News from Scandinavia

[Anders_Vang]

An update, the op-ed from Mehlsen/La Cour from the other day is no longer paywalled. Happy reading/G translating, same link: https://www.kristeligt-dagblad.dk/d...svigter-personer-med-kronisk-traethedssyndrom

ETA: Also, I just learned this change was due to a request from patients here who worked to gather the authors' consent to making this publicly available. That is so cool and really good to see the outlet respond positively.

 

[Ravn]

Article is part of a series of profiles of pwME in Denmark.

Propatienter: Controversial illness changed Rasmus' life

After five years with the disease myalgic encephalomyelitis (ME) - in Denmark often called chronic fatigue syndrome (CFS) - Rasmus Løkke Nielsen is no longer the man he once was. From being physically strong and using his strength in his work, he now has to plan his days according to when he should have a rest, before or after he does something.
[...]
At the political level, Minister of Health Magnus Heunicke (S) answered in resp. November 2021 and January 2022 on questions from Susanne Zimmer (FG) on how the Minister will ensure that health professionals receive education and training that is in line with the NICE recommendations, and how ME / CFS patients can get the latest and most well-documented treatment. To both questions, the Minister replied that "the area is characterized by a lack of professional consensus on how best to understand, delimit and treat the disease."
[...]
Professor and chief physician Per Fink, Aarhus University Hospital, strongly opposes the new guidelines from NICE and said in December to Propatients that “large and thorough studies document that graduated physical exercise and cognitive therapy have an effect on patients with ME or chronic fatigue syndrome. “
Opposite this is the ME Association, where the chairman of the board, Cathrine Engsig, said to Propatients in October:

“The new guidelines put an end to the stigmatizing myths that ME is psychosomatic and that patients can be trained healthy. The Danish healthcare system no longer has any excuse for continuing the mistreatment that Danish ME patients experience today. "

https://propatienter.dk/nyheder/4164-omdiskuteret-sygdom-forandrede-rasmus-liv.html

https://propatienter-dk.translate.g...=da&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

[Snowdrop]

I expect my opinion can be annoying but I don't think the rebuttal from Catherine Engsig was particularly helpful. No one had said anything about stigma so why go there. Better to have rebutted the idiotic view that the psych studies were scientific and that NICE reviewed them and found they lacked validity. Or something along those lines.

Missed opportunity IMO.

 

[mango]

Vanjas Wikström kraschade när sambon blev sjuk i ME: ”Som att vara ensamstående”
https://www.allas.se/relationer/vanjas-wikstrom-kraschade-nar-sambon-blev-sjuk-i-me/8233897

Vanjas Wikström crashed when her partner fell ill with ME: "Like being single"

Influencer and entrepreneur Vanja Wikström describes her partner Niklas' ME disease as having his whole life kidnapped. Some days he can barely stand up. Keeping the family's life puzzle afloat depends entirely on Vanja. But a year ago, her body also gave up.

Google Translate, English

 

[Anders_Vang]

I expect my opinion can be annoying but I don't think the rebuttal from Catherine Engsig was particularly helpful. No one had said anything about stigma so why go there. Better to have rebutted the idiotic view that the psych studies were scientific and that NICE reviewed them and found they lacked validity. Or something along those lines.

Missed opportunity IMO.

By no means annoying. I can see your point but for this particular article, the last section of quotes from Fink, Engsig and others was pieced together from different previous articles by the same outlet. So it ends up appearing as more of a 'conversation' than is in fact the case. I'm guessing neither of them was consulted again for this particular piece. Engsig's full testimony, responding to the NICE guidelines and particularly the classification of ME as a 'functional disorder' in Denmark, is here (and actually predates the quote from Fink): https://propatienter.dk/nyheder/3939-me-patienter-verden-over-har-faet-kaempesejr-i-dag.html

 

[Snowdrop]

By no means annoying. I can see your point but for this particular article, the last section of quotes from Fink, Engsig and others was pieced together from different previous articles by the same outlet. So it ends up appearing as more of a 'conversation' than is in fact the case. I'm guessing neither of them was consulted again for this particular piece. Engsig's full testimony, responding to the NICE guidelines and particularly the classification of ME as a 'functional disorder' in Denmark, is here (and actually predates the quote from Fink): https://propatienter.dk/nyheder/3939-me-patienter-verden-over-har-faet-kaempesejr-i-dag.html

Yes, I expect you're right and I did think of it after posting but I feel that while the stigma comment is very valid people who speak publicly to the press need to really be on top of things. The stigma issue (again while valid) is a soft issue and can only ever be an opinion even if true. Better to make a plain clear statement refuting some specific piece of misinformation when the opportunity presents itself. And repeating it again and again.

