News from Scandinavia

Midnattsol · Sep 19, 2021

Not ME related, but in "Dagens Medisin" there is an article now about pwDiabetes, where the doctor says it is important to not downplay risks of relapse if the patient no longer qualify for a diabetes diagnosis due to blood glucose levels below the diagnostic threshold (for example due to a change in lifestyle).

Just a very different perspective than talking about hope for recovery. Another recent article on heart health stated that the evidence base for using exercise as treatment is poor (and they were doing a new study to get better evidence). Again, very different from what we're told time and time again - even if the evidence base when it comes to pwME is even poorer.

mango · Sep 27, 2021

Vetenskapsradion På Djupet: De mystiska sjukdomarna postcovid och ME – kan forskarna lära av varandra?
https://sverigesradio.se/avsnitt/de...stcovid-och-me-kan-forskarna-lara-av-varandra

(Audio, 20 minutes, in Swedish.)

Auto-translate said:

Science Radio In Depth: The mysterious diseases of post-covid and ME - can the researchers learn from each other?

After a viral infection comes symptoms like fatigue, brain fog and pain. This is true of both ME and postcovid - so what can research into the diseases learn from comparing them?

Comparative scientific studies of post-covid and ME patients are now underway. This is a unique opportunity to follow a group of patients with a new disease that follows a viral infection, says Professor Jonas Bergquist at the Biomedical Centre at Uppsala University.

Kerstin Heiling, President of the National Association of ME Patients, believes that post-covid research can draw on much existing knowledge from ME research, to the benefit of both patient groups.

The programme also features Hanna Fries, a doctor and ME patient.

Participants: Hanna Fries, ME-patient Knivsta; Jonas Bergquist, Professor analytical chemistry and neurochemistry Biomedical Centre Uppsala University; Kerstin Heiling, President of the National Association of ME-patients.
Click to expand...

mango · Sep 27, 2021

Vetenskapsradion Nyheter: Postcovid kanske kan lösa gåtan med ME
https://sverigesradio.se/artikel/postcovid-kanske-kan-losa-gatan-med-me

(Audio, 2 minutes, in Swedish)

Auto-translate said:

Science Radio News: Postcovid may solve the ME puzzle

Comparative scientific studies between ME patients and postcovid patients are now underway.

It is hoped that the similarities between the diseases will speed up better help for both groups of patients.

Because although the neurological disease ME has been defined for many decades, there is still no cure and no knowledge of why some people are affected.
Click to expand...

mango · Sep 30, 2021

The ArchMethod has started popping up in certain Swedish ME groups lately. It's an alternative kind of low-level transcranial laser therapy, it seems?

One of the sellers says she has recovered from ME.

I haven't bothered reading up on it, but I'll leave the link here in case anyone else would like to find out more. (Not a recommendation!)

https://humanrecharge.com/archmethod-science/

mango · Oct 1, 2021

Ny studie ger hopp för ME-sjuka: ”Stort steg”
https://www.expressen.se/premium/halsa/ny-studie-ger-hopp-for--me-sjuka-stort-steg/

A paywalled Swedish mainstream news article today, about the Gotaas et al CBT study. Seems to be based on the Norwegian Dagbladet news article published in May?

Auto-translate said:

New study offers hope for ME sufferers: 'Big step'

A major new study gives hope to ME sufferers.

Researchers have identified three subgroups of the disease - a discovery they hope will lead to more targeted treatment and a better understanding of how the disease works.

- If we can offer a more specific treatment, it will be a big step forward," says Ingrid B. Halland, Head of Operations at the National Competence Service for CFS/ME.
Click to expand...

Anna H · Oct 1, 2021

mango said: ↑

Ny studie ger hopp för ME-sjuka: ”Stort steg”
https://www.expressen.se/premium/halsa/ny-studie-ger-hopp-for--me-sjuka-stort-steg/

A paywalled Swedish mainstream news article today, about the Gotaas et al CBT study. Seems to be based on the Norwegian Dagbladet news article published in May?
Click to expand...

