News from Scandinavia

Lilas said:
" The Dynamic Neural Retraining System™ is a drug-free, self-directed program that uses the principles of neuroplasticity to help reverse limbic system impairment in the brain, and to regulate a maladapted stress response involved with many chronic illnesses such as Long Covid, Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Chronic Lyme Disease, Food Sensitivities, Anxiety, Chronic Pain, Postural Orthostatic Tachycardia Syndrome and many other conditions."
https://retrainingthebrain.com/

No credible evidence of causation but, as usual, presented as such. The mirage of desire for a panacea (sigh!)
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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.
 
Kalliope said:
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'
Click to expand...

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

The Danish Health Authority rejects patients' experience: 'It's simply not right'

Disabled, depressed and failed in the healthcare system - patients with the disease ME have come forward in a large number of articles on bt.dk, but according to them, no one listens.

Marie Louise Ilsøe Gustavussen lies in her bed 24 hours a day. She consumes blended food and has lost her youth to the disease.

21-year-old Nanna Viffeldt Smistrup has a good day if she can drink a coffee with her mother - but then she also has to lie down for the rest of the day.

Before Pia Krabbe Larsson got ME, she was a home nurse and ran around with her two boys. Today she can walk a few steps and needs seven rests a day.

ME has taken the joys of life from Eline Klitgaard. The disease has forced her into solitude, where she needs help for everything.

Both Marie Louise Ilsøe Gustavussen, Nanna Viffeldt Smistrup, Pia Krabbe Larsson, Eline Klitgaard and approximately 100 ME patients and relatives, who B.T. have been in contact with, have all been made worse by being treated in the Danish healthcare system based on the recommendations of the Danish Health Authority.

They have been diagnosed with ME, which is a serious, chronic disease that affects the nervous, immune and hormonal systems.

In Denmark, the National Board of Health recommends graduated training 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.

A treatment that has bedridden a large number of patients.

"It is difficult to maintain hope when health authorities in Denmark stubbornly maintain that ME is a functional disorder, where you can think and train healthy. It is a mystery to me that they refuse to listen to the patients, who, after all, live with the disease every single day,' said Marie Louise Gustavussen to B.T. last Friday.

In response to a previous criticism, the Danish Health Authority has stated to B.T. that they base a large part of their knowledge base for the current recommendations on a Cochrane review that recommends graded training and cognitive behavioral therapy.

But B.T. have examined the Cochrane review. They themselves have stated that their studies are based on outdated research - and may be a danger to the patient, which is why it must be completely reassessed.

Exactly what patients and professionals have been clamoring for for years.

In 2021, the British National Institute of Health's new research in the area was published in a NICE report, which points to the same thing: the Danish recommendations for the treatment of ME can make the patient worse.

B.T. The deputy director of the Danish Health Authority, Helena Probst, has leveled the criticism.

How much do you base your knowledge base for the current recommendations on the Cochrane review?

"Reviews and recommendations will have to be continuously updated when new information becomes available. This is an area where, unfortunately, incomplete knowledge and focus is still lacking. Over recent years, we have set up specialized services in all regions - and their task is both to build knowledge, follow the latest research in the field and take care of seriously ill patients.'

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.

There are just too many examples of patients who have gotten worse after being treated based on your recommendations. Several patients were admitted bedridden after a trip in the Danish healthcare system, because they were pressured into, for example, graduated training?

"I fully acknowledge that there are some patients who have been met with stigmatization and mistrust, and there are patients we have not helped well enough at all. Unfortunately, there is no perfect treatment today, but it is important for me to emphasize that many people can actually get much better, and some can recover completely. We have a great obligation to make it better.'

You also say that there are specialized offers, but it is not specialized for ME patients, is it?

"Yes, they (centres for functional disorders, ed.) see patients with both chronic fatigue, ME and functional disorders."

The criticism is precisely that ME is not separated from functional disorders in Denmark - and that the same treatment that is for chronic fatigue, for example, worsens ME patients?

"We must do everything to help sick patients, and we have built a completely unique framework in Denmark to ensure continuous development in this area. We have a very good professional, organizational and research foundation, and we must develop this in dialogue with professionals, domestic researchers and the patients.'

But ME patients are still not separated from functional disorders, as patients, professionals, neighboring countries and a unanimous parliament already demanded in 2019?

"Yes, there are different diagnosis codes, but no, the treatment does not differ."
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Kalliope said:
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.'
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@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
 
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 :grumpy::wtf::arghh::eek::cry::mad:

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

:wtf::wtf::wtf:
 
(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/
 
mango said:
(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/
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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 :confused:
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")
Auto-translate said:
Robin Söderling: "I want you to sedate me"

Robin Söderling talks about his illness in a new book

July 2011. The world tennis star lies in bed under a duvet at his girlfriend Jenni's house. He screams, cries and hyperventilates every now and then. Panic grips his body and mind, he has trouble breathing and doesn't notice when he claws Jenni's arm convulsively.

Sleepless nights follow one another, a creature with its face hidden in the hood of the adult kicksuit he received for Christmas wanders unseen around the capital.

He wants to escape. Jenni takes him to the west coast, to her parents, but they only have time to stay a short while before Robin asks her to take him to the hospital, where he is referred to the psychiatric ward.

Seven days after his victory against David Ferrer in the Båstad final on 17 July 2011, a week after his last match ball as a professional player, Robin Söderling is in the psychiatric emergency ward at the Sahlgrenska hospital in Gothenburg.

"Everything is wrong, it's like having a tumble dryer inside your body. Or like an old-fashioned kettle, when the water sizzles and the valve squeaks, or if you pour water into a balloon, so that the balloon expands until it's close to bursting from the inside. That's what it feels like," Robin explained.

And so to the point.

"I want you to sedate me," Robin said. [...]
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How are you now?

- In many ways I feel better now than before it happened. But I'm probably a bit more sensitive to stress than before. Although sometimes I think I might be more alert to the signals. But I'm living a different life, I'm thinking ahead more and being more vigilant and taking the time to recover.
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(Edited to correct spelling mistakes.)
 
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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
Auto-translate said:
Smilla came down with ME: "All the fun disappeared", 2 min 31 sec
Smilla Thelander was an active girl but was struck by ME when she was 13. And it started with something as small as an ear infection.
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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
Auto-translate said:
What it's like to live with ME - "Started with an ear infection", 10 min 53 sec
When Smilla Thelander was 13, she was diagnosed with ME. She went from being an active and social girl to not being able to cope with anything. But it took time for her doctors to listen. Smilla and her mother Linda Svensson are our guests today. Doctor Jonas Bergquist, director of the ME/CFS Research Centre, talks about research into ME.
Click to expand...
 
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