 

[Anders_Vang]

Yes, I expect you're right and I did think of it after posting but I feel that while the stigma comment is very valid people who speak publicly to the press need to really be on top of things. The stigma issue (again while valid) is a soft issue and can only ever be an opinion even if true. Better to make a plain clear statement refuting some specific piece of misinformation when the opportunity presents itself. And repeating it again and again.

I agree with you in principle although knowing the amount of work Cathrine is doing both representing patients in the media and advocating on our behalf behind the scenes with politicians, authorities and clinicians, I don't think the criticism applies to her -- e.g. she, along with others at the Danish ME Association, are really leading the way here in terms of helping refute misinformation and guide authorities to adopt a science-based approach to ME. It's just proving such an uphill battle and often hard to get the media interested in the nuts and bolts of the science. I think invoking the stigma in addition to this, given how widely patients experience it, is not a problem per se.

As a side-note on the matter of stigma, in Denmark the topic has seen a particularly strange twist as the Health Authority, when launching a set of scientifically baseless, so-called 'neutral' diagnostic codes under the 'functional diseases' umbrella a couple of years back, went to quite some length branding those as 'non-stigmatising' (official guidelines here: https://www.sst.dk/-/media/Udgivels...elser/Kodning-af-funktionelle-lidelser-1.ashx). The idea seems to be to 'de-stigmatise' functional disorders as a term, promoting these newly invented codes over actual diagnoses such as ME(!). It has been pretty astonishing to see this kind of push-back from authorities, clearly more interested in advancing a particular agenda/ideology than ensuring evidence-based diagnostics and treatments. I honestly don't completely understand their argument re de-stigmatisation, possibly because it doesn't make much sense... Anyway, apologies, long story.

 

[Snowdrop]

@Anders_Vang

Yes, thanks for the context which I don't have and of course matters when responding to things. Different countries will have some differences in the challenges they face vis a vis the BPS lies. It's even possible she provided a larger message which was then picked through to give a non-responsive response by the writer (this also occurred to me later as is often the case).

I am encouraged by her courage to persevere in the face of the institutional bad faith actors working to ensure they themselves benefit.

My point really was not a strong one. Though I will say I do still think that refuting the flawed science over and over might be a good tactic too.

 

[Anders_Vang]

@Snowdrop
All good, and glad you're encouraged by the advocacy work here -- I very much share the sentiment.

My point really was not a strong one. Though I will say I do still think that refuting the flawed science over and over might be a good tactic too.

Completely agree.

Just made me think to share a couple of pages at the Danish ME Association website that I find really useful, given that a lot of their work is quite transparent: https://me-foreningen.dk/om-me/me-og-politik/ for most political developments, e.g. correspondence with authorities and ministerial questions, and https://me-foreningen.dk/nyheder/nyhedskilde-2/ which collates basically all domestic media coverage of ME. Hopefully of interest to some in the forum despite being all in Danish.

 

[Kalliope]

A feature article (paywalled) in the Norwegian newspaper Klassekampen titled: Missing: Emilie

It's about 23 year old Emilie who suffers from severe ME.

The article describes in detail her every day life and the battle against those who should be there to help.

For instance when Emilie was still at school and a school outing was planned. Emilie's mother applied for a wheel chair in order to make is possible for Emilie to participate. The occupational therapist who received the application was instead about to send message of concern to the Child Welfare Services. The mother didn't ask the municipality for help again until Emilie had turned 18 and had become too old for the Child Welfare Services.

When the family moved to a new house, the scheduled ambulance never turned up, and they had to come up with an alternative solution on the spot.

The article described how inventive her family has been to find solutions to give her the care she needs and how she's too ill for visitors, so she communicated with the journalist on e-mail.

One of the questions Emilie is asked is what she'd do if she was Minister of Health for one day. She answers:

- Earmarked funding for biomedical research into ME over the state budget
- 24 hour institutional care for very severe ME sufferers
- An administrative coordinated care for ME sufferers in need of care, in order to lighten the burden of family carers
- An ME team in the municipalities with psychologists and school nurses

Psychologist Lishaugen in Emilie's municipality discovered the sub group ME patients when she started working with adolescents with long term school absence. She says they're a really invisible group. So alone with their parents. Often only in contact with their GP.