It's a shortened and translated version of this article from September 19 (pay walled)
https://www.dagbladet.no/tema/me-forskere-har-funnet-tre-undergrupper/74229259

Translated excerpts from Expressens article "Ny studie ger hopp för ME-sjuka: Stort steg":

DeepL translation

New study offers hope for ME sufferers: 'Big step'

Researchers have identified three subgroups of the disease - a discovery they hope will lead to more targeted treatment and a better understanding of how the disease works. "

" In a large study, published in the Journal of Clinical Investigation, Karl Johan Tronstad, a professor at the Institute of Biomedicine at the University of Bergen in Norway, and his colleagues compared the biochemical composition of blood samples from people with ME, with a control group of healthy people.

Largest study of its kind
The researchers could see that there were big differences between the blood samples of ME patients and healthy people - but also that there were clear differences within the ME group. For example, the ME patients had different levels of a number of substances that involve energy metabolism."

"The Bergen study is a start and an important contribution, but senior researcher at the University of Oslo and head of research at the National Institute of Public Health, Signe Flottorp, says that there are currently not enough scientific findings to definitively define definitive subgroups of ME.

- In both somatics and psychiatry, there will always be some patients who experience an effect of a treatment and some who don't, and that also applies to patients with ME, she tells Dagbladet.

She reminds us that subgroups are not just about biomedicine and genetics, but that in a holistic approach to the patient, healthcare professionals should always take into account personality, living conditions, previous experiences and life stresses.

- Such conditions can also affect the expected effect of different treatments, says Signe Flottorp."
Click to expand...

"It is not only in Bergen that subgroups of ME have been found. In Trondheim, researchers at the Norwegian University of Science and Technology and the Pain Center at St. Olav's Hospital have conducted a so-called treatment study. The aim has not been to identify the cause of ME, but to find out whether ME patients can benefit from cognitive behavioural therapy.

The study, published in the prestigious journal Frontiers in Psychiatry earlier this year, found that individual cognitive-behavioural therapy improves physical function in patients diagnosed with mild to moderate ME/CFS. However, the Trondheim researchers also found that there was wide variation among ME patients.

- Some experienced a very good effect of the treatment, some little effect and others none at all," says Merethe Eide Gotaas, researcher and author of the study."

"- We are dealing with a group of patients with the same diagnosis, but who still experience such a different treatment effect. Our aim is to find the patients who can benefit most from cognitive behavioural therapy.

Finding characteristics of subgroups allows researchers to better predict who will experience an effect, but also who is unlikely to experience any effect from cognitive behavioural therapy.

- In this way, we can avoid that patients have to undergo a treatment that they will probably not benefit from, says Merethe Eide Gotaas til Dagbladet."
Click to expand...

mango · Oct 1, 2021

Anna H said: ↑

It's a shortened and translated version of this article from September 19 (pay walled)
https://www.dagbladet.no/tema/me-forskere-har-funnet-tre-undergrupper/74229259

Translated excerpts from Expressens article "Ny studie ger hopp för ME-sjuka: Stort steg":
Click to expand...

Thank you so much, @Anna H

I just noticed that the Swedish health magazine MåBra has published an article too, based on Expressen and Dagbladet's articles:

Studie: Kan finnas undergrupper av ME – öppnar för bättre behandling
https://www.mabra.com/medicin/forskning-me-cfs-kan-finnas-undergrupper/7907150

Google Translate, English

mango · Oct 2, 2021

A new motion to the Swedish Riksdag (Parliament), submitted 1 October, 2021.

Bättre behandling för människor med diagnosen ME/CFS
https://www.riksdagen.se/sv/dokumen...handling-for-manniskor-med-diagnosen_H9022241

Auto-translate said:

Better treatment for people diagnosed with ME/CFS

Motion 2021/22:2241 by Maria Stockhaus (M)

Proposal for a Parliamentary Decision

The Riksdag endorses the motion on the need for better diagnostic support for doctors in the case of ME/CFS and announces this to the Government.

