News from Scandinavia

Rain said:
@Kalliope do you happen to know what the mentioned pilot project at St Olav is?
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I assume that is the standardised plan of care which has been promised for several years to be developed for ME patients. But they've expanded it to be a plan for fatigue-conditions in general, so I fear it will end up with a biopsychosocial approach and be more suited for other conditions than ME.
 
Kalliope said:
I assume that is the standardised plan of care which has been promised for several years to be developed for ME patients. But they've expanded it to be a plan for fatigue-conditions in general, so I fear it will end up with a biopsychosocial approach and be more suited for other conditions than ME.
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I have no trust in St. Olavs on this, and I wish it was a project at Haukeland instead.

My experiences with St. Olavs hospital as a ME patient has been awful. I got diagnosed there, once as a teen, and then had to be diagnosed again after 18, because apparently you can't keep the diagnosis once you turn 18? (so bizarre).

The first time I was diagnosed was 2010 and the second time was 2015 and nothing improved in those years. I found the experience traumatic. They were so dismissive and had no knowledge or understanding.

After my diagnosis the second time they sent a letter to my GP saying I need GET, despite the fact that I already was working out a lot and was really fit at the time.

When I got diagnosed the first time the doctors told me I would get better because I was young, showed me the staircase illustration of how I would gradually improve, and told me to continue with school and daily swim practice as normal until I was completely recovered. That was the only information I got about my illness from this "expert team". They set me up for going from mild to severe, and my parents to be unknowingly abusive as they thought forcing me to school was what I needed to get better.

The team had no clue about anything, no advice that would help or even be applicable to real life, but still they were pretending to be experts that should tell this misbehaving teenger how to live their life. I found it so annoying. Like I was being punished and disciplined for being ill and not performing as they wanted me to.

For instance they tried to make a really ridgid time schedule for me, with elements like 'every day at 17:00 you have to spend one hour with friends'. Completely out of touch with my life, my health and my wishes, and it felt like they were trying to take away my autonomy.

When I read my medical records from that time I found that they had mostly focused on how sad I had been during the interviews, and how much I had cried when I explained that I often was too weak to open milk cartons, as if the fact that I cry was the most important thing they learned.
 
I had to laugh when I read in the ministers reply:

"You must be met with respect and understanding from the health care service"

Yes, we know that we should be met with respect and understanding, but we aren't. It's like they are admitting that we are abused, saying it should be better, and doing nothing about it.
 
rainy said:
I had to laugh when I read in the ministers reply:

"You must be met with respect and understanding from the health care service"

Yes, we know that we should be met with respect and understanding, but we aren't. It's like they are admitting that we are abused, saying it should be better, and doing nothing about it.
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For me it was the "you are not left to fend for yourself" line. That is a whole different world than the one I'm living in.
 
I am so sorry to read what St. Olavs hospital put you through, @rainy :broken_heart:
I completely understand why you don't trust them to be able to make a proper plan of care for ME patients. I'm worried as well about this.

Once again there's been a rather positive initiative from politicians to help the patient group, but the professionals manage to mess it up by not familiarising themselves with the literature of the field nor listen to the patients.
 
I'm sorry to hear about your experience with the health system @rainy .

It very much sounds like they were fixated on things that interested them and your stay was all about verifying their view and meeting their needs.

This is exactly the problem in ME care to date. Many institutional therapists / clinicians in ME don't see a person. They see their treatment plan. Implementing the program is what motivates them. The idea of constant feedback and assessment from the patient is too much bother / work. They want to feel positive about what they do to you -- feedback would spoil that.

You deserved better. And you have escaped their grasp.
 
First non-opinion piece on the new NICE guidelines, not surprisingly the competence center "don't understand/are wondering why the new guidelines downplay the importance of individualized physical activity".

Storbritannia går bort fra treningsbehandling for ME
The UK is moving away from training treatment for ME (google translate)

Leader of the Norwegian competence center for ME said:
- The new guidelines undercommunicate the importance of the complex interplay between biological, psychological and social factors and the importance this has on health and recovery, Helland writes.

- They have also downplayed the importance of physical activity for patients with ME. Today we have good knowledge that physical activity has many positive effects on both physical and mental health.

