a common infection. I couldn't sit up and eat, but lay down and ate mostly liquid food. It was too strenuous to chew. I was carried to and from the bathroom by my husband. [...]

On 7 January 2022, Hanna's husband was lying next to her, praying in a whisper like so many times before.

- Suddenly I saw a vision, much like a film playing in my mind as I closed my eyes. I was in a deep, dark, cold pit - with no way to get up. Then a hand with nail holes reached down and I realised it was the hand of Jesus. He grabbed me and pulled me out of the pit. I felt such gratitude, still in the vision, and hugged Jesus. He told me that he loves me and is proud of me. Then he turned round in the direction of the pit, filled it with earth and said: "You will never go down there again." Then we turned our backs to the pit and walked away hand in hand.

Hanna says that after the vision she was dazed and didn't really know what she had been through. She remembered some verses from the Bible in Psalm 40, verses 2-4: "I waited and waited for the Lord, and he stooped down and heard my cry. He drew me out of the pit of destruction, out of the deep mire."
- Tears flowed and I tried to tell my husband who realised that I was touched by something.

Hanna didn't notice any difference in her body right away, but based on her vision, she and her husband thought that the dark pit in her vision was the disease ME.

- The next day I experienced a tingling sensation over my head and especially in my head. It felt like a dentist's anaesthetic coming off. My previous blurred vision had eased, as had the constant headaches that had followed me over the years.

They decided to try to challenge Hanna's previous limitations. She tried standing and walking a few steps to the bathroom.

- "It was wobbly, but I didn't have any setbacks as the disease has always done in the past. I tried sitting for longer periods of time, opening the blinds and listening to music. Slowly but surely we realised that the miracle was a fact. [...]

And a paywalled article about the same person:

”När jag var som sämst kunde jag inte ens kommunicera, bara viska något ord”
https://www.dagen.se/livsstil/2024/...ag-inte-ens-kommunicera-bara-viska-nagot-ord/

"When I was at my worst, I couldn't even communicate, just whisper a couple of words"

For seven years, Hanna Zethson suffered from severe illness and was largely bedridden. But one day two years ago, she saw a vision in her mind. She saw Jesus and heard him speak.

 

[rvallee]

Not fundamentally different than the brain retraining or phone call epiphany people.

The most annoying part of this is that I occasionally see similar spontaneous recovery reports on the LC sub-reddit. This tells us something. However unlike the religious awakening story here, most of them report nothing special, it just happened, a sudden change. That we can't study those cases is maddening, because it's not done simply because there is nothing organized for things like that, no resources invested in it.

But it does tell us that there is a shift that can occur that tips people from ill to recovery, not fundamentally different than how people recover from acute illness, from other prolonged illnesses like pneumonia, or concussions. There is a biological process underneath it, maybe more than one.

Same thing with gradual recoveries. The vast majority report that it's simply rest and time. Some people will swear by this or that, especially the brain retraining people since evangelizing about it is part of the business model, but for at least 90% it's just time and an unseen biological change where recovery leads to more functioning, rather than the traditional psychosomatic explanations that take what happens after as its own cause.

 

[Eleanor]

That we can't study those cases is maddening, because it's not done simply because there is nothing organized for things like that, no resources invested in it.

It really is. There is so much we could be finding out, right now, if the official attitude didn't boil down to "go away, calm down and wait for it to blow over".

 

[mango]

Paywalled article in a local Swedish newspaper:

Småbarnspappa Henrik var utdömd av svensk sjukvård - men blev frisk av tysk behandling
https://www.smp.se/familj/smabarnsp...k-sjukvard-men-blev-frisk-av-tysk-behandling/

Father of a toddler Henrik was condemned by Swedish healthcare - but recovered with German treatment

He was in a wheelchair, had lost his sight and was condemned by Swedish healthcare. But after eight months at a German clinic, he gradually got better. Today, Henrik lives a normal life and is almost completely free of the incurable disease ME/CFS.