The Riksdag endorses the motion that knowledge of ME/CFS needs to be included in medical training, and announces this to the Government.

Reason

ME/CFS is an acronym for myalgic encephalomyelitis/chronic fatigue syndrome. ME/CFS is classified as a neurological disease by the World Health Organisation (ICD G93.3), formerly known as chronic fatigue syndrome, and is characterised by prolonged fatigue with severe functional impairment.

The cause of ME/CFS is not fully understood, but many suffer from an infection associated with the onset of the disease from which the patient never recovers. The disease is characterised by unexplained fatigue/exhaustion that has lasted for more than six months. The exhaustion cannot be rested away and there is also deterioration after exertion which can persist for days, weeks and even months. ME/CFS affects activity levels and functional capacity and patients often experience partial or complete impairment in their ability to work, which also corresponds to the severity of the disease

Many sufferers feel that they do not receive the right support and treatment from the health care system.

Treatments are available, but far from everyone has access to them.

The cost to society of long periods of sickness absence is high, as is the human suffering, especially if people feel that their health care is not taking them seriously.

More support is needed for doctors in primary care when it comes to diagnosis and treatment. Knowledge of the disease, and not least the link to previous viral diseases, needs to be included in medical training.
Click to expand...

Kalliope · Oct 3, 2021

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/

mango · Oct 5, 2021

Västra Götalandsregionen: Nytt avtal skrivs med Smärthjälpen Sverige AB
https://www.pressmachine.se/pressrelease/view/nytt-avtal-skrivs-med-smarthjalpen-sverige-ab-32847

Smärthjälpen is a privately owned BPS pain clinic...

Auto-translate said:

New agreement signed with Smärthjälpen Sverige AB

Region Västra Götaland's Healthcare Committee signs an agreement with Smärthjälpen Sverige AB in Gothenburg for diagnosis and treatment of fibromyalgia, prolonged pain not related to cancer, and/or Myalgic Encephalomyelitis (ME).

Region Västra Götaland's Healthcare Committee already has a contract with Smärthjälpen with the same scope and mission, but this expires on 31 December 2021 and cannot be extended.

The new contract is being written following a tender process that has now been completed. The contract is valid for the whole of 2022 and can be extended for a maximum of twelve months.

The mission of Smärthjälpen includes specialist level investigation, assessment, diagnosis and, for a limited period, treatment of adults with suspected fibromyalgia, long-term pain (not cancer-related) and/or ME (also known as chronic fatigue syndrome/CFS).

In parallel with the new agreement for 2022, the investigation into how care for these patient groups should be organised in the future continues.
Click to expand...

mango · Oct 6, 2021

mango said: ↑

According to a Region Västerbotten job listing for a psychologist, the planned ME clinic in Umeå will be at the Lifestyle Unit, which is part of the Occupational and Behavioural Medicine Centre. The original plan was the geriatrics unit, so this is an "interesting" change...

Psykolog till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå
https://www.regionvasterbotten.se/jobb?itemid=b4031b0175b31db3d6a3a20d642bca77

Google Translate, English

I can't help noticing that the section Qualifications doesn't mention knowledge or experience of ME...

Here's some more info about the life medicin unit:

Region Västerbotten: Arbets- och Beteendemedicinskt Centrum Umeå: Livsmedicin
https://www.regionvasterbotten.se/o...h-beteendemedicinskt-centrum-umea/livsmedicin
Click to expand...

Two more job listings for the planned ME clinic in Umeå, Sweden:

Fysioterapeut till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå
https://www.regionvasterbotten.se/jobb?itemid=85e26ef800934234f2d6c0e6dcc82d16

Auto-translate said:

Physiotherapist for our new ME clinic (Myalgic Encephalomyelitis), Umeå

Application deadline 2021-10-18

Region Västerbotten works to ensure that good health and sustainable development are mutually reinforcing. We take responsibility for an equal welfare and for research and innovation to produce results.