- It is, of course, a matter of course that all activities are adapted and adapted to the individual's symptoms, level of function and strength. Activity that goes beyond the individual's endurance, causes worsening of symptoms and must be avoided.

Helland believes that there is a lot of good in the new guidelines from NICE, but that the recommendations for treatment measures have become too passive.

"Although no medicine or other effective treatment for CFS / ME has been found to date, there are a number of measures that can relieve unpleasant symptoms, contribute to constructive coping and improve the patient's function and quality of life," she writes.
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The point that we don't have "good knowledge" on the positive effect of physical activity when it comes to pwME was clearly missed ;)

Opinion piece by Ola Didrik Saugstad and Rolf Rønning. For me there were many good point in this piece, but they were covering so much ground I think some parts will be difficult to grasp for those without prior knowledge.

ME-pasientene fikk rett!
ME patients were right!

Opinion piece by Nina Steinkopf urging our health minister to take action in light of the new NICE guidelines

Ta grep raskt, helseminister Ingvild Kjerkol!
Take action quickly, Minister of Health Ingvild Kjerkol!
 
Kalliope said:
The Norwegian ME Association, The National Competence Service for CFS/ME and the Norwegian Institute for Public Health are organising a research conference in Oslo November 22-23. The conference is aimed at researchers, health care personnel and students.

Lecturers:
  • Karl Johan Tronstad
  • Marte Viken
  • Kjartan Sarheim Anthun
  • Jonas Bergquist
  • Anne Kielland
  • Ingrid Gurvin Rekeland
  • Anthony Komaroff
  • Vegard Bruun Bratholm Wyller
  • Nina Langeland

There will also be a separate conference in the afternoon of November 23. which is open for everyone. More information will be provided soon.

https://www.me-foreningen.no/2021/09/30/forskningskonferanse-2021/
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The program for the other conference is now available. This one is open for everyone, whilst the research conference November 22-23 is only for researchers, health care personnel and student. Both are organised by the Norwegian ME Association and takes place in Oslo. On their facebook page they say that the conference will not be streamed, but that some talks might be shared after the conference is over.

Program translated to English by me.

A survey among ME patients in Europe: Does Norway stand out?
Assisting General Secretary Trude Schei and board member Arild Angelsen, The Norwegian ME Association

Harmful relations between health services and ME patients
Researcher Anne Kielland, Fafo

Disease mechanisms in ME/CFS - a model
senior doctor Øystein Fluge, Haukeland University Hospital

Short update from ME-center in Uppsala - what can we learn from post-covid in relation to ME?
Professor Jonas Bergquist, Uppala University

Panel debate
Led by journalist and author Jørgen Jelstad

More information and tickets here
 
I have written about the lack of research ethics education in Norway before, but now there's yet another report that criticises our universities for not having a system to make sure employees are educated about research ethics, and also for not having good systems in place to discover/handle/report potential ethical breaches.

Study of research ethics in the higher education sector in Norway (Norwegian webpage)
 
News article about the opening of the new ME clinic in Umeå, Sweden.

The patients will be sent back to primary care after receiving their diagnosis. The clinic will not be offering any kind of treatments, and they will not be doing any home visits to the severely ill. :(

Både glädje och oro vid smygstarten för nya mottagningen för ME-sjuka
https://www.folkbladet.nu/2021-11-1...smygstarten-for-nya-mottagningen-for-me-sjuka
Auto-translate said:
Despite the inauguration, recruitment is still ongoing for parts of the specialist team (doctor, occupational therapists, physiotherapists, psychologists and social workers) who will share their posts at the ME clinic with their regular workplace.

- The symptoms of ME do not look the same for all patients and can also vary over time, which is why an interdisciplinary assessment is needed, with different specialties and different perspectives when assessing them, explained Anna Nordström and continued:

- If we confirm the diagnosis, we provide the referring physician with information about what we have found and the severity. There is currently no cure for the disease, but we can suggest how the symptoms can be treated. [...]

But it is precisely the fact that primary care plays a key role that worries ME sufferer Malin Carlbom, who has deteriorated since Folkbladet last spoke to her and is now bedridden.

