News from Scandinavia

The assistent general secretary for the Norwegian ME Association has written a letter to the editor to a news site about medicine on how hard it can be to "get through" to doctors, particularly with conditions that mostly strikes women.
She uses ME, fibromyalgia and endometriosis as examples.

Opprørende om alvorlige sykdommer
google translation Outrageous about serious illnesses

I can accept that doctors make mistakes - it's human - or that they are not updated. No one can be up to date on all diseases, but I find it hard to accept an arrogance that explains everything you do not understand "as something that has occurred in the patient's head."

How difficult is it to say: "I do not know why you're so ill, but I believe in you"? Why is it so difficult to accept patient's expertise on their own bodies?

...

If ME patients are skeptical of further research on mental causes for ME, it is because they are far better updated on research than large parts of Norway's physicians. It is not where you will find the answers to what Ron Davis, who in his time led the Human Genome project, calls "the last major disease we know nothing about".

 

Are you an ME patient living in Norway? Have you ever experienced that health care personell have recommended alternative treatments for ME? The Norwegian ME Association would like to hear about it.

Når profesjonelle aktører utnytter et vakuum
google translation: When professional parties takes advantage of a vacuum

From today, we ask everyone who has experienced recommended alternative treatment to recover from a public body (Nav, hospital, permanent doctor, etc.) report to the ME association using the contact form on the right.

The same applies to anyone who has heard recommendations from professional actors in meetings or at conferences, or have heard they speak warmly about using alternative treatment to get well. We can not have such actors in our health system (which is based on science and facts) when treating people. Concerns will be treated confidentially and anonymously, but the stories that appear will be handed over to the ministry.

 

I just filled it out. The neurologist I was sent to for a second opinion this spring, after prescribing migraine meds to try against headache attaches, ended the session by suggesting I try LP.

The worst part is that she really had no idea what it was, she was pretty shocked when I explained what it consists of. And still she decided to recommend it, to a very ill young woman on benefits, to try an alternative treatment that costs thousands of pounds. It’s so incredibly irresponsible it makes me angry just thinking about it.

 

Remember Karina Hansen from Unrest? The Danish young ME-patient that was taken from her home and her family's care and institutionalised for years without her family being allowed to see her. There was 1 doctor who fought for her and he was portrayed as well in Unrest.

He is called Stig Gerdes and has now reported Søren Brostrøm, the director of Danish Health Authority for, against better judgement, promoting functional disorders and HPV vaccines.

The report is sent to senior doctor Charlotte Hjort, chief of Danish Patient Safety Authority and publicly announced on Facebook. He also requests that those who have experienced unworthy treatments in Danish health care should send a complaint to the Danish Patient Safety Authority.

Regarding functional disorders he says among other (my translation):

It surprises me that Søren Brostrøm, as board member of WHO, doesn't follow WHO's recommendations. WHO recognises Myalgic Encephalomyelitis as a somatic disease, with diagnostic code G93.3. WHO hasn't recognised Functional Disorders, thus Søren Brostrøm can't include ME under Functional Disorders.

The full report is attached. Language: Danish

 

This is a considerable problem in the Danish ME/CFS debate.

An extraordinary amount of Danish ME/CFS patients are attributing their illness to vaccinations, and are very vocal anti-vaxxers.

At the same time, the few doctors / scientists who speak out in public mostly all seem to be against the HPV vaccination.

 

The Danes are reviewing HPV, more particularly Gardisil as there were some idiosyncrasies in Merck' s definition and handling of adverse reactions.

 

Yes, I'd prefer it too if those issues were kept separated. It seems the HPV vaccine debate has been particularly high in Denmark. Not sure of the reason.

 

There seem to have been an unexpected number of severe adverse reactions noted in Denmark after Gardisil was initially rolled out. and someone has done a bit of digging as the reporting for these seems to have been designed to screen things out which may have been attributable.
I don' t know much more than this. Some parents on forums are very interested as it squares with their own experiences.

 

Kavlifondet has decided to keep supporting ME-research at Haukeland, with an additional 4.72 mNOK, around $590k.

KAVLIFONDET GIR 4,7 MILLIONER KRONER TIL ME-FORSKNING VED HAUKELAND UNIVERSITETSSYKEHUS

Google Translate


ETA: Link and Google translate

 

This was wonderful news
Kavlifondet has been a crucial financial supporter to Øystein Fluge and Olav Mella's research team over years.

You can give them a thumbs up and a thank you here:



https://twitter.com/user/status/1040493808893485056

 

They have an English version of the article as well!
https://kavlifondet.no/en/2018/09/p...me-research-at-haukeland-university-hospital/

 

The Norwegian ME Association - Rogaland County - is about to launch their project on adapted education for children and adolescents with ME.

The result is a "tool box" consisting of a lecture with PowerPoint presentation, four animation films and a booklet which will be presented at schools with pupils with ME.