 

[mango]

The Amelie Clinic (Ameliekliniken, Jonas Axelsson) is closing down.

The Amelie Clinic hasn't posted the news on their website yet, but an open letter has been posted in a private Facebook group for patients of the clinic. The news has also been made public by others.

They are apparently closing because of financial reasons. Interestingly, there's no mention of the reviews by the Ethics Review Appeals Board (Överklagandenämnden för etikprövning, ÖNEP) or the Health and Social Care Inspectorate (IVO).

The letter's main message is:

Despite good treatment results - Amelie Clinic closes for financial reasons

[...] Unfortunately, there is currently neither sufficient staff nor funding, and we must therefore close the clinic. More information will be sent to affected patients in a separate letter.

(I'll post the whole letter later if I can find a public version.)

Do check out @MittEremltage's blog and podcast Maran for more background information. Forum thread here:
https://www.s4me.info/threads/5-mil...d-foundation-for-research-on-me-sweden.37595/

 

[mango]

The Amelie Clinic (Ameliekliniken, Jonas Axelsson) is closing down.

RME Stockholm has posted a comment on their Facebook page:

RME Stockholm can not express in words what we feel when we have now been reached by the information that the Amelie Clinic (under private management) is forced to close in our region.

With great expertise and eagerness to learn, Jonas Axelsson has been able to help many ME patients.

Region Stockholm is now almost completely without ME care for those who have been diagnosed and need further treatment.

We continue to fight for adequate care and will not give up, and we feel the same frustration as our members at present.

We will not back down - more meetings, dialogues, escalations have already been on our agenda since the beginning of the year and we see that we need to do even more!

RME Stockholm board

Intrestingly they too choose to not mention any of the reviews and investigations, nor the research done without ethical approval etc. No mention of patient safety issues or the importance of informed consent from patients taking part in research projects etc.

 

[Jaybee00]

How would you say “brain fog” in Norwegian? Is there a colloquial term and a formal term? Thanks.

 

[Midnattsol]

How would you say “brain fog” in Norwegian? Is there a colloquial term and a formal term? Thanks.

The term used is "hjernetåke".

Edit: I missed you asked for both a colloquial and formal term. "Hjernetåke" is used for both, and similar to in English there is discussion around how it may make the symptom sound more benign than it is, that it should be scrapped and that maybe something like "kognitiv svikt"/"cognitive impairment" (or other terms) should be used instead.

 

[mango]

A news segment on a Swedish morning TV show:

Nyhetsmorgon: Så drabbar postcovid barn och unga – ”Som att ha ett mobbat barn”, 10 min 1 sek
https://www.tv4play.se/klipp/fc6691...ovid-barn-och-unga-som-att-ha-ett-mobbat-barn

How post-covid affects children and young people - "Like having a bullied child", 10 min 1 sec

Expert doctors in Sweden estimate that around 10 000 children and young people in Sweden have some form of post-covid. Some are so ill that they are unable to go to school or meet friends. Yet there are only two regions [out of 21] in the whole country that have specialised knowledge of post-covid in children. Specialist doctor Lisa Norén has written the book 'Postcovid lottery - All the children', in which she interviewed researchers and doctors about the care of postcovid in children, as well as parents whose children are affected by postcovid.

ETA: Sympathetic and informative.

Estimated number of children and young people affected is 10 000, but only 600 have been diagnosed as of yet.

Severity is mentioned, some are homebound for years, unable to take a shower more often than once a week, etc.

Dysautonomia is also highlighted (different kinds of typical symptoms).

Important to listen to the children, what they are saying. Check their pulse. What happens when they exert themselves? Some get worse after exercise/PE at school, sometimes a couple of days later.

The mention of bullying in the title refers to the isolation that homebound children experience.

As always, ME is not mentioned. PEM is not mentioned.