"This scares me enormously as my experience of many years of illness is that primary care has zero knowledge of ME. I have friends who live in Stockholm and after a long period of treatment at Stora Sköndal's ME clinic were discharged to absolutely nothing and today are back in the same vacuum they were in before the investigation and diagnosis", she writes in an email to Folkbladet where she also criticizes the primary care and the new clinic for not making home visits to the seriously ill patients.

"I honestly don't understand what would be different in relation to primary care if I were to get a confirmed diagnosis. And it makes me both angry and afraid that the ME clinic chooses to interpret the political decision as meaning that they are only responsible for investigation," Malin Carlbom continues.

According to Anna Nordström, a senior physician, the specialist team has too few resources to make home visits.

- We would love to do home visits but we have an extremely limited budget which makes it even more difficult, and we want all team members to be involved. We are trying to think outside the box. Now that we have digital tools, how can we do the best for a group that is vulnerable in terms of fatigue and coping," the senior physician replies, leaving the questions about resources and organization to the politicians and the responsible manager. [...]

Thanks to the pandemic, we have also become more adept at using digital solutions. You can have a physiotherapist in your home town to help with the assessment and examination of the patient," replies Jennie Liling Ståhl.
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Many thanks to Malin Carlbom for always telling it like it is. I'm super grateful for all your invaluable advocacy work over the years :thumbup::hug:
 
The Norwegian Public Broadcaster, NRK, writes about BII - Breast Implant Illness. The diagnosis is not recognised by WHO.
Symptoms can be fatigue, loss of memory, rash, brain fog and joint pain. Several of the women with BII that NRK had been in touch with, had been diagnosed with ME or fibromyalgia.

I've never heard of it before. What do you think? Could BII have overlapping symptoms with ME, or could implants be a trigger for ME and/or fibromyalgia?

Silikonsyke
google translation: silicon disease
 
A big article about ME in the Norwegian local newspaper Stavanger Aftenblad.

It is paywalled, so here's a summary:

It features Sissel Sunde, ME sufferer and patient advocate who developed ME after a Dengue infection six years ago. She's tried 22 different treatments without getting better, and has spent over 2 000 days indoors.

Professor Karl Johan Tronstad is interviewed and talks briefly about his research work. He says that they've analysed 1700 substances in the blood in ME patients and found changed levels in over 300 of them.
- "We have seen patterns that have not been discovered before". "We need to understand what ME is in order to provide correct treatment for the patients. We believe and hope for a lot of progress in this field going forward".

Leader of The Norwegian ME Association, Rogaland, Åse Marie Lønning says that the patient group is heterogeneous, and it's important to find a biomarker that can distinguish between ME and other patient groups.

One of the treatments Sissel Sunde has tried is the 4-day intervention to psychiatrist Bjarte Stubhaug. He recommended routines for sleep and meals, walks and mindfulness. He said that ME is the same as having a bad period and that she wasn't sick, but vulnerable to stress.

Bjarte Stubhaug is interviewed an says he doesn't recognise what's being said about his treatment. He says he challenges people's thoughts and behaviour about the illness and talk about vulnerability, which can explain why some people get sick and have a different response to for instance mononucleosis and corona. He says that no one are invited for any "ME treatment" but to a treatment programme for coping with stress, fatigue and health problems.

A former patient who recovered from ME by Stubhaug's treatment says she had been ill for 17 years but is still healthy today four years after the treatment.

Leader of the Lightning Process Association, Kristin Blaker, says that LP is no treatment for any illnesses, but a self help course for motivated people who want to learn about the interaction between mind and body.
Recovery Norge is mentioned, but the newspaper was not able to get hold of anyone from that organisation.

Professor Silje Reme who did a qualitative study on LP believes the scepticism towards LP could be due to the course being perceived as a form of alternative treatment. She has been an observer on an LP course and doesn't share that impression.

Towards the end the NICE guideline is mentioned and that ME is now defined as a complex, chronic medical condition. It also says that GET and CBT is abandoned and that LP is warned against.

