News from Scandinavia

This was a very welcome rarity from Denmark.
Fanø municipality offers their apologies to a family with a severe ME sufferer for not receiving the help they needed.

Ugeavisen: Sejr for syg datter i ME-sagen efter fire år: Fanø Kommune erkender fejl og siger undskyld
google translation: Victory for sick daughter in ME case after four years: Fanø Municipality admits mistakes and says sorry


The admission and apology is very clear in a letter that Fanø's mayor Sofie Valbjørn and the now resigned municipal director Vibeke Kinch have sent to Vibeke and Esben Ilsøe Gustavussen after a meeting between the parents and the two municipal top people. The letter, in which the mayor and municipal director thank you for a good meeting, states, among other things:

- You have been through an incredibly difficult period in your life. Not only do you have a very ill daughter who you have to take care of, you from Fanø Municipality have not been met with the understanding you could rightly expect. You have experienced your suspicions and not listened. In the letter, the mayor and municipal director also write:

- When we look back at the process today, we can see that Fanø Municipality, instead of focusing on Marie Louise's functional level and thus her and your need for help, has focused too much on uncertainties around the case. And unfortunately also on whether you were telling the truth or not. The apology in the letter is as clear as the acknowledgment of errors and omissions in the proceedings:

- We would like, as the top management in Fanø Municipality, to take responsibility and give you our unreserved apology for the case processing you have been subjected to, the letter reads, before the mayor and municipal director end with a hope of jointly with the parents to create a trusting and good collaboration for the benefit of their seriously ill daughter.


 
mango said:
Today, the Court of Appeal hearing begins about the high-profile case of Richard Lundgren who helped his seriously ill wife to die. The district court sentenced him to 1.5 years in prison for manslaughter, but the verdict was appealed by both sides. Now the defense lawyer Tomas Bodström wants this not to be seen as a criminal act and that his client should be acquitted completely.

https://etidning.allehanda.se/369/Tidningen-Angermanland/329723/2020-09-14/r/4

https://www.tv4play.se/program/nyheterna/13291147

https://www.tv4play.se/program/nyhetsmorgon/13291199
Click to expand...
The appeals court has shortened the sentence to 12 months. The defense lawyer intends to appeal again, arguing that his client should be acquitted.

More info in the following news articles:

https://www.expressen.se/nyheter/krim/han-gav-sin-sjuka-fru-dodsspruta-vill-frias/

https://www.aftonbladet.se/nyheter/a/Ga1pwB/sankt-straff-for-drap-pa-me-sjuk-fru--overklagar-till-hd
 
An opinion piece written by the counsellor at Bragée ME-center.

Aftonbladet: ME-sjuka tvingas leva helt utanför samhället
Nu måste Försäkringskassan bli mer human
https://www.aftonbladet.se/debatt/a/aP2mVd/me-sjuka-tvingas-leva-helt-utanfor-samhallet

Google Translate, English ("ME patients are forced to live completely outside society")

Google Translate said:
The government has recently commissioned the Swedish Social Insurance Agency to remedy the shortcomings in health insurance.

It is a welcome initiative, not least for those suffering from ME/CFS - a disease that has received much attention in the past year due to several cases of suicide and assisted suicide.

As a treating counselor for these patients, I see that some of the reasons for these tragic life stories are the despair of being forced to live with a serious illness that is not accepted as a "real" diagnosis by either the Swedish Social Insurance Agency or certain healthcare regions.

The symptoms of ME/CFS (Myalgic Encephalomyelitis) are mainly severe energy deficiency, pain and flu-like symptoms.

Only those who have experienced this themselves can understand. Lifting the hand and combing your hair can take all the energy of the day. If you make too big effort, the system crashes, which can mean lying in a dark room a very long time without the energy to even spend time with your own family.

Some become paralyzed in parts of the body or lose their ability to speak, until the energy returns.

ME can affect anyone [...]
Click to expand...
ETA:
Google Translate said:
I am often asked how I manage to work with these seriously ill patients. I always answer the same thing: It is not the patients who are the burden. What weighs on me is the unequal, exclusive and non-functioning Swedish insurance and healthcare system.
Click to expand...
ETA:
 
Last edited:
Sten Helmfrid has published an article on why ME/CFS is a distinct clinical entity, separate from unexplained chronic fatigue. The abstract is in English, but the text is in Swedish.

https://www.researchgate.net/publication/344465562_Vad_ar_MECFS_och_varfor_ar_det_en_klinisk_entitet
Abstract said:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a severely debilitating illness.