We are looking for YOU who wants to be part of the start-up of the first clinic for Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome or Post-Viral Fatigue (ME for short) in Northern Sweden. The main mission of the clinic is to support primary care in the investigation and development of care for the patient group in the region, but it is also open to patients from other regions. A person-centred approach and high quality will be the basis of our work and through digital transformation work we increase accessibility.

The ME clinic will be a unit under the Department of Life Medicine. Life Medicine is an innovation and research unit whose mission is to support and conduct innovation and development work and research in the field of health, work, environment and lifestyle with a focus on digital solutions and e-health. Today, we are responsible for several EU and research projects in the field of lifestyle.

Job description

As a physiotherapist with us, you will contribute with knowledge and commitment that makes people feel safe and drive the rehabilitation process in such a way that the patient regains or maintains the highest possible quality of life.

You will work in an interdisciplinary team and will work independently and as part of the team on assessment and investigation. You will plan, adapt and implement the patient's exercise both in groups and individually and actively participate in planning discussions, care planning, rounds and meeting forums. Participate in home visits and/or workplace visits as needed. Keep abreast of new examination and treatment methods and new knowledge in the field and undergo further training in accordance with the clinic's competence planning and contribute to the development of the unit's work.

Your placement at the ME clinic will involve an employment rate of 20% or as agreed. The rest of the time, up to full time, you can be placed at another activity within Region Västerbotten.

Qualifications

We are looking for a qualified physiotherapist with knowledge of examining, assessing and treating physical well-being, pain, mobility and weakness in patients and assessing physical functional capacity using standardised instruments. You will have a strong developmental and research interest is desirable along with experience in evaluating/using national registries. You will have the ability to plan and organise your working day, be able to write physical function certificates. You must be able to document in accordance with the Health Care Act. Experience of working with NCS-cross and web-based care platforms is an advantage. We are looking for someone who is used to working independently and who is also comfortable working with different professionals.

Great importance will be attached to personal suitability
Click to expand...

Arbetsterapeut till vår nya ME-mottagning (Myalgisk Encefalomyelit), Umeå
https://www.regionvasterbotten.se/jobb?itemid=c22a1925ef77d619b6e08a443a2cdc0b

Auto-translate said:

Occupational therapist for our new ME (Myalgic Encephalomyelitis) clinic, Umeå

Application deadline 2021-10-18 [...]

Job description

As an occupational therapist with us, you will contribute with knowledge and commitment that makes people feel safe and drive the rehabilitation process in such a way that the patient regains or maintains the highest possible quality of life.

The assignment may include home visits and/or workplace visits together with the patient, family member and other team colleagues. It may also include assisting with any home adaptation applications, writing statements and any certificates regarding assistance needs and activity capacity. It is also important to follow developments in the field of occupational therapy and to undergo further training in accordance with the clinic's competence planning.

You will work in an interdisciplinary team and will work independently and as part of a team on assessment and investigation. On assignment, conduct lectures and other educational activities both within and outside the clinic.

Your placement at the ME will involve a 20% employment rate or as agreed. The rest of the time, up to full time, you can be placed at another activity within Region Västerbotten.

Qualifications

We are looking for someone who has previous experience and can assess assistive device needs, fitting and prescribing, during visits to the clinic and/or visits to the assistive device centre, and assess activity capacity using standardised instruments.
You have a strong interest in development and experience in evaluating/using national registers. You have the ability to plan and organise your working day. You must be able to document in accordance with the Health Care Act and to write certificates of functional capacity. Experience of working with NCS-cross and web-based care platforms is an advantage. We are looking for someone who is used to working independently and who is also comfortable working with different professional groups.

Great importance will be attached to personal suitability.
Click to expand...

mango · Oct 8, 2021

Halsont utlöste mardrömmen för Elisabeth – lever med både ME och POTS-syndrom
https://www.allas.se/halsa/elisabeth-drabbades-av-virusinfektion/7914566

Google Translate, English

Auto-translate said:

Sore throat triggered the nightmare for Elisabeth - living with both ME and POTS syndrome

Elisabeth was sure her viral infection would go away - but she never recovered. Instead, she was forced to spend nearly seven years in darkness, resting all day.