The article mentions some of the protest to the guidelines from health care workers and researchers.

https://www.aftenbladet.no/lokalt/i...andlinger-de-siste-aarene-men-blir-ikke-frisk
 
They were talking about ME and exhaustion disorder/burnout on the Swedish morning tv-show Malou Efter Tio today. With pwME Niklas, his partner Vanja Wikström who works as an influencer, and prof Jonas Bergquist.

(I haven't been able to watch it myself.)

Video, 18 minutes, in Swedish:

”Viktigaste personen i mitt liv” – se tårfyllda hälsningen från Niklas till Vanja
https://www.tv4play.se/program/malou-efter-tio/viktigaste-personen-i-mitt-liv-se-tårfyllda-hälsningen-från-niklas-till-vanja/13730031
Auto-translate tv4play.se said:
Vanja has been together with Niklas for 15 years and they have two children. A normal family - except that Niklas was diagnosed with ME at the beginning of the year. Before Niklas became ill, he was extremely active and sporty. Today he is bedridden and unable to contribute to family life. See Niklas' tearful greeting to his Vanja.
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Video, 3 minutes, in Swedish:

Vanjas sambo Niklas har ME: ”Han har fått hela sitt liv kidnappat”
https://www.tv4.se/artikel/LlxA1Pqn...s-har-me-han-har-fatt-hela-sitt-liv-kidnappat
Auto-translate said:
Vanja's live-in boyfriend Niklas has ME: "He's had his whole life kidnapped"

Yesterday 09:10 - 3 min 18 sec

Tough challenges in everyday life - "Being single"

- I see myself as a single mother, says influencer and entrepreneur Vanja Wikström.

Vanja has been together with Niklas for 15 years and they have two children. A normal family, except that Niklas was diagnosed with ME at the beginning of the year.

Before Niklas became ill, he was extremely active and sporty. Today he is bedridden and unable to contribute to family life.

- His whole life has been kidnapped," she says.

In the player above: Hear Vanja talk about life with her ME-sick husband and the challenges they face.
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Vanja Wikström has blogged about it here:

Känslosamt hos Malou i dag
https://vanjawikstrom.motherhood.se/me/kanslosamt-hos-malou-i-dag/
Auto-translate said:
That is perhaps the most disgusting thing about this diagnosis: that those affected are no longer allowed to BE THEMSELVES. They are reduced to something else, as there is no energy to live and act in the way they would like. They are forced to put all their dreams, hopes and desires for the life they had seen ahead of them (and lived, until the diagnosis) on hold - to concentrate solely on surviving the present. But that doesn't mean that all those hopes and desires to live their lives are no longer there. Niklas is exactly the same über-capable, enterprising, creative, smart and competent man he always was - it's "just" that he doesn't HAVE THE ABILITY to act in the way he wants to right now. Because something is stealing his energy. :broken_heart:
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Here's another article about Vanja, published a couple of weeks ago:

Vanja Wikström om alkoholproblemen, ME och vardagsglädje
https://www.wellness.se/halsa/a/wOvBBL/vanja-wikstrom-om-alkoholproblemen-me-och-vardagsgladje

Google Translate, English ("Vanja Wikström on alcohol problems, ME and everyday joy")

And another article published a month ago:

Vanja Wikström kraschade när sambon fick ME: ”Kroppen skrek efter hjälp”
https://www.baaam.se/halsa/vanja-wikstrom-om-kraschen-och-sambons-diagnos/7929342

Google Translate, English ('Vanja Wikström crashed when her partner got ME: "The body screamed for help"')

Malou Efter Tio on Facebook said:
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Vanja Wikström posted on Instagram (she has more than 35 000 followers):
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A bit more info about the petition Vanja Wikström mentioned.

"For better ME healthcare", by Björn Eklund (who has recovered from ME, author of the book "From bedbound to marathon")

För bättre ME-vård
https://www.skrivunder.com/for_battre_me-vard
Petition auto-translate said:
There are 1000 primary care health centres in Sweden. That sounds good. But if you've fallen ill with ME, the public health service will turn its back on you. This has been the case since the Asian pandemic ravaged Sweden in the late 1950s. For at least 60 years.

Many, many people have had their lives ruined in those 60 years because of this terrible disease. And because nothing has been done.

So it's high time something was done.