It has occasionally been questioned in Swedish media, even though it is recognized as a distinct clinical entity since 1969. This article discusses what ME/CFS really is and refutes common misconceptions.

ME/CFS was first observed as a sequel to certain infections. The cardinal symptom is post-exertional malaise. Other important symptoms are fatigue that is not relieved by rest, neurocognitive problems, sleep reversals, and autonomic symptoms.

ME/CFS is classified as a neurological illness, as many of the core symptoms are associated with the nervous system.

Several expert reports have concluded that ME/CFS is a distinct clinical entity. The conclusions are based on clinical observations, statistical analyses, and the results of some studies that have demonstrated objectively measurable abnormalities in patients after exercise.

ME/CFS differs from unexplained chronic fatigue by how it is triggered, the illness trajectory and the defining symptoms apart from fatigue. Moreover, the fatigue in ME/CFS is more severe and more disabling than, for example, fatigue in psychiatric diagnoses.

In a subject as complex as ME/CFS, the media should highlight the conclusions from expert reports rather than echoing the views of individuals who have no qualifications in the field. [Text in Swedish]
Click to expand...
Alternative download link:
https://www.dropbox.com/s/qurr5i8jnend5g7/ME-CFS är en klinisk entitet R1.pdf?dl=0









Here's a thread about the book he refers to in his tweet:
https://www.s4me.info/threads/trött-hela-livet-sjukdomen-me-jörgen-malmquists-book-on-me-cfs.16517/
 
Great read. A proper translation to English would be handy.

Nice summary of historical facts, and what a contrast to Reimer and Malmquists ideology-driven and rant-like approach. It is a shame that the ones with no merits on ME, but so in need of attention, often gets that attention.

Many patients are familiar with the content of the paper, but always good to see it tied together like this. I especially liked the “Case definition”-part, the challenges when diagnosis is based on symptoms, and the highly relevant analogy to Covid-19, the early outbreak in Wuhan and doctor Li Wenliangs approach (before the genetic code was known).

So this is just another opportunity to stress how exceptionally bad and inappropriate the Oxford-criteria are for diagnosing anything at all.
 
Kalliope said:
This was a very welcome rarity from Denmark.
Fanø municipality offers their apologies to a family with a severe ME sufferer for not receiving the help they needed.

Ugeavisen: Sejr for syg datter i ME-sagen efter fire år: Fanø Kommune erkender fejl og siger undskyld
google translation: Victory for sick daughter in ME case after four years: Fanø Municipality admits mistakes and says sorry


The admission and apology is very clear in a letter that Fanø's mayor Sofie Valbjørn and the now resigned municipal director Vibeke Kinch have sent to Vibeke and Esben Ilsøe Gustavussen after a meeting between the parents and the two municipal top people. The letter, in which the mayor and municipal director thank you for a good meeting, states, among other things:

- You have been through an incredibly difficult period in your life. Not only do you have a very ill daughter who you have to take care of, you from Fanø Municipality have not been met with the understanding you could rightly expect. You have experienced your suspicions and not listened. In the letter, the mayor and municipal director also write:

- When we look back at the process today, we can see that Fanø Municipality, instead of focusing on Marie Louise's functional level and thus her and your need for help, has focused too much on uncertainties around the case. And unfortunately also on whether you were telling the truth or not. The apology in the letter is as clear as the acknowledgment of errors and omissions in the proceedings:

- We would like, as the top management in Fanø Municipality, to take responsibility and give you our unreserved apology for the case processing you have been subjected to, the letter reads, before the mayor and municipal director end with a hope of jointly with the parents to create a trusting and good collaboration for the benefit of their seriously ill daughter.
Click to expand...
One of the biggest newspapers in Denmark, Politiken, has picked up this story and is featuring it today with three articles.
All behind paywall, but here's a hastily translation of the headlines

- They were accused of incest and abuse of their daughter Marie Louise, who for four years in a row has been lying in a dark room. Now they're receiving an apology
Article here

- For third year in a row Marie Louise is lying in a dark room
Article here

- Norwegian professor has met many like Danish Marie Louise: "It was a shock. Some are so ill they're almost in a coma"
Article here (interview with prof. Saugstad).
 