She sees the light in the tunnel after many years in the dark. But the surgery, which could make her well, costs more than a million kronor. And she has to pay the money herself...
Click to expand...

mango · Oct 8, 2021

Long covid on Swedish TV:

Malou Efter tio: Patric drabbades av corona – två gånger
Code:
https://www.youtube.com/watch?v=RwWFBO4UW3I
Så många drabbas av långtidscovid
https://www.tv4play.se/program/malou-efter-tio/så-många-drabbas-av-långtidscovid/13381079

mango · Oct 10, 2021

(Not a recommendation.)

RME (the Swedish ME Association) is arranging a webinar in collaboration with the Swedish EDS and Fibromyalgia patient organisations.

The title of the talk is "Long-term pain: psychological aspects - Pain in the body, pain in the soul"
(Långvarig smärta: Psykologiska aspekter - Ont i kroppen, ont i själen)

The speaker is Marcelo Rivano Fischer, psychologist.

I asked Google, and Google replied: CBT/ACT, graded exercise, graded activity, changing beliefs and managing emotions, teaching the patient about pain (fear, avoidance, pain catastrophization, hypervigilance, anxiety, depression, perceived helplessness, fear of movement/activity, "pain doesn't necessarily mean there's something wrong in the body", thoughts and emotions exacerbate the experience of pain, a sensitised nervous system becomes overprotective, psychological flexibility, etc), "lose weight to get rid of your pain", and so on.

List of publications:
https://portal.research.lu.se/porta...no(3185dd7e-ba25-4d05-a97f-b2ce6ef68d47).html

A talk on the cultural aspects of pain (video, in Swedish):
Code:
https://vimeo.com/110463002
Slides from one of his talks on the psychological aspects of pain (in Swedish):
https://docplayer.se/167955435-Marcelo-rivano-fischer.html

Långvarig smärta kräver teambaserad rehabilitering
https://lakartidningen.se/klinik-oc...rig-smarta-kraver-teambaserad-rehabilitering/

Smärta på gott och ont
https://www.vetenskaphalsa.se/smarta-pa-gott-och-ont/

(Edited to fix typos.)

mango · Oct 12, 2021

Vanja Wikström kraschade när sambon fick ME: ”Kroppen skrek efter hjälp”
https://www.mabra.com/psykologi/vanja-wikstrom-om-kraschen-och-sambons-diagnos/7931094

Auto-translate said:

Vanja Wikström crashed when her partner got ME: "My body was screaming for help"

Vanja Wikström is the influencer and entrepreneur who had several balls in the air - until one day it just didn't work. Here she talks about burnout and how she finds the bright spots in her everyday life. [...]

- I've been able to work around the clock, all the time, pushing, pushing, pushing, and it works for a while. But at some point you run out, and for me it was when we had children. At the same time, my boyfriend got sick and since then he's basically just got sicker and sicker and we've had more children. So there's more energy that I have to go out with every day. I have a lot less time for myself, for recovery, and then it ends up that it doesn't add up. And then you crash. [...]

- We were terrified because Niklas is ill and can't take care of the family, so it's very much up to me to make sure that our everyday life runs smoothly, and then I got a real wake-up call.

Vanja Wikström on her husband's diagnosis of ME

Vanja's partner Niklas lives with ME, formerly known as Chronic Fatigue Syndrome, and it is something that affects his quality of life and life circumstances to a very great extent.

- My boyfriend looks healthy, he's handsome, he looks happy in pictures but he feels like shit. Seventy-five percent of the time he's lying on a bed watching TV because he can't do anything else. His whole life is hijacked by a disgusting disease, but it doesn't show on him, and it also makes it that much harder for people to understand that it's actually real.

She continues:

- 'He can hardly do anything any more, which means that all the responsibility for the family, the children and the finances has been on me for the last few years.

Choosing to think positively and see the bright moments

How does this affect your family and your relationship?

- It's really hard for me, it's really hard for him. But we still have a very nice life I think, given the circumstances we have. Acceptance is perhaps the last and perhaps the most important step when you're feeling bad and have a difficult thing to get through. But now I've accepted it and somehow everything is much easier.