First and foremost, the government must commission the National Board of Health and Welfare to carry out a new "review of the state of knowledge of ME/CFS". Last time, in 2018, the National Board of Health came up with ...nothing.

Something that means that seriously ill people are still left to their fate. Both by the health care system and by the Social Insurance Agency.

Now, with postcovid and ME's similarities to that disease, the starting point for a review should be quite different.

We want:
  • That the government commissions the National Board of Health and Welfare to conduct a new review inquiry. Something that could lead to new "national guidelines" which in turn could lead to the care in Sweden taking ME seriously.
  • That all doctors working in health centres know what ME is. Extra training is then needed for the doctors who work now and that ME is included in medical training.
  • That a ME research centre with specialist doctors is set up in Sweden. Other doctors in the health service can turn to this centre for advice on, for example, testing and treatment.
  • That the new review investigation also applies to medical insurance decision support (FMB) so that the Social Insurance Agency does not turn down people who are seriously ill.
The petition will be submitted to the Swedish government (the Minister of Social Affairs), the Director-General of the National Board of Health and Welfare and the chairmen of the regional councils in Sweden's 21 regions.

Translated with www.DeepL.com/Translator (free version)
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(I have mixed feelings about the petition and Eklund's overall message, that's why I haven't signed it or promoted it. I don't believe demanding national clinical guidelines for ME or another government inquiry/report is helpful at this point in time. Also, patient safety and scientifically sound, accurate facts are very important to me, and I have a strong dislike for when personal anecdotes are overhyped. )
 
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A letter from #MEvårdsaknas (ME-healthcare is missing) sent to those in charge of the new ME clinic in Västerbotten:

With help from Google Translate:

First, the new reception has announced that they do not have the resources to make home visits [2]. This means that the most seriously ill will be excluded from specialist care. Those who try to get to the reception because they are not given any other alternative risk a medical injury. It is well known and a mandatory criterion to be able to diagnose that people with ME are aggravated by too high a load. For those who are seriously ill, it may be enough to try to leave the bed. So starting an ME clinic and not budgeting for home visits is as unreasonable as putting an orthopedic clinic five stairs up and saying that you can not afford an elevator. Have those responsible really understood what "effort" means for people with severe ME, and that being forced to leave their home can lead to a lasting worsening of the disease?

Secondly , the new clinic claims to have neither treatment nor rehabilitation responsibilities, but refers to the fact that this is in primary care [3]. The reception should only provide advice on further measures [4]. Anyone who has had the diagnosis confirmed via the new clinic thus risks ending up straight back in the dysfunctional primary care you are just coming from. And those who previously with a risk to their health went to another county for investigation will completely lack opportunities to receive treatment and support from specialist care at home.

Thirdly , the only doctor so far working at the reception in parallel with a rehabilitation project for people with ME where the patient association RME has assessed that the participants risk permanent deterioration due to excessive load [5]. This makes us worried about how the new clinic will set up its operations, how they view the risks of effort-induced deterioration and whether the knowledge about ME is really sufficient among the responsible staff to start receiving patients.

For the fourth, the reception has announced that a self-referral from a patient in another region must be signed by a specialist doctor at managerial level (for example, the manager of the health center) to guarantee that the region will bear the costs. This is not unique to referrals to the ME clinic, but it will put a dent in the wheel for this group as many have BIG problems with their "regular" care. Some have no good relationship with their doctor, others are denied home visits and thus have zero contact with care in their own region. Such a thing can make one partly pie the fragile relationship that exists but also risk excluding some completely from specialist care by denying them a signature. We already know that there are people who have refrained from sending their own referral to the new reception due to the requirement for a signature.Surely it must be possible for the regions themselves to take care of the finances among themselves so that the patients do not end up in this seat?
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https://mevardsaknas-wordpress-com....r_sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=nui
 
Agree…

mango said:
(I have mixed feelings about the petition and Eklund's overall message, that's why I haven't signed it or promoted it. I don't believe demanding national clinical guidelines for ME or another government inquiry/report is helpful at this point in time. Also, patient safety and scientifically sound, accurate facts are very important to me, and I have a strong dislike for when personal anecdotes are overhyped. )
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