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.
Google Translate said:
The Liberals in the Jönköping County Region invite to an open digital conversation on the theme ME

How can medical care, care and service be better for those with a ME diagnosis? In order to change, we must listen to those who live with the disease in their everyday lives. It is vital that we listen to those who know.

The situation for individuals living with the diagnosis ME (myalgic encephalomyelitis) is regularly updated. Today, 40,000 people in Sweden are assumed to be ill with ME.

In connection with the current corona pandemic, the rules of the game are also changing. Many who have suffered from covid-19 have had long-term but of the disease and need rehabilitation. ME has a known connection with virus outbreaks and may therefore increase drastically in the wake of the pandemic.

In Jönköping County, Holger Klintenberg and his relatives put ME on the regional map during the year by telling about the unsustainable situation they are in.

Relatives of those living with a diagnosis of ME regularly testify about the suffering of the disease. Formerly viable and active people are becoming increasingly powerless and are forced into inactivity and social exclusion.

There is currently no cure. The victim and their relatives are left to seek relief and strategies for enduring themselves. In the very best case, a slow recovery can take place over a long period of time. ME patients and their relatives often end up in difficult situations where all the time is spent fighting for support and care.

At the same time, the profession and politics are in a start-up where knowledge and experience are being built up to develop medical care and care.

What does the problem look like today and what is being done to meet the needs of affected people? How can we create better conditions for them to have a decent life?

During a 1.5-hour conversation, invited guests can give their pictures of the current situation and together reflect on what is being done and what improvements are required in the future.

Participating in the conversation are:
* Anders Kjellgren, operations manager for pain and rehabilitation center in Linköping
* Hilda Karlsson, sister of ME patient Holger Klintenberg
* Sascha Gidlöf, occupational therapist
* Jimmy Ekström, Regional Councilor for the Liberals in the Jönköping County region

Questions can be sent in advance to regional councilor Jimmy Ekström, who leads the conversation. You can also ask questions in the chat during the seminar.

Feel free to register by sending an email to Jimmy.ekstrom@liberalerna.se

Link to the seminar: https://us02web.zoom.us/j/85786483519

"Tell it like it is" is the Liberals in the Jönköping County region's new seminar series. In a number of seminars, we invite people to talks about current and important topics where they can tell based on their unique experience and knowledge.
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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.

 
mango said:
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.
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There has been a change, Anders Kjellgren from Linköping will not be attending. :)

The Liberals have posted an update on Facebook:
Google Translate said:
The Liberals in Jönköping County
Before tomorrow's seminar, a clarification / correction must be made.

After further dialogue with representatives at the pain and rehabilitation center in Linköping, it is clear that they see themselves as a referral body for ME in the southeastern healthcare region, but on the other hand they should not be perceived as a special knowledge center for the region, according to them.

In addition, it is clear that the service has from time to time been questioned and criticized in its view of how ME care should be conducted (eg by RME).

Since the idea of tomorrow's seminar was to let patient stories and patient/relative perspectives be in focus, representatives of the pain and rehabilitation center choose to refrain from participating.

As an organizer, we agree that the discussion within the profession about how ME care should be designed is best conducted at another time and possibly in a different conversation format than video meeting.
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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
 
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mango said:
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.

[...] I also noticed that there is no representative from the patient organisation on the panel.
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Update posted yesterday by Liberalerna:
Google Translate said:
The idea of tomorrow's seminar is that the conversation should primarily focus on patient perspectives and patient stories. Therefore, we make a change in our discussion panel and have invited Kerstin Heiling, president of RME (the national organisation for ME patients). At the same time, Anders Kjellgren, operations manager for the pain and rehabilitation center in Linköping, is no longer a guest.

We have made the change in consultation with both Anders and Kerstin. There is an ongoing discussion about the activities that are currently conducted at the pain and rehabilitation center in Linköping regarding ME. Something that several of you who are interested in our ME conversation pointed out.

The pain and rehabilitation center differs from several other specialist clinics in the country in terms of how to design the medical care interventions that are aimed at people living with an ME diagnosis, something that, among other things, RME directs criticism at.

The patient perspective needs to be given fair conditions and Anders Kjellgren it as an appropriate balance to refrain from tomorrow's conversations. In this way, in another conversation, or another forum, we can instead allow a discussion within the healthcare profession to take place.
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Kalliope said:
The Norwegian ME Association organises an annual campaign each November to increase knowledge about ME. This year's theme is "Children and adolescents with ME" and the campaign has been moved online with among other several webinars.