The main themes are

• Information about ME
• Cognitive challenges
• Legal framework for adapted education
• How to make a plan for the education
• The ME patients and their relationship to fellow classmates and teachers

Further presentation:
Tilpasset undervisning for ME-syke - En god vei til sosial inkludering og bedret livskvalitet
google translation Adapted Education for ME Patients

 

Not about ME but parallels are not hard to find.

The article is a highly entertaining account of assorted “medical opinion wars” throughout the last 200 years. Less entertaining and more disconcerting: many of our current debates – the diet wars, (anti-)vaccination, even BPS versus biomedical – appear to have their roots there.

But at least I now understand the appeal of homeopathy. Back then, a few drops of water that may or may not have contained a “memory” of some molecule or other would have been infinitely preferable to treatment by high-dose mercury!

Kampen mellem alternative behandlere og lægevidenskaben begyndte allerede i 1800-tallet (Danish)
https://videnskab.dk/naturvidenskab...-og-laegevidenskaben-begyndte-allerede-i-1800
The struggle between alternative therapists and medical science began in the 19th century (Google Translate)
https://translate.google.com/translate?sl=da&tl=en&js=y&prev=_t&hl=en&ie=UTF-8&u=https://videnskab.dk/naturvidenskab/kampen-mellem-alternative-behandlere-og-laegevidenskaben-begyndte-allerede-i-1800&edit-text=

The bits about the supposed connection between morals and health are particularly interesting. You can expect good health if you live your life correctly with the correct food, the correct exercise and the correct morals. Illness, therefore, is a moral failing. Now, if you substitute “correct belief systems” for “correct morals” things start to sound awfully familiar.

And check out the advertisement for the Skodsborg Badesanatorium for the “half-healthy” and those with "nervous disorders" and other MUS candidates. No idea what some of the weird-sounding treatments offered actually are but I'm somewhat suspicious that after an “electric bath” one might end up rather lass than half healthy
That last bit is an illustration in the Danish article, sadly it doesn't show in the Google translation.
Edit: typo

 

Here is a "trailer" from one of the animations that have been made for this project.
It is in Norwegian, but here is a translation of what is being said.

This looks like a normal class room situation. But for this pupil, the experience is completely different. You see, ME patients have a sensitivity for sensory impressions. It affects the learning capacity. Therefore it’s important to accommodate for quiet surroundings.

Have you ever noticed that the pupil seems to be far away? That’s probably brain fog. Brain fog is a symptom which makes it very difficult to think and use the brain in a normal way.

https://www.youtube.com/watch?v=VhVZXGAgfxE

 

correct name
the Norwegian National Advisory Unit on CFS/ME (Nasjonal kompetansetjeneste for CFS/ME)

NOT
Norwegian national center of excellence for CFS/ME or the Norwegian National Competence Services for CFS/ME

 

I'm sorry. I used this page https://www.dinordbok.no/norsk-engelsk/?q=kompetansesenter
But there might be a difference between "kompetansesenter" and "kompetansetjeneste"?
Thanks for the correction.

 

Article doesn't say much more than how nice it'll be for MUS patients on the island of Fyn to finally have their own Center to go to where they'll be understood. All very nice and caring but there's no indication whatsoever that anyone at the new center might take the biomedical side of things seriously. There's also mention of a similar center in Aarhus, stomping ground of you know who. Hmm. Suspect, highly suspect...

Nyt center for uforklarlige sygdomme: Nu er der nogen, der tager dem alvorligt - Odense Universitetshospital har fået penge til at lave et center, der kan behandle 275 patienter om året.
https://www.dr.dk/nyheder/regionale...domme-nu-er-der-nogen-der-tager-dem-alvorligt

New Center for Inexplicable Diseases: Now, someone is taking them seriously - Odense University Hospital has got the money to make a center that can handle 275 patients a year.
https://translate.google.com/transl...-der-nogen-der-tager-dem-alvorligt&edit-text=

For entertainment, check out the Google Translate take on this link at the end of the article:

[Original] Læs også: Av, av, av: Nu skal læger gøre noget ved skraldespands-diagnoser
[Google] Read also: Off, off, off: Doctors now need to do something about binoculars diagnoses (this should read something like "Ouch, ouch, ouch: Now doctors are to do something about wastebasket diagnoses").

Maybe Google is trying to tell us, in code, that doctors not prepared to use metaphorical binoculars to have a really good look at a patient's symptoms should take themselves off, off, off somewhere else, away from medicine?

 

They are really mobilising in Scandinavia, aren't they?
Did you see this in the Journal for the Swedish Medical Association?
At least the author is honest on what this really is about..

Funktionella somatiska symtom kräver biopsykosocial kompetens
google translation: Functional somatic symptoms require biopsychosocial competence

Many doctors recognize the situation in which a serious illness as a cause of the patient's symptoms has been ruled out, but it is still difficult to meet the patient's expectations of explanation or improvement.