"I picture all the threads in their network, everything they have of school, hobbies, friends and neighbourhood, and see how each thread becomes more and more frayed. All of a sudden, this thread is gone as well. In the end it's just them".

https://klassekampen.no/utgave/2022-02-26/savnet-emilie
________________

This post has been copied to a new thread:
Norway - series of articles about ME in the newspaper Klassekampen, 2022

 

[Midnattsol]

A feature article (paywalled) in the Norwegian newspaper Klassekampen titled: Missing: Emilie

It's about 23 year old Emilie who suffers from severe ME.

The article describes in detail her every day life and the battle against those who should be there to help.

For instance when Emilie was still at school and a school outing was planned. Emilie's mother applied for a wheel chair in order to make is possible for Emilie to participate. The occupational therapist who received the application was instead about to send message of concern to the Child Welfare Services. The mother didn't ask the municipality for help again until Emilie had turned 18 and had become too old for the Child Welfare Services.

When the family moved to a new house, the scheduled ambulance never turned up, and they had to come up with an alternative solution on the spot.

The article described how inventive her family has been to find solutions to give her the care she needs and how she's too ill for visitors, so she communicated with the journalist on e-mail.

One of the questions Emilie is asked is what she'd do if she was Minister of Health for one day. She answers:

- Earmarked funding for biomedical research into ME over the state budget
- 24 hour institutional care for very severe ME sufferers
- An administrative coordinated care for ME sufferers in need of care, in order to lighten the burden of family carers
- An ME team in the municipalities with psychologists and school nurses

Psychologist Lishaugen in Emilie's municipality discovered the sub group ME patients when she started working with adolescents with long term school absence. She says they're a really invisible group. So alone with their parents. Often only in contact with their GP.

"I picture all the threads in their network, everything they have of school, hobbies, friends and neighbourhood, and see how each thread becomes more and more frayed. All of a sudden, this thread is gone as well. In the end it's just them".

https://klassekampen.no/utgave/2022-02-26/savnet-emilie

And at the same time Aftenposten and VG (and probably others) have another "got well after LP" article

 

[Kalliope]

Opinion piece by civil engineer and ME patient Benedikte Monrad-Krohn in the medical newspaper Dagens Medisin

quote:

Although research on behavioral therapies has not differentiated between patients with and without PEM, the results are still interesting. Some argue that "it is the best we have". But the results are not very good; effect corresponds to a medium placebo effect. In the long-term follow-ups, the control groups take over the treatment groups, and there is zero effect on objective goals where one has them.

One can't conclude with anything at all because the combination of unblinded studies and subjective outcome measures that many studies have, can give large biases in the results due to systemic biases, such as placebo effects.

The vast majority of research on behavior, ie exercise and therapy, is done on broad patient groups who only need to have had fatigue for a certain period of time. Fatigue is so unspecific that research does not yield useful results. It's like researching everyone who coughs, or anyone who has a stomach ache. Cough syrup and painkillers can help, but not on the underlying disease mechanisms - these can be very different

ME-forskningen må være til nytte for pasientene
google translation ME research must be of benefit to the patients

 

[Kalliope]

A great opinion piece by psychologist, author and ME sufferer Frøydis Lilledalen in the Journal for Norwegian Psychological Association.

She writes about "the circle of pain". How she was taught that patients increase their pain and suffering by focusing on them. But nobody taught her that this is just a hypothesis. And nobody talked about possible negative consequences for making the patients responsible for their pain. She says the circle of pain is not always wrong. But that doesn't mean it's always right.

She says that making the patient responsible for complex disease can disturb the relationship to the health care worker. A belief in self healing by one's own effort can also be destructive for the patients. Perhaps by moving focus away from pain, fatigue and multi systemic symptoms, it's the health care worker's needs that are taken care of, and not the patient's?

"In lack of alternative explanations and medical interventions, we end up with doing what we're trying to make patients stop doing: We do more of that which doesn't work"

Given that the treatment offered to ME patients today, being taught about the circle of pain, green and red thoughts, focus training and cognitive therapy, is reason behind improvement in 5% who recover, shouldn't we then develop a treatment offer also for the rest of the 95%?

