News from Scandinavia

Wyva said:
Article: Time to leave the ME/CFS diagnosis

OPINION: The ME/CFS diagnosis causes more harm than good. In today’s debate, ME/CFS is portrayed as a distinct, clearly defined disease. It is not.

by Live Landmark

www.sciencenorway.no

Time to leave the ME/CFS diagnosis

OPINION: The ME/CFS diagnosis causes more harm than good. In today’s debate, ME/CFS is portrayed as a distinct, clearly defined disease. It is not.
www.sciencenorway.no www.sciencenorway.no

I haven't read it yet, but I think the title and the author's name tell you basically everything about it.
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Haven't similar articles by Landmark been published recently? It's dated today and I seem to remember her managing to publish two articles arguing the same nonsense. Or maybe it's just re-published? Science Norway not living up to its name, arguing weird ideology like this.

It would be far better to drop all the psychosomatic nonsense. Now those are harmful diagnoses based on no real disease processes. What a total waste to have experts be so misguided, even worse to have institutions that enable it.
 
rvallee said:
Haven't similar articles by Landmark been published recently? It's dated today and I seem to remember her managing to publish two articles arguing the same nonsense. Or maybe it's just re-published? Science Norway not living up to its name, arguing weird ideology like this.

It would be far better to drop all the psychosomatic nonsense. Now those are harmful diagnoses based on no real disease processes. What a total waste to have experts be so misguided, even worse to have institutions that enable it.
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It’s the same one, just translated to English.
 
Saw this on Mastodon
@hellebelle@mastodon.social said:
Great News!

The Danish short Best Practice has been selected for the OFF-Odense Film Festival and the Friss Hús Budapest International Short Film Festival.

According to director Martin Strange-Hansen it’s “a short film touching on M.E. #MyalgicEncephalomyelitis and the grey line between being a professional or a human on your job.”
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The actor playing the brother, Hjalte Ilsøe Gustavussen, is the real life brother of servere ME-patient Marie Louise Ilsøe Gustavussen. So I guess he didn’t have to dig too deep to find the emotions needed. But also a good way to express what his family has been through the past years.
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There's a trailer on Vimeo with English subtitles:



There's a brief description on imdb, no mention of ME/CFS:

 
Ravn said:
Long article in Swedish about the state of LC “care” in Finland. Can be summarised as dominated by ignorance (how about: eat vegetables?!) and functional rehabbers. Sadly unsurprising. Autotranslation

Doctors are torn about how to care for post-COVID patients while patients like Sara suffer: "Unbelievable that you don't get help"​
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Thank you for posting. Good to see Akiko Iwasaki towards the end talking a bit about medical research into post infectious illness.

In the article there is a Finnish senior doctor Hélène Rotkirch Virrantaus who says Long Covid symptoms appear in the "psychophysical" whole we humans are. That a virus infection has led to defence mechanisms in the central nervous system which continue to falsely alarm. If you can gain the patient's trust, the patient will feel safe and can return to his or her everyday life with confidence. The patient can trust that nothing is wrong or broken in the body, but it's just the alarm system being a bit too active.

This doctor is co author of a paper titled "Persistent physical symptoms not explained by structural abnormalities or disease processes: a primary care approach to promote recovery". Some other authors are Trudie Chalder, Signe Flottorp, Paul Garner, Live Landmark.
 
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«According to Rotkirch Virrantaus, criticism of the clinic is often due to the fact that the message of the operation is misunderstood»

because the BPS message is designed so it can’t be understood, just a constantly moving target of nothingness.

I dont understand why they believe thoughts and behaviour must be the cure, if they believe the cause is a virus triggering the central nervous system. She says «it’s the same mechanism that makes you feel butterflies in your stomach when you’re nervous or feel uncomfortable when standing at a high altitude.»

If someone has a fear of public speaking, assuring them that it’s not dangerous doesn’t stop the butterflies in their stomach. People can try to change their thoughts and behaviours all they like but they will still feel uncomfortable with heights. So if it’s the same, why should it be as simplistic as just telling the patient to feel safe?
 
thesicktimes.org

Research updates, May 26 - The Sick Times

A new preprint linked Long COVID symptom severity with higher DNA levels of the herpesvirus HHV6. The study enrolled 45 people with Long COVID, comparing them with matched controls. Participants self-collected saliva at specific time points over two days and completed detailed questionnaires...
thesicktimes.org thesicktimes.org

Members of the Swedish advocacy group Svenska Covidföreningen (Swedish Covid Forum) recently published a resource, “Designing Studies for Patients with PEM,” or post-exertional malaise, to improve research methods into ME and Long COVID. “We have compiled best practices and recommendations for study design in this guide, specifically aimed at researchers,” the authors wrote. They state that patients must be involved in studies from early stages and that the risks associated with PEM must be described in the ethics application, among other recommendations.

 
Dolphin said:
Members of the Swedish advocacy group Svenska Covidföreningen (Swedish Covid Forum)
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FYI: this is the Swedish Covid Association, i.e. the patient organisation. The auto translate might have made a mistake.

It’s a shame they start off by saying that 50 % of LC patients have PEM. Anyone that bothers to check the sources will see that the design of the studies does not allow us to make general statements about the rate of PEM in the entire LC population.

Using «PEM/PESE» throughout the text is just confusing.

The have a section about the causes of PEM, even though we have no clue about it. There’s also lots of talk about «energy thresholds».

They list DSQ as a suitable way to identify PEM.

There’s some kind of myth-busting at the end about wrong assumptions that can be made about PEM.

I think it’s well intended, but my overall impression is that this won’t really help researchers that don’t already understand what PEM can look like and how to deal with it in a study setting.

It also doesn’t feel like they’ve prioritised well enough, and very important information (like using long term tracking with objective activity measurements) is hidden away.
 
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