News from Scandinavia

So it only works for illnesses where there is no effective treatment.
A strange cure that stops working on illnesses once the cause is known and a treatment available.
It doesn't cure stomach ulcers though it probably did before they found the H.Pylori cause and it literally ceased to be an effective treatment overnight. Probably the same with cancer and a host of other illnesses.
The great enemy of DNRS.........Science!

 

"Highly specialized"? Their woo could not be more generic and superficial. And is always the same thing, there is no learning involved.

"A need for mobilization". They don't even understand the most basic concepts and they call themselves specialists. This stuff is destroying the entire concept of expertise. Experts are never expected to know everything but they sure as hell are expected not to make stuff up.

 

The Danish newspaper B.T. has had a few articles about ME lately.

Today they have asked some really good and direct questions to the Danish Health Authority about how they can define ME as a functional disorder, treat the disease with GET and still claim to base this on the latest science. The newspaper is referring to the new NICE guideline in their questions. I hope the google translation is readable.

B.T. Sundhedsstyrelsen afviser patienters opplevelse: 'Det er simpelthen ikke rigtigt'
google translation: The Danish Health Authority rejects patients' experience: 'It's simply not right'

quote:
But the latest knowledge and research in the field are the new NICE guidelines from 2021. You have said several times that you will not adjust your recommendations based on them - and at the same time you say that the health professionals are precisely obliged to follow them latest knowledge?

"The research in the area, on which the guidelines are also based, is not necessarily of the highest quality. It is not at all uncommon for researchers and health professionals to have professional discussions to develop the field. At the same time, we must help the patients. We start from the best knowledge we have.

But what is the best knowledge if it is not the latest research in the field?

"It is the total knowledge we have and what is in relation to the Cochrane review. It is important to make it very clear that you must start from professional knowledge, but you must also always listen to the patient's experiences and start from what the patient experiences as benefiting.'

B.T. has spoken to more than 100 ME patients and several professionals. They unanimously say that the National Board of Health's recommendations worsen the patient's condition?

"It's simply not right. It is simply setting up a completely false premise. For several years, we have been very focused on helping this group of patients better, and have long pointed to a great need for a strengthened national focus. When you talk about graduated training, it is not the case that you have to have a training program. It is about gradually helping the individual to achieve a better functional level with adapted increased activity.

 

Damn, this is almost a comedy sketch.

"We must listen to the patients"
"The patients all say this makes them worse"
"Well, that's just wrong"
"They literally ALL say it makes them wrong"
"Well I guess they must all be wrong, then"
"But how can you say you listen to patients then immediately dismiss what they report"
"Well, we have good experience listening to patients and this experience tells us it's working"
"But the patients say the opposite"
"Yes but our experience says otherwise"
"..."
"We're great at listening to patients, aren't we?"

And that last response is just muddy nonsense. They have nothing, no evidence for their thing, all the evidence is against, and they couldn't care less but still call it evidence-based. And this shows why the Cochrane review is so important to preserve. Evidence be damned. Patients be damned, pretty much literally.

Only in politics, business and medicine can this level of incompetence even exist, let alone thrive. This whole system needs a top-to-bottom reform, it can't even pretend to respect patients as actual people.

 

Interesting stuff, thanks for posting. I had some trouble with google translate but got through in the end.

 

@Caroline Struthers more evidence that the zombie review is still harming patients.

 

Article from Agnes Arpi about the situation in region Västerbotten.

Google translated:

”ME patients' hopes were dashed

In 2017, the need for a specialist clinic for ME sufferers was identified in Västerbotten. In 2022 there is one, but the intermingling of roles and profit interests is questioned and many are in despair.”

I am sorry but I couldn”t get the link to cooperate with Google translate:
https://www.altinget.se/artikel/me-patienternas-hopp-blev-till-aska

 

Always confusing to me whether Finland counts as Scandinavia.


https://twitter.com/user/status/1575154651082752001

 

Bendt went from chief physician to failed patient: 'It's some damned bullshit'
https://www.bt.dk/samfund/bendt-gik-fra-overlaege-til-svigtet-patient-det-er-noget-forbandet-svineri

In Denmark, the National Board of Health recommends graduated exercise and cognitive behavioral therapy as part of the treatment for patients with ME/CFS at centers for functional disorders based on a collection of scientific articles and studies , they state.

But according to Bendt Nielsen, a large number of patients BT has been in contact with in a longer series of articles, health professor , politicians and international research , the treatment in the Danish healthcare system based on the recommendations of the Danish Health Authority has only worsened their condition.

"I followed the physiotherapists' advice to exercise vigorously, which led to a very serious worsening of my symptoms. Since then, I've mostly only been bedridden and get a lot of pain when I try to get up or exert myself,' he says.
...
He finds that the majority of the country's doctors, who are responsible for both the diagnosis and treatment of ME/CFS, are not at all prepared to deal with the disease.

