News from Scandinavia

[voner]

It is basically a matter of finding evidence of abnormal antibodies that can reasonably be linked to the arthritis. For rheumatoid factor or anti-citrulline antibodies, which are highly specific for inflammatory arthritis the situation is very straightforward. If these are not present further routine tests like immunoglobulin levels may show that antibody production is disturbed and a judgment can be made as to whether this is likely to be relevant.

For cases with no evidence of antibody changes the justification for treatment has to rely on a perception of urgent need and a weighing up of probabilities. usually other options are moe sensible.

The arthritis needs to be severe enough to warrant major treatment but that is not particularly complicated. There does nee to be a lengthy discussion with the patient about benefits and risks and what you hope to achieve and expect to happen without treatment.

What was the led to you trying Rituximab?

 

[Jonathan Edwards]

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.

 

[Kalliope]

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.

 

[rvallee]

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.

 

[Kalliope]

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

 

[Andy]

 

[Kalliope]

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.

 

[mango]

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/

 

[mango]

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

Today, the trial in Ångermanland district court begins against the 62-year-old man from Nordingrå who helped his severely ill wife take a deadly dose of morphine. The man is charged with manslaughter but claims that the injection was done by consensus and according to the woman's own wishes.

The incident occurred at the beginning of March this year. The 62-year-old's wife was severely ill in ME, previously referred to as chronic fatigue syndrome and, according to the police investigation, the couple had planned the woman's death for a long time. The 62-year-old had rigged a gas tube with nitrogen into a mask and constructed a lever that allowed the woman to release the gas herself.

Together with the couple's son and the woman's brother who was present at the residence, the 62-year-old had said goodbye to his wife. But the equipment didn't work. To complete what was meant to be a suicide, the man told during the interrogation that at the request of his wife, he crushed tablets containing morphine and oxycodone and created a solution which he then filled in a syringe for horses.
After 90 seconds, the woman was dead

It turned out that the woman was too weak to inject the substance herself and was helped by her husband to inject the morphine solution. After about 90 seconds, the woman was dead and the man contacted SOS alarm.

On site, the police found, among other things, the setup with the nitrogen gas tube, the syringe and two farewell letters written on the machine, but the letters are not signed. There is also a video showing the first suicide attempt but not when the woman is given the lethal injection.

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

Harrowing video documentation

In connection with the prosecutor's case in the morning, the films were shown with the woman's farewell speech and the first failed attempt to end her life with gas.

- The situation is unsustainable for me and my husband who can take responsibility, says the woman in her farewell speech.

She also describes her illness.

- Living with ME is like living in a torture chamber, there is no cure to get.

The speech ends with her saying: "This is my decision".

[...]It is also clear that on her own initiative she started treatment against ME in Oslo. This is a treatment that cannot be obtained in Sweden. According to the woman, the treatment gives effect, but it costs hundreds of thousands of SEK a year.

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

The accused man's defense attorney Thomas Bodström believes that his client should be completely acquitted of criminal suspicion. In the situation they were in, it was not criminal but [desperate need], he reasoned.

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

 

[mango]

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.

We actually need your help to live in the first place. Help us live the best life we can despite our difficult illness. And only when you have given us everything we need but we are still suffering, can we discuss whether euthanasia should exist or not. Otherwise, there is a great risk that euthanasia will only be the ultimate consequence of a society that constantly denies our reality.

A society where we are not worthy of help to live - but only help to die.

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

 

[mango]

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

The other day, I wrote about active euthanasia as a result of the ongoing trial against a man in Nordingrå who was charged with manslaughter after helping his ME-ill wife die. The husband claims that his wife has not received adequate care and support. If she had received it, the circumstances might have been completely different, and the couple had not been in the situation that triggered the tragic event when the wife died.

Euthanasia should not be a substitute for adequate care. It should not be something a sick or disabled person is even considering because of a lack of safety nets in society.

People are different. Most people have a strong survival instinct and see each day as valuable even in severe illness. But there are those who, despite social support and good care, still feel satisfied with the life they have lived and want to end when they decide for themselves. This is the recent discussion about active euthanasia. Not about those who want to live.

Researcher Niklas Altermark has in-depth interviewed ME sufferers whose social insurance payments have been cancelled, and found that because of this they have become more ill. Strikingly many of them also have suicidal thoughts. Not because of the disease itself, but because of how they are treated by the Swedish Social Insurance Agency, with suspicion, denied sickness benefits, and because of that disintegrated economy. There are also examples of ME sufferers who have applied to suicide clinics abroad.

 

[mango]

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

In order to reduce the cost of patient transports, there is a proposal to cancel the [free buses to the hospital] in the region. Instead, more patients should use public transport and a vision of the future could be to get to the stops by garbage truck, ice cream truck or the postmen's cars.