Most of the webinars will be in Norwegian.
  • One is about carers/family of children with ME by Mette Schøyen, contact person for children and adolescents in the Norwegian ME Association (17. Nov at 14.00)
  • One is about children with ME and social life by paediatric neurologist Kristian Sommerfelt (8. Nov. at 19.00)
  • Two webinars are about school by nurse Elin Myklebust and specialist in psychology Ketil Jakobsen (10. and 12. Nov. at 14.00)


  • The last webinar is in English and will be held by professor Peter Rowe. The webinar is titled: Management of paediatric ME/CFS: insights from the Johns Hopkins clinic (24. Nov at 14.00)

More information and free registration here (in Norwegian)
https://www.me-foreningen.no/ressurser/kunnskapskampanjer/kunnskapskampanjen-2020/

All webinars will be uploaded later and available for everyone.
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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.

 
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
Google Translate said:
Inflammation, chronic fatigue and pain - updating the state of knowledge

Main message

Chronic fatigue and pain (ME/CFS and fibromyalgia) affect a few percent of the adult population.

Despite the current SBU report, the state of knowledge among doctors is very deficient.

The degree of inflammation explains the fatigue in both conditions.

PEM (post-exertional malaise) is typical of both conditions.

In-depth knowledge of PEM is reported.

The state of knowledge is updated with a focus on inflammation.

Inflammation and PEM distinguish ME/CFS and fibromyalgia from stress related burnout syndrome.
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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". :banghead:
 
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mango said:
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". :banghead:
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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.image.jpeg
 
mango said:
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". :banghead:
Click to expand...

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 :cry:

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.
Google Translate said:
Socal services is going to place Sara [xxx] in a family home to see if she really is sick ..... That she really has ME/cfs .... We had to "choose" between forced placement or voluntary .... On the first alternative they just come and pick her up and it is more difficult to get her home and that neither Sara nor I have anything to say about .... In alternative 2 "voluntary "so she can visit before we both have more to say about ... And it's easier for Sara to get home.

This is how Sweden 2020 treats a severely neurologically ill girl who becomes of age in 2.5 years ........ She has ME/cfs a neurological disease that you can not yet take a blood sample to prove ...

As if Sara would sit in a wheelchair, be dependent on a walker .... Have pains that are not human, dizziness, nausea ... Yes the list is long ... Would she do this because it is fun ?? .. Or because I told her to ... ????? This is a smart shy teenager who longs to study, work on farms with animals .... She does not want to lie in a dark quiet room .....

Sara is unfortunately not alone in her situation ... Several similar cases both in Sweden and the world ... Often it is ignorant doctors who have reported just as for Sara. But I do not understand how they can ignore the specialist ... To have blinders on ...
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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
Google Translate said:
New research on hypermobility, ME and craniocervical obstructions, with Bo C Bertilson and Björn Bragée

In September, a new Swedish study was presented with exciting results on the connection between hypermobility, ME and narrowing of the cervical spine. What was the study's conclusion? What does this mean?

Researchers at Bragee Clinics/Karolinska Institutet have found a markedly increased incidence of both hypermobility and various narrowings in the transition between brain and cervical spine in patients with severe ME/CFS (also called chronic fatigue syndrome). They will report their findings and MD Bo Bertilson, well-known champion of better clinical examinations and pain doctor Björn Bragée discusses in an easy-to-understand way the consequences of such previously unknown findings.

MD Björn Bragée is a specialist in pain medicine, anesthesia and intensive care and founder of Bragée clinics. He is also known from TV's The Angrry Doctor.

Bo C Bertilson is Leg. doctor, MD, research leader and continuing education leader. He is also behind the complaints drawings we previously shared to facilitate diagnosis in clinical examinations.

All our webinars in November/December 2020 are free for everyone and you do not need to be a member to participate ❤ This is because we want everyone who needs it to have access to knowledge and information about HSD, EDS, symptomatic hypermobility and the comorbidities which often go hand in hand with these diagnoses ❤

You must register/register that you want to participate so that you get a link to connect to the webinar with (this is sent to the email address you enter when registering).

We have a limited number of places, so feel free to register well in advance.

Link for registration:
https://us02web.zoom.us/webinar/register/WN_xGWQVBUxSwWmis_FjenmyA
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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.
 
Jonathan Edwards said:
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.
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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?
 
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