News from Scandinavia

Public online event: Säg som det är - Samtal om ME. Vem kan hjälpa när botemedlet saknas?
("Tell it like it is - Conversations about ME. Who can help when there is no cure?")

The Liberals in Region Jönköping are organising a public online event this Friday, 27 November.

Thread about very severely ill Holger here.

The ME center in Linköping is problematic (bps), so I'm not sure how helpful the conversation will be? I also noticed that there is no representative from the patient organisation on the panel.

 

There has been a change, Anders Kjellgren from Linköping will not be attending.

The Liberals have posted an update on Facebook:

 

The Swedish ME Association RME says on their facebook page today that Stora Sköndal is going to close.

Stora Sköndal is a big foundation just outside Stockholm that works with several different patient groups, including ME. For several years they've had a ward accepting ME patients from all over Sweden for assessment, treatment and followup, both adults and children. A while back there were so many ME patients that wanted to come to them, they had to stop accepting new patients for several months until they could hire more people. They've also been involved with research and been active participants at conferences spreading updated knowledge about ME.

I am not sure if it's the whole foundation or the ward for ME patients specifically that will be closing.

Does anyone have more information about this?




A thread to discuss this closure is here:
Sweden: Stora Skondal to close

 

Update posted yesterday by Liberalerna:

 

The webinars are now available on the Norwegian ME Association's YouTube channel.

Here's the webinar that was in English with professor Peter Rowe as lecturer. It's titled: Management of paediatric ME/CFS: Insights from the Johns Hopkins clinic. Duration: 1H 7 minutes.

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

 

Article in Läkartidningen, the journal of the Swedish Medical Association:

Inflammation, långvarig trötthet och värk – uppdatering av kunskapsläget
Lars-Gunnar Gunnarsson, Per Julin, Torbjörn Norén

https://lakartidningen.se/klinik-oc...otthet-och-vark-uppdatering-av-kunskapslaget/

Google Translate, English

ETA: Not a recommendation! I always expect something good when I see Julin's name on something, but this is... highly disappointing

For example, they claim that PEM is not unique to ME, that it is common in fibromyalgia too. And the reference is an article by Nijs et al titled "Fear of movement and avoidance behaviour toward physical activity in chronic-fatigue syndrome and fibromyalgia".

 

Yes, I was just reading the article, and thought there were good things as well, but was confused regarding PEM being typical for both ME and fibromyalgia..


Here's an illustration of the overlap from the article.

 

I don't know much about fibromyalgia, but I'm far from convinced PEM is unique to ME. It is difficult though when so much depends on how different people describe subjective aspects of their own health problems.

 

A severely ill Swedish 15 year old girl is about to be removed from her family/home

The mother writes in the comments that her daughter has been diagnosed by a specialist, but the social services are only listening to an ignorant pediatrician at the hospital.

 

Public online event hosted by the Swedish EDS/HSD organisation:

Webinar: Överrörlighet, ME och förträngningar i halsryggen
("Webinar: Hypermobility, ME and craniocervical obstructions")

Monday, 7 December

 

The Norwegian ME Association has published the recording of a recent webinar of theirs: Prof Jonas Bergquist talking about his research and the metabolic trap hypothesis (44 minutes, in Swedish).

https://www.youtube.com/watch?v=HwQR3Whwvw4

 

The slides seems to mostly be in English.

 

Radio interview with Swedish award-winning crime fiction author Karin Alvtegen. In Swedish, 16 minutes long.

P4 Extra - Gästen: Karin Alvtegen lyckligare än förut – trots svåra sjukdomen
https://sverigesradio.se/avsnitt/1634453

 

Holger, a man in Sweden with very severe ME, is about to get sectioned Is there anything we can do to help?

Theread here:
https://www.s4me.info/threads/‘help...sh-man-with-very-severe-me.15874/#post-308197

 

A new Swedish non-fiction book about ME is to be published soon. It's written by a journalist who got ME, became bedbound, and is now running marathons, thanks to Rituximab. The title is "Från sängbunden till maraton eller Den stora ME-skandalen" ("From Bedbound to Marathon, or The Great ME Scandal").

This is not a recommendation, just info. I haven't read the book.

Björn Eklund, Från sängbunden till Stockholm maraton
https://www.vangavan.se/2020/12/bjorn-eklund-fran-sangbunden-till-stockholm-maraton/

 

A paywalled news article about Björn Eklund's upcoming book about his recovery from ME, through Rituximab.

Sundsvalls Tidning: Valet stod mellan osäker medicin och dödsklinik – efter tio år vann Björn kampen mot sjukdomen
https://www.st.nu/logga-in/valet-st...-efter-tio-ar-vann-bjorn-kampen-mot-sjukdomen

The heading suggests that he had to choose between an unproven/risky medicine and a suicide clinic, and that he won over the disease after 10 years.

It says that Ekund had his two first Rituximab treatments in Sweden, and the rest at Kolibri in Norway. He says "I felt it ease up after the first treatment sessions, so I took a chance and increased the dosage by a lot." Eklund says in the article that he believes the reason why Rituximab didn't work [in the research study] was that the dosages were too small.

I've seen this mentioned on social media before, by several Swedish people who got their Rituximab treatment through Kolibri, that they doubled the dosage or more (up to 4 x 1000 mg).

It also says that he was treated with antivirals by a Swedish doctor, after Rituximab, which he says made him feel even better.

 

This book is going to be very unhelpful to the ME cause but it is a free world.

Increasing the dosage makes little scientific sense. There are reasons to think the usual dose may be anything between two and ten times too high already, although at least one formal study and my own pilot studies suggest that efficacy does drop to a small degree with lowered doses. Going higher is hard to justify. Moreover, it is extremely unlikely that no effect (as in phase III) would be observed at standard dose if the drug had some efficacy.

A benefit from both rituximab and antivirals again makes no scientific sense. If viruses were thought to be involved rituximab would be contra-indicated. But this combination was floated by US physicians some time back and I think probably used off label.

 

This is interesting.
I read that EBV is hosted by B cells, and Rituximab is taking them out. Wouldn’t that create a clear connection, insinuating improvement from Rituximab could be from deleting EBV hosted B cells?

 

Not really, since we all have EBV in our B cells and it doesn't matter.