Last edited:
A bed bound/severely ill pwME in Sweden was admitted to hospital. The home care service kept visiting her house several times over a number of days, but they didn't notice that she wasn't there. They didn't check the bedroom even though the door was wide open, not even to say 'hello' or 'goodbye'. They didn't even notice that there were no dishes to wash or rubbish to take out. They just left.

 
mango said:
A bed bound/severely ill pwME in Sweden was admitted to hospital. The home care service kept visiting her house several times over a number of days, but they didn't notice that she wasn't there. They didn't check the bedroom even though the door was wide open, not even to say 'hello' or 'goodbye'. They didn't even notice that there were no dishes to wash or rubbish to take out. They just left.

Click to expand...

Really frightening.
 
Kalliope said:
One of the biggest newspapers in Denmark, Politiken, has picked up this story and is featuring it today with three articles.
All behind paywall, but here's a hastily translation of the headlines

- They were accused of incest and abuse of their daughter Marie Louise, who for four years in a row has been lying in a dark room. Now they're receiving an apology
Article here

- For third year in a row Marie Louise is lying in a dark room
Article here

- Norwegian professor has met many like Danish Marie Louise: "It was a shock. Some are so ill they're almost in a coma"
Article here (interview with prof. Saugstad).
Click to expand...
The last two articles were first published in March 2019.

The first one is new and I didn't get a paywall. Excellent article, sensitively written. It says the earlier feature from March 19 was one of the most read stories of 2019. Go give them some traffic on this one, too, keeps the editors interested (Politiken is widely read so continued coverage there would be good). Those who don't read Danish will have to do a bit of copy & paste into google translate, it's too long for a simple page translate, but it's worth it.

But holy crap what a haunting fucking nightmare - pardon my language, I don't usually swear online, but here it's the only reasonable reaction.

A very strong and brave family to stand up to not just the sustained malpractice by the authorities for all those years but also the vilification by their local community (who believed the authorities - and a certain P Fink). So pleased the family finally has a little light at the end of the tunnel. Less pleased that the bigger picture in Denmark hasn't changed much despite Parliament's decision to reclassify ME from functional disorder to biomedical as per WHO; treatment remains CBT and GET. Argh.
In addition to being left to fend for themselves with a seriously ill and in dire need of care, the Gustavussen family on Fanø has been accused and suspected of neglect, drug abuse, incest and of being mentally ill themselves. It has all been rejected, and now the municipality says: "Sorry". At the same time, the daughter is awarded the help she and the family have badly needed since 2016.
Click to expand...
And here some local doctors completely loose the plot. I find it extraordinary that they feel they must bring in the "big guns" to convince the locals of their point of view irrespective of the interest of the patient or the ensuing fully predictable witch hunt on the parents.
During that period, the parents arranged for two doctors with experience with ME, Ola Saugstad from Norway and Jesper Mehlsen from Copenhagen, to come and give a lecture at Fanø City Hall. The local doctors arranged for a Danish expert in functional disorders to give a presentation for Sundhedshuset on Fanø in the same period - Per Fink, who is the psychiatrist who was responsible for Karina Hansen's treatment, the woman who was forcibly admitted in 2013.

"It is from this meeting that we receive a number of feedbacks that the distrust against us is enormous, and there is loud speculation that the cause of Marie Louise's illness was incest," says Vibeke Ilsøe Gustavussen.
Click to expand...
 
It is insufficient to be "awarded the help she and the family have badly needed since 2016". What about the monetary compensation for the abuse at the hands of doctors and local authorities? They seem unable to sort themselves out. It may take their insurance providers to do the job.
 
Last edited:
[Paywalled] Folkbladet: Löfte: Länet får ME-mottagning – möts av skepsis ("Promise: The county will get a ME center - is met with skepticism")
https://www.folkbladet.nu/2020-10-31/lofte-lanet-far-me-mottagning-mots-av-skepsis

A good biomedical ME center in Västerbotten (a county in the north of Sweden) would be immensely valuable and important, seeing that there are currently no ME centers north of Stockholm, and long-distance travel is simply not an option for many pwME.