Frykten for pasientens frykt
google translation: The fear of the patient's fear

 

[rvallee]

Given that the treatment offered to ME patients today, being taught about the circle of pain, green and red thoughts, focus training and cognitive therapy, is reason behind improvement in 5% who recover

Ah, it did so well until this. There is zero reason to attribute any recovery to this bunch of nonsense. It's not enough for medicine to take a stand against alternative medicine, it's the flawed principles that underlie it that need to be criticized, and attributing improvements (while ignoring deteriorations) to one's personal wishes is exactly how it fails in both alternative medicine and so-called evidence-based medicine.

 

[Kalliope]

Ah, it did so well until this. There is zero reason to attribute any recovery to this bunch of nonsense. It's not enough for medicine to take a stand against alternative medicine, it's the flawed principles that underlie it that need to be criticized, and attributing improvements (while ignoring deteriorations) to one's personal wishes is exactly how it fails in both alternative medicine and so-called evidence-based medicine.

I agree. But it seems almost impossible to get that point across, so it might have been a way to remind people of the large majority left without help, instead of raising a new round of CBT debate.

 

[mango]

Info sheet about POTS, in Swedish (Not news, but I didn't know where else to put it.)

It can be very difficult to find good information about POTS and other forms of orthostatic intolerance and dysautonomia in Swedish. Especially if you're looking for something short and easy to read, to share with family and friends or carers, for example. This is the best one I've found, so far I only discovered it today, and I feel it deserves a lot more attention + to be shared widely.

Published in 2020 by the Swedish Ehlers-Danlos patient organisation.

Vad är POTS?
https://ehlers-danlos.se/wp-content/uploads/2020/06/Vad-är-POTS-broschyr.pdf

 

[Hutan]

Members could create threads in the 'Resources for Health Professionals' subforum dedicated to resources in languages other than English e.g. 'Useful resources about ME/CFS and associated conditions in Swedish'. Even if the target audience of the resource is patients, it's still helpful for health professionals to know such resources exist.

 

[mango]

Members could create threads in the 'Resources for Health Professionals' subforum dedicated to resources in languages other than English e.g. 'Useful resources about ME/CFS and associated conditions in Swedish'. Even if the target audience of the resource is patients, it's still helpful for health professionals to know such resources exist.

Excellent idea, thank you! I've created a thread now

 

[Hutan]

Functional somatic symptoms in youths in general practice: A ... study on prevalence, clinical management and perceived burden, 2022, Klastrup et al
A paper from researchers at Denmark's Aarhus University that labels young people with undiagnosed symptoms as 'time-consuming and burdensome', although not as 'time-consuming and burdensome' as adults with undiagnosed symptoms.

 

[mango]

Swedish article about a Norwegian teenager with ME, in the sports section (horse/harness racing, trotting racing?).

”Säker på tillfrisknandet kan kopplas till hästen”
https://www.aftonbladet.se/sportbla...pernille-fann-raddningen-i-familjens-travhast

"I'm sure the recovery can be linked to the horse"

[...] Three years ago, the trainer's 13-year-old daughter Pernille contracted the neurological disease ME - after contracting a viral infection.

The condition was so severe that Pernille was unable to attend school or socialise.

Now, three years later, at 16, she is doing much better and the turning point came when she sought out the stable of the horse Jeanie B.R., without her parents' knowledge.

- It was a very difficult time for Pernille and the whole family. The disease ME is demanding and there was no medication available. As a father, it was incredibly hard to see his daughter feeling unwell. She gradually got worse and had no interest in horses at the time, even though we had always surrounded ourselves with horses. But for some reason she sought out the stables and formed a very special relationship with Jeanie and then she wanted to spend more and more time there. I'm sure the recovery can be linked to the horse," dad Rune told Trav365.

The turnaround: "Hard to explain"

When it was at its worst, Pernille lost her zest for life and she was often nauseous and dizzy, her energy completely gone.

Dad Rune, who lives in Tjodalyng in Larvik, still finds it hard to put into words what happened.

- She was sick and unwell every day, but the horse gave her so much joy that she slowly but surely recovered. Now I just hope the illness disappears completely from her body, but it makes a huge difference. Now she can be at school half time and life is pretty normal. It's hard to explain but I think there was an emptiness, where she got a lot of joy from the horse. The chemistry was right and it's amazing.