 

[mango]

Swedish news article in a local online newspaper:

ME-patienter i limbo när vårdvalet slopades
https://www.mitti.se/nyheter/mepatienter-i-limbo-nar-vardvalet-slopades-6.26.216820.51b74b2116

ME patients in limbo when healthcare choice was cancelled

Patients with the neurological disease ME have been left in limbo. The clinic where they have been receiving care has cancelled the contract, after the region decided to abolish the choice of care.

Patients are instead referred to Karolinska's post-covid clinic. But only to get their diagnosis. Other medical care will be provided at the health centres.

But the post-covid clinic is not yet set up for all these patients. And neither are the health centres.

The Swedish Association for ME Patients calls the clinic a "diagnosis machine". In an interpellation to the regional council, the Conservatives in Region Stockholm write that medical care is "more or less disappearing for a fragile patient group" of around 3,000 people.

In a hurry

The reason for this is that the region decided to abolish the choice of care for patients with long-term pain, exhaustion disorder and ME/CFS. The contracts were due to expire in 2025, by which time the region should have received compensation in place.

But the only clinic in Stockholm for ME patients cancelled the contract prematurely.

The Moderates argue that the premise of ending choice of care is impossible for caregivers, as their employees quit when they realise their jobs could disappear.

2,280 visits

Talla Alkurdi (S), the regional health councillor, writes in her reply that 2,280 appointments per year have been ordered for the post-covid clinic, which health centres will also be able to turn to for consultation, but that the clinic will not be able to fulfil its full mandate until the end of 2024.

The specialist clinic that chose to close prematurely was Bragée ME Center, as most of you already know. Instead, they opened a private primary care clinic in Östermalm (described by Wikipedia as "an extremely expensive area, having the highest housing prices in Sweden.", known for "luxury, glamour, and affluence".)

 

[mango]

News segment (1 min 30 sec) on Swedish radio, about the new ME specialist clinic in Gothenburg.

ME-patienter har väntat på vård – nu öppnar regionens nya mottagning
https://sverigesradio.se/artikel/me-patienter-har-vantat-pa-vard-nu-oppnar-regionens-nya-mottagning

ME patients have been waiting for medical care - now the region's new clinic opens

ME patients have been without specialised care in the region since the beginning of the year.

But now a new specialised clinic will open to receive patients who need a diagnosis and rehabilitation.

Louise Samson, consultant physician and head of section, believes that the clinic can also provide support to primary care clinics.

 

[Sean]

But now a new specialised clinic will open to receive patients who need a diagnosis and rehabilitation.

Meet the new clinic. Same as the old clinic.

 

[mango]

LO-TCO Rättskydd AB: Kammarrätten gav person med ME/CFS (kroniskt trötthetstillstånd) rätt till sjukpenning
https://www.fackjuridik.se/kammarra...skt-trotthetstillstand-ratt-till-sjukpenning/

The Administrative Court of Appeal granted a person with ME/CFS (chronic fatigue syndrome) the right to sickness benefit

Insurance law
Published 14 May, 2024

ME/CFS is a diagnosis that leads to problems with significant fatigue and other problems that cannot be objectively measured. The doctor must therefore assess the need for sick leave primarily on the basis of the information provided by the patient.

In this case, a member of the Association of Church Academics had been denied sickness benefit by the Social Insurance Agency on the grounds that there were no objective examination findings and observations. The Administrative Court upheld the Social Insurance Agency's decision, but the Administrative Court of Appeal has now changed the lower courts' decision in the member's favour and refers to relatively new case law from the Supreme Administrative Court, which means that objective findings cannot be required when assessing entitlement to sickness benefit for illnesses based on symptoms or various criteria.

In the case, there was a description of the complaints from the woman and her partner that was consistent with what the doctor had been able to observe during the visit. The Administrative Court of Appeal also attached importance to an assessment by an occupational therapist that took place after the period of sick leave in question, as it concerned the same course of illness and similar complaints.