"Every doctor and neurologist must know the disease. But it is difficult when knowledge about ME/CFS has been removed from the textbooks, and the disease is hidden in the system in Denmark,' he says.

Today he himself is bedridden and has given up hope of his own recovery.

But he hopes that his professional knowledge and advocacy can help make a difference for future patients and get Danish doctors to live up to international standards and believe that the disease is physical - and therefore not treat patients with either cognitive behavioral therapy or overexertion.

Bendt Nielsen emphasizes the latter as being directly irreparably harmful to the patient. Just like it was for him.

"It's some damned bullshit, there's no doubt about that," he concludes.​

Unfortunately, those are the "international standards" as far as the medical profession is concerned. I see a lot of that framing, of being "behind the rest of the world", when really no one is either behind or ahead, it's all, well, "some damned bullshit" everywhere is about right.

 

What's the deal with Denmark? It's really a shame that they're so stubborn about ME being a real illness. Heck, even the UK seems better. At least in theory, they have solid guidelines. The CDC's website straight out says ME/CFS is a biological condition. But Denmark is really stuck with all this bad science.

 

I have been listening to a podcast episode with a doctor who makes a number of strange claims about ME (and other things). It is in Swedish but I have transcribed some parts and hope that google can help you translate into English.

4health - 314: Dr Cecilia Tibell - ME/CFS. Hur blir man frisk från kronisk utmattning?

”When I listen, there's parts that makes me bounce. Things that trigger my warning system. Something that I react to both based on my education, professional experience and what I learned by reading about and living with ME. It is these red flags that the rest of this text will be about.”

Link to google translated version:
https://mitteremitage-wordpress-com..._sl=sv&_x_tr_tl=en&_x_tr_hl=sv&_x_tr_pto=wapp

I will follow up some of her claims about ”braintraining” (she recommends DNRS, Gupta and ANS to her ME patients and say there is good studies behind) in several blogposts this week.

 

(Not ME specific but very much relevant to all disabled people in Sweden, including pwME.)

Sweden's new chairman of the Committee on Justice wants to remove the law against discrimination.

(He is representing a political party with fascist and Nazi history, and they feel they are often being discriminated against on the basis of their political views. They have discussed expanding the law to include political views as one of the protected groups, but they would prefer to remove the law altogether.)

Absolutely disgusting and completely appalling

Discrimination against pwME is a massive problem, we really need this law to stay as it is (or for it to be strengthened!)

 

(Sharing only as info, not meant to be a recommendation.)

Phoenixmottagningen Järna in Sweden (formerly known as Vidarkliniken) is offering a talk on ME from an anthroposophic perspective on Friday 21 October.

Code:

https://www.facebook.com/events/s/temakvall-om-mecfs/339180281738950/

 

I have been there. Twice. A beautiful place, but they were completely clueless about ME even though they claimed to have something to offer this patient group. It was several years ago though, so hopefully they are more up to date now. Anthroposofic doctors have a medical degree as well. Have to admit I didn't keep up with my eurythmics exercises..

ETA: The doctor I had asked if I had tried to push through ME
ETA: And they got annoyed when I was too sick to join different therapies and activities and had to cancel. Also they tried to encourage me to eat together with the other patients instead of in my room, but the dining room was far too noisy.

 

New article about Swedish former professional tennis player Robin Söderling, and his book (memoir?) "Sluten" that is being released in Sweden today.

Epstein-Barr virus infection and ME/CFS were mentioned in several articles during the first few years of him being ill. I don't know if ME is mentioned in the book, or if he was ever diagnosed with ME. In this article there's a quote saying that he's hoping that his story will be helpful to people suffering from "exhaustion disorder and panic attacks".

"- It's a pity that it's called mental illness because for me it was so very physical. My body was in rebellion, it was completely exhausted. It becomes like a taboo. It's something I've thought about in retrospect."

Robin Söderling: ”Jag vill att ni söver mig”
https://www.aftonbladet.se/sportbla...rling-slapper-boken-sluten-berattar-om-kampen

Google Translate, English ("Robin Söderling: I want you to sedate me")

(Edited to correct spelling mistakes.)

 

Jonas Bergquist was on the Swedish breakfast show TV4 Nyhetsmorgon this morning, together with a young person with ME and her mother.

Smilla drabbades av sjukdomen ME: ”Allt roligt försvann”, 2 min 31 sek
Smilla Thelander var en aktiv tjej men drabbades av sjukdomen ME när hon var 13 år. Och det började med något så litet som en öroninflammation.
https://www.tv4play.se/program/nyhetsmorgon/smilla-drabbades-av-sjukdomen-me-allt-roligt-försvann/13794926?offset=0

Så är det att leva med ME – ”Började med en öroninflammation”, 10 min 53 sek
https://www.tv4play.se/program/nyhe...d-me-började-med-en-öroninflammation/13794929