The news article linked above is unfortunately paywalled, but here's a Facebook post by ME-vård saknas that tells you the important bits:
Google Translate said:
Politicians in the Västerbotten Region are now making new promises that a specialist clinic for ME will be started up in the region. But there are still no formal decisions from neither the Health and Medical Care Committee, which is meeting this November, nor the Regional Council. The latter will meet in February 2021 and are the ones who will finally decide on the budget.
We were contacted by Västerbottens Folkblad who wanted reactions to the promise. #MEvårdsaknas' initiator Malin Carlbom gave a written comment and we thought we would share it in its entirety with you:

“Two years ago, I was happy and hopeful. Back then, the Health and Medical Care Board had decided that there would finally be a specialist clinic for ME and that money would be set aside for this in the coming budget. A year later, the region put everything on ice and that was when we started protesting and finally submitted the petition with 10,000 signatures from #MEvårdsaknas.

After discussions, the region finally appointed another inquiry, which will now be decided on another year later. In light of this, it really feels impossible for me to express myself about what I feel. Ideally, I would like to ask you to come back when the decision has been made, the center is in place and they have started receiving patients, because only then will I have something to comment on.

It probably sounds both harsh and pessimistic, but we patients cannot put our hope in something we do not know for sure will come true. I have been ill for over ten years and still do not have any functioning care. Although I am mostly bedridden and get sicker by visiting the [primary care] health center, it is not even a given that the health care workers will do home visits. And I'm not alone in this.

Every day without adequate medical care for people ME means that seriously ill people are at risk of being mistreated by the healthcare, that many are harmed by healthcare and that some are completely without healthcare. The situation was urgent already two years ago and it is just as urgent today. We hope there are no more false promises now, because we can not wait any longer! Now it's up to proof for Region Västerbotten! ”

In today's digital edition of Folkbladet there is the following article which is based on our statement, among other things, unfortunately it is a paywalled plus article:
https://www.folkbladet.nu/2020-10-31/lofte-lanet-far-me-mottagning-mots-av-skepsis

Photo: Montage with screenshot from Folkbladet, Västerbotten.

On our website you can read more about Myalgic Encephalomyelitis (ME) and the background to #MEvårdsaknas but also about the tours behind an ME clinic in Västerbotten.
https://mevardsaknas.wordpress.com/

In the invitation convening the next meeting of the Health and Medical Care Board, there is a lot of information to delve into based on the latest investigation:
https://meetingsplus.vll.se/committees/halso-och-sjukvardsnamnden/mote-2020-11-05
Click to expand...
Well done, Malin! She's such a brilliant advocate :thumbsup: Thank you!



ETA: It says in the news article that "the estimated cost for the ME clinic is around 3 500 000 SEK".
 
Last edited:
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.
 
Last month at its national meeting, the Norwegian ME Association unanimously decided upon the following demands:
(google translated)

The national meeting of the Norwegian ME Association therefore requires the following:

  1. A distinction between ME with PEM and other forms of fatigue syndrome at all levels in the
    health care system and other public bodies.

  2. In the discussion and description of the disease ME with PEM, only the term ME is used.

  3. Assessment of ME shall be made in accordance with the Canadian consensus criteria or the more recent
    international consensus criteria.

  4. A new national guide for ME is being prepared based on research on ME that uses these
    criteria and/or that PEM is the cardinal symptom.

  5. A separate national competence service for ME will be established, separate from the current National
    competence service for CFS/ME.
More information at their website here (in Norwegian) - google translation here
 
The Norwegian ME Association is now launching a bi weekly news summary in Norwegian.

In this first news summary they write about
  • the NICE guidelines draft
  • the approval for the Lightning Process study by the Regional Committees for Medical and Health Research Ethics
  • the potential biomarker from the Canadian Collaborative Research Center
  • COVID-19 and ME
  • The Norwegian Labour and Welfare Administration and work assessment allowance
  • News from the Norwegian ME Association
ME-nyheter: Uke 46 og 47
google translation: ME news: Week 46 and 47
 
You must log in or register to reply here.
Back
Top Bottom