News from Scandinavia

What was the led to you trying Rituximab?

 

I worked out that RA was a regulatory disorder of B cell signalling not T cell signalling. We published the full hypothesis nine months before starting the trial. The analysis was very detailed with evidence supporting 55 steps in the process. It had taken me eighteen years to get to that point.

 

Good letter to the editor in a Norwegian medical newspaper by specialist in psychology Grete Lilledalen. She's also a family member to an ME patient. She criticises the biopsychosocial approach model for ME and urges the government to reinstate the earmarked allocation in the national budget for the ME research by Fluge/Mella and their team.

Grete Lilledalen: Statsbudsjettet, forskningen - og forståelsesmodellen for ME
google translation: The national budget, research and the approach model for ME

A biopsychosocial model of understanding for ME seems to legitimize the absence of focus on somatic aberrations, maintaining unconfirmed stigma about the patient group and standing in the way of a medical offering for ME sufferers. 40 years of focus on psychosocial factors has neither given us effective treatment nor reduced prevalence. Now it's time to focus on the bio part.

 

Weird how people with a personal understanding of ME consistently reject the BPS model for having nothing to do with reality. And how the BPS folks tend to rant against those personal experiences as a conflict of interest because reasons. So much so that the author actually listed that as a possible CoI. Damn. Talk about having wrecked an entire area of medicine so thoroughly that simply knowing someone with the disease leads to some dismissing the entire viewpoint as a conflict.

Really weird. Wait, no, the exact opposite of that. Literally predictable. I very much appreciate the input, it's a great commentary. References the recent paper by Vink on recovery, excellent. We sadly know all too well it takes courage to tell the truth when lies are in complete control.

 

The Norwegian ME Association - Rogaland County - has made a short seminar about ME and how to adapt teaching of children and adolescents suffering from ME. The seminar contains a lecture that lasts approximately one hour. It gives an introduction to ME, cognitive challenges, rules and laws, how to develop an education plan and the ME patient and the relationship to teachers and classmates.

The seminar is free and for everyone who meet young ME patients through their job. The seminar is available several places in Norway and during 2019 there will have been 6-700 who have participated at the seminar.

Tonight they have shared the news that Prime Minister Erna Solberg has invited them for a meeting in February 2020 about the seminar. Let's hope this will be a good chance to put young ME sufferers on the agenda!

MEogskole: Invitasjon fra statsministeren
google translation: Invitation from the Prime Minister

 

https://twitter.com/user/status/1190979222313066497

 

The Norwegian ME Association is launching their annual campaign for knowledge today. This year's main theme is PEM.
Among other things they've prepared a brochure about PEM and a video interview with paediatrician and neurologist Kristian Sommerfelt where he describes PEM.

The knowledge campaign will go on for a few weeks with more information material to come. Hopefully there will be some activity in the media as well.

https://www.youtube.com/watch?v=S9bdcWBG0Yw

 

Yes, unfortunately Skandia is currently sponsoring psychosocial research This study, for example: https://www.s4me.info/threads/sweden-act-for-me-cfs-an-open-case-trial.4684/

 

TRIGGER WARNING: suicide, death.

There are several news articles about the trial that started today, a man charged with manslaughter for helping his severely ill wife end her life in March 2019. Most of the news articles are behind paywalls, but here are some open ones (in Swedish):

https://www.svt.se/nyheter/lokalt/v...attegangen-om-bamhartighetsdrapet-i-nordingra

https://www.svt.se/nyheter/lokalt/vasternorrland/aklagaren-yrkar-pa-drap

https://www.svt.se/nyheter/lokalt/vasternorrland/thomas-bodstrom-min-klient-har-lidit-tillrackligt

https://www.svt.se/nyheter/lokalt/v...-ar-olagligt-i-sverige-att-berova-nagon-livet

ETA: https://www.aftonbladet.se/nyheter/a/dOarQO/richard-63-gav-sin-svart-sjuka-fru-en-dodlig-injektion

 

More great content from #MEvardsaknas https://mevardsaknas.wordpress.com/

The above mentioned trial has sparked a public debate about assisted dying (in general, not just in relation to ME).