In what way does it get easier?

- It's easier to see all the good things we have and not just think that things could be better. You have to learn to think "how happy I am for what I have", rather than mourning what didn't turn out. Otherwise, the alternative is that you fall into the bitter and sad. You can find yourself there and I have found myself there. It's not a fun place to be, it's not a place you want to live your life.

So Vanja chose to put focus on what's good instead.

- It can be the little, little, little things. That Niklas could be up cooking for the family. That's something that's a given for many families, where they have two functioning parents, but not for us. It's a big thing and you have to take advantage of it and find energy in such bright spots.
Click to expand...

mango · Oct 13, 2021

(Not a recommendation.)

Yesterday's episode of the Swedish TV programme Fråga Lund was about ME and fibromyalgia, among other things.

https://www.svtplay.se/fraga-lund

I haven't watched it myself, but comments written by pwME on social media suggest it was "very unhelpful", biased, ill-informed and factually incorrect.

Kalliope · Oct 18, 2021

A very well written opinion piece for the Norwegian public broadcaster by a young, severe ME sufferer. I hope the google translation is ok, because this is well worth a read.

We have a new government and a new Minister of Health which is the 6th Minister of Health while Emilie has been ill. She hopes 6 is a lucky number and she has five suggestions for how the new Minister can improve the situation for ME patients.

Emilie Brandshaug: Et liv i permanent lockdown
google translation: A life in permanent lockdown

Quote:
ME patients have been left to fend for themselves in dark rooms for decades. While society opens up and people dance in the streets, thousands of Norwegians continue to live in permanent lockdown. I am one of them.

...
Some of the worst is the feeling that the authorities accept the situation, despite repeated cries for help. I feel powerless and worthless. This letter is my last hope to reach you with the opportunity to do something about the situation of the country's sickest.

Midnattsol · Oct 18, 2021

Here's to hoping that the sentence about prioritizing ME research in the new state budget leads to something.

Kalliope · Oct 25, 2021

Kalliope said: ↑

A very well written opinion piece for the Norwegian public broadcaster by a young, severe ME sufferer. I hope the google translation is ok, because this is well worth a read.

We have a new government and a new Minister of Health which is the 6th Minister of Health while Emilie has been ill. She hopes 6 is a lucky number and she has five suggestions for how the new Minister can improve the situation for ME patients.

Emilie Brandshaug: Et liv i permanent lockdown
google translation: A life in permanent lockdown

Quote:
ME patients have been left to fend for themselves in dark rooms for decades. While society opens up and people dance in the streets, thousands of Norwegians continue to live in permanent lockdown. I am one of them.

...
Some of the worst is the feeling that the authorities accept the situation, despite repeated cries for help. I feel powerless and worthless. This letter is my last hope to reach you with the opportunity to do something about the situation of the country's sickest.
Click to expand...

Emilie Brandshaug has received a reply from the Minister of Health

Veien ut av mørke rom
google translation: The way out of dark rooms

Quote:

Dear Emilie,

I understand very well that you are in despair. After many years with severe ME disease, you experience not getting the health care you need, and not having schooling or a job.

You're definitely worth saving, Emilie. And you are not left to yourself.

ME disease has been and is being researched. Both here at home in Norway and internationally. Researchers are still looking for the cause, and so far no safe treatment has been found.

I also believe that the research will give us more answers.

But we do not give up! We still have a great need for more knowledge and a better treatment offer. I totally agree with you. Research is expensive, but refraining from research is not an option. Therefore, we ask the Research Council to continue to prioritize research on ME.

Midnattsol · Oct 25, 2021

Referring to the national competence center's guideline while talking about the importance of children being able to go to school... the ME Association could have received some credit for their work in this area (including providing resources and training material for schools). And the misspelling at the end (MS, instead of ME) was rather unlucky in a final paragraph when a lot of the text is about increased understanding and helping patients

I'm a bit negative of our health services today, never mind me

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