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

Sadly, this is not a joke...

 

[Kalliope]

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.

 

[rvallee]

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.

 

[mango]

SVT: Sjukdomen ME i fokus - nu startas ny specialistmottagning

Promising news from Sweden about an ME-clinic being underway in the region Västernorrland.

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

#MEvårdsaknas is a new Swedish advocacy campaign demanding (better) medical care for people with ME. The igniting spark was the recent news that the plans to open a specialist clinic in the north of Sweden have been scrapped "because of the financial situation" (or, in other words, the politicians and bureaucrats chose to prioritise other things).

https://mevardsaknas.wordpress.com/

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?

Let's just hope it will be run by people willing to familiarise themselves with current research and the situation for the patients.

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.

 

[mango]

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

Yes, a discussion about euthanasia is important - but we think that when it comes to illnesses like ME, we can't really start the conversation at that end.

In the stories ME sufferers shared about their care situation in the context of the ME protest action, it becomes very clear that many people have become more ill because of wrong care; wrong, delayed or missing diagnosis and lack of support from the community. We can read about people who get the wrong diagnosis with subsequent wrong treatment.

There are stories of doctors removing and replacing a diagnosis made by ME specialists, doctors who refuse to prescribe medication prescribed at ME special centers, and who refuse to write a doctor's notes [for sickness leave, sickness payments] and make home visits.

People describe how they are denied ambulance transport, denied necessary referrals and refused care for other diagnoses because they have the diagnosis of ME. How they are mocked. Getting laughed at. Are told that the disease they have does not exist. Completely left out to themselves and their relatives. More sick than they needed to be.

Again, ME is a disease that is made worse by excessive strain. So it is about physical, cognitive and emotional effort at a much lower level than what is stressful for a healthy person. This is inevitably something ME sufferers spend a large part of their daily lives trying to manage. And not getting care, or getting wrong care, being denied adaptation, home visits, symptom relief, aids, home care, assistance, travel service, reimbursement from health insurance or being disrespectfully treated, actually risks worsening basic illness. Not only temporarily but permanently! In addition, society's handling of the situation of ME-diseases risks providing a secondary mental illness in addition.

Many of the most severely ill have been impaired by precisely the efforts that were intended to help. Discussing euthanasia for people with ME, but at the same time ignoring how ME sufferers are treated by our society and the severe consequences it has for the development of the disease is both unreasonable and dishonest. It's like saying, "You are not worthy of care, not worthy of support, not worthy of respect. Not worth getting your needs met ”. But then claim that they should have the right to choose death when they no longer endure the consequences of how they have been treated.

Healthcare and other communities must take responsibility and treat people with ME in a way that does not aggravate the disease.

In fact, ME sufferers need your help to live in the first place. Otherwise, there is a great risk that euthanasia will only be the ultimate consequence of a society that constantly denies their reality.

Debate: Discussing euthanasia for ME sufferers, but at the same time ignoring how they are treated and what serious consequences it has for the development of the disease is unreasonable and dishonest, writes Malin Carlbom, Karin Alvteen and others.

 

[mango]

The typical symptoms are fatigue and fatigue

"tiredness and exhaustion" would be a more literal translation

 

[mango]

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.

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/

Why did SVT Västernorrland announce that a new ME center would open in Region Västerbotten with Region Västernorrland as co-financier? And what information is there that makes them take it back? Can it really be so bad that accurate information, the fact that the plans to open a specialist center in the Västerbotten region has been cancelled, has not yet reached the relevant agencies? Not even the co-financing government bodies?

Regardless, it is unfortunate that the media disseminates information that is not correct. That they contribute to giving false hope to severly ill people dealing with a catastrophic medical care situation. Obscurity creates worry and uncertainty, and that is the last thing people with ME need!

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:

Therefore, we would like SVT Västernorrland to issue a correction about the false information, making it clear whether the new updated information comes from credible sources within the Region Västerbotten. Simply updating the information in the article in a secretive fashion is not enough. This is all too important for that.

 

[mango]

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

- I am good friends with both husband and wife. I have all the sympathy with the family. I probably have the same attitude as them, that it is very difficult to see this as a crime, says Gertie Gladnikoff.

[...] She says that she knows that euthanasia is not legal in Sweden, but believes that in the Nordingrå case it should not be seen as euthanasia as her husband was an extended arm for the woman to complete suicide.
- The woman had constant terrible torments. I don't think we can sit here and demand that people in such a situation continue to suffer. But - the decision must always be the person's own and never through any pressure or such.

[...] It feels difficult to see any sense in putting him in prison.

(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...)

 

[Kalliope]

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...

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