In this important blog article #MEvardsaknas argues that the devastating lack of care and social support pwME are experiencing is a crucial aspect of the problem, and suggests that's where the discussion needs to start.

https://mevardsaknas.wordpress.com/2019/11/06/ratten-till-liv-forst/



https://twitter.com/user/status/1192002705620951040

 

More from the debate about assisted dying. This is from an editorial written by Swedish journalist Sofia Mirjamsdotter.

Ingen ska behöva längta efter döden för att samhället sviker ["No one should have to long for death because society is letting them down"]
https://www.allehanda.se/artikel/so...a-langta-efter-doden-for-att-samhallet-sviker

https://twitter.com/user/status/1192341118135996416

 

In other news in Sweden today, not strictly ME related but still relevant:

P4 Väst: Sjukresor med sop- och glassbilar upprör
https://sverigesradio.se/sida/artikel.aspx?programid=125&artikel=7337895

Sadly, this is not a joke...

 

SVT: Sjukdomen ME i fokus - nu startas ny specialistmottagning

Promising news from Sweden about an ME-clinic being underway in the region Västernorrland. At the time being there is not help for ME patients in the region.
Let's just hope it will be run by people willing to familiarise themselves with current research and the situation for the patients.

For some reason I couldn't google translate the article.

 

I gotchu, bizarre formatting but whatever the substance is pretty good.

There really needs to be more research into the lived reality of ME patients, the consequences of abysmal quality of life and the high suicide rates that follow. Those are almost all the result of negligence and malpractice. It's sad that it takes such a tragic event to have a discussion over this but because of public health choices that keep suicides out of news reports so many deaths are being ignored.


The disease ME in focus - region Västernorrland seeks coordination

The care of patients with the disease ME needs to be reviewed, Region Västernorrland believes. Those affected suffer severely, and there is a great need for research and consensus on response and efforts, says county operations manager Karin Dunberg Smeds.

The care for ME sufferers has been noticed in connection with the trial of the woman in the Nordingra district who received a fatal injection of her husband. There has been criticism of how patients with ME are treated. In connection with the trial, relatives have said that the woman could not receive any care in Västernorrland .

The region is self-critical - there is no consensus
In Västernorrland, Karin Dunberg Smeds is acting county administrative head for geriatrics, neurology and rehabilitation, and she sees reason to be self-critical.

- This is a patient group that is suffering from an incredible amount of suffering. We lack research and consensus on how to handle this patient group. We also need to be better at responding to the patent group and coordinating our efforts, unfortunately it is a patient group that has not always been listened to and believed. Together we need to find ways to deal with the people affected, she tells SVT.

"Difficult diagnosis to make"
The typical symptoms are fatigue and fatigue, almost like flu-like symptoms. Many times with joint and muscle pain as well as sleep disorders. The symptoms are greatly exacerbated by physical or mental exertion. It is not a deadly disease in itself but it causes great suffering.

- Our neurologists are very capable of making diagnoses all around, but a clear ME diagnosis is very difficult to make. You work to exclude other diseases, and so you have a possible question around ME, says Dunberg Smeds.

Plans for specialist reception for ME
She believes that there are ambiguities about the patient group that need to be sorted out. Region Västerbotten has plans to build a specialist reception - something she welcomes - but the plans are currently paused for financial reasons.

ME was discussed at a meeting as recently as yesterday in the Västernorrland region.

- We have some patients with this issue in our region and we need to think about how we will proceed.

The article has been changed, as some parts were based on information that was not updated.

 

I'm sorry, but I have strong doubts about this. It's the same project that I wrote about earlier in this thread:

The local patient organisation let its members know 21 September 2019 that they had received news from the Region Västerbotten management (Regionledningen i Västerbotten), saying that they are unable to go through with the plan to open a ME Center, citing a lack of money. We also know from private communications elsewhere that there are still politicians fightning to keep the plan alive.

So, the statement quoted in the article @Kalliope posted is a bit confusing... Is it really true that the plans are back on? If so, when was this decision made and by whom?

I hope so too We don't know for sure if the centre would have a wholly biomedical approach or not. The report from August 2018 talks about symptom management, multimodal teams, rehabilitation, self-help, focus on activity ability and improved quality of life, and activity management, but it's a bit too vaguely written to tell for certain if they mean true pacing to avoid PEM or something else. Diagnostic criteria would be the Canadian Consensus Criteria "2003 and 2011".

Personally, I believe a lot of the details would depend on what clinic the ME centre would be hosted by. They don't recommend anything specific in the report, but mention a few potential options: neuro rehab, pain rehab, stress rehab at the behavioural center, or a couple of healthcare centers.

(If history is any indication, I think we can all agree that pain and stress rehab clinics are not the best options... For example The ME/CFS Project at Danderyd which ended in 2013, or Bragée ME Center who claims to have a strictly biomedical approach, but is based at a pain clinic with a neurosomatic approach, and who according to documents from the Ethical Review Authority are now running an ACT for ME/CFS study aimed at getting participants to gradually increase their activity levels, address avoidance behaviours etc...)

Personally, I felt cautiously optimistic when reading the report, especially seeing that they seem to be aware of the fact that over-exertion leads to a worsening of symptoms, very few pwME recover, and they even talk about an ambulant team, home visits or internet based "visits" for the severely ill, as well as to coordinate with teams offering homebased medical care etc.

For those interested in the details, here's the report (in Swedish) from August 2018.

ETA: Please note that Västernorrland and Västerbotten are two separate counties that cover a huge geographical area. Very long distances, making it impossible for many pwME to travel.

ETA: I just noticed that the SVT article has been updated/corrected to say that the plans to open a ME centre have been put on hold indefinitely.

 

Great opinion piece published in Dagens Samhälle, by the people behind #MEvårdsaknas Signed by among others Karin Alvtegen, pwME and famous/beloved author.

(It's a slightly modified version of the blog article linked above.)

Rätten till liv först! [Right to life, first!]
https://www.dagenssamhalle.se/debatt/ratten-till-liv-forst-30077

https://twitter.com/user/status/1192872412460802048

 

"tiredness and exhaustion" would be a more literal translation

 

Blog article by #MEvårdsaknas, commenting on the false information that was published recently.

Sant eller falskt - glädjebesked eller fake news? [True or false - wonderful announcement or fake news?]
https://mevardsaknas.wordpress.com/2019/11/10/sant-eller-falskt-gladjebesked-eller-fake-news/

Mistakes like these really do matter. If the info had been true, it could have been potentially life-changing news for lots and lots of people. So many overjoyed pwME commented on the original article when it first was shared in Facebook groups etc, crying tears of relief and gratitude, expressing excitement and a renewed sense of hope etc. And then the article was corrected,... and it was heartbreaking...

News travel fast too. For example, ME Association Denmark posted a link to the original article on their Facebook page, commenting [auto-translated] "In Sweden one ME-specialist center opens after another. Denmark has none, and ME patients are without care options for many years now." Who will tell all their followers that the news was false? (And what else have they been reading that has made them mistakely believe there are many new ME centers in Sweden..?)

I agree with #MEvårdsaknas's request:

https://twitter.com/user/status/1193571997952950275

 

TRIGGER WARNING: Suicide, death.

Another article with comments on the ongoing trial (a man in Sweden charged with manslaughter for helping his severely ill wife end her own life).

The former chairperson of the local chapter of the patient organisation RME is sharing her personal views on assisted dying and this case in particular.

Gertie Gladnikoff har själv ME – följer dråprättegången
https://etidning.allehanda.se/369/T...ladnikoff-har-sjalv-ME-foljer-draprattegangen

(RME has very strict rules about active members publicly expressing personal opinions on certain topics, so I'm very surprised to see her being this outspoken... I can't help wondering whether RME has "signed off" on this or not...)

 

This is just so utterly weird. Thanks for keeping us updated, @mango I wonder how this will develop further..