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General ME-related news from Scandinavia

Kalliope

Senior Member
Messages
367
Location
Norway
Norwegian Institute of Public Health has published a trial on the HPV-vaccination and ME. Prof. Vegard Bruun Wyller is one of the researchers.

Folkehelseinstituttet: Fant ingen økt risiko for kronisk utmattelsessyndrom etter HPV-vaksinasjon
Google translation: No increased risk of CFS after HPV vaccination
Link to the study: HPV vaccination and risk of chronic fatigue syndrome/myalgic encephalomyelitis: A nationwide register-based study from Norway


Results of the study

  • Girls who have received one or more doses of HPV vaccine do not have a greater risk of chronic fatigue syndrome (CFS / ME) than girls who have not received such a vaccine.

  • The study also shows that CFS / ME in Norway has increased in the period 2009-2014. The data for this part of the study are taken from more than 800,000 children and adolescents aged 10-17 years. About two thirds (67%) of those diagnosed are girls. However, the increase is similar in both sexes, although diagnosis occurs more frequently in girls. The reason for the increase is unknown.
On criteria:
CFS/ME was defined as an in-or outpatient hospital visit with a discharge diagnosis coded as G93.3 in the NPR. The national guidelines on CFS/ME recommend using ICD-10 code G93.3 for CFS/ME, regardless of suspected cause, and that children and adolescents are diagnosed by a paediatrician in the specialized health care. Children and adolescents are usually diagnosed according to guidelines from the Norwegian Paediatric Association, which refer both to the Fukuda criteria and to a broader case definition, requiring 3 months of unexplained, disabling, chronic fatigue. A recent Norwegian study found that 73% of adolescents diagnosed with CFS/ME, were diagnosed according to the Fukuda criteria.
Article in a Danish newspaper about a senior doctor who believes this trial can't prove there are no connections between HPV-vaccine and ME.

Politiken: Overlæge afviser frikendelse av hpv-bivirkninger trods nyt studie
Google translation: Doctor rejects the clearing of HPV side effects despite new study

Don't really know what to make of this myself, but note that ME is debated in Danish media without doctors from Århus claiming it to be a somatoform disorder (albeit a "controversial disorder"). So guess that's something..
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
The study also shows that CFS / ME in Norway has increased in the period 2009-2014. The data for this part of the study are taken from more than 800,000 children and adolescents aged 10-17 years.
.

Do you happen to know the percentage increase during that period? Or perhaps have annual data?

We recently learned of a large increase in ME diagnosis in Canada. It would be curious if similar was occurring in Norway.
 

Kalliope

Senior Member
Messages
367
Location
Norway
Do you happen to know the percentage increase during that period? Or perhaps have annual data?

We recently learned of a large increase in ME diagnosis in Canada. It would be curious if similar was occurring in Norway.
No, have no numbers unfortunately. There would anyway be some weakness regarding usage of different criteria and assessment before an ME-diagnosis. But would have been interesting to know the numbers diagnosed nevertheless. There is consensus of an increase, however.
 

mango

Senior Member
Messages
905
Does anyone know if people get 'prescribed ' GET in Sweden? Is it a recommended treatment?
There are, so far, no national guidelines for ME/CFS treatment in Sweden. But yes, some pwme do get 'prescribed' GET.

I was forced to do it many years ago (under threat of losing my only income/sickness benefit). Made me much much worse, went from moderate to severe/very severe, and it caused permanent harm.
 

mango

Senior Member
Messages
905
A women's magazine had an article today about a mother with a child with ME. [...] for some reason I couldn't google translate it from Norwegian to English
Linking Google Translate doesn't work for me either. Here's a copy of the (unedited) translated text:

My life
11 hours ago

- I went for walks in the evening and cried

When Stine's daughter was at the sickest, she did not get on the go. The mother juggled a job with sole responsibility for her daughter, and became increasingly tired.

Cecilie Skjerdal Journalist

- For a long period she did not tolerate daylight. We had the blinds cured for about two years.

Eight years old, Stine Aasheim's daughter became ill. Still she was too bad to go to school or play with friends. It hurt to be taken in. She was so dizzy that she needed support when she walked.

Occasionally, she had no power to say more than two words after each other. Movements in the field of vision, sounds or odors could cause intense headaches and make the symptoms worse.

On better days, Stine drove her to school, but often had to pick her up before the day was over. At her mother's office she slept. After three such years they were worn out, and both broke into crying at the doctor's office.

- The doctor responded by saying that we had to go on mood-regulating medicine for the rest of our lives. But we were not depressed. The girl was sick and we did not understand what it was, says Stine.

After replacing a GP, investigation was initiated. Pediatrician and neurologist concluded with Myalgic Encephalopathy (ME). Energiske Stine, who had been a salesperson, was running amateur theater and arranged operaball, who was the prime engine for projects both at work and private, put everything on hold. Now she had to focus on the most important thing: the daughter and the job.

READ MORE: Monica had three jobs - was burnt out and developed ME

- Two times she lay on the floor when I got home

But Stine had a constant bad conscience. Absence from work had consequences for colleagues. And when she was in the office, she thought about the girl who was home alone.

"Twice she lay on the floor when I got home, unable to get up myself.

Stine did not know what aids offered and did not have the power to figure it out. All the energy was going to make everyday life hang out.

After long days of concern, she walked and cried. She read everything she came across about ME. The research spread - doctors disagreed and there was no treatment.

READ ALSO: Kjersti (64) has three ME sick children: - Several times we have been afraid to lose them

Gained a network of ME moms
She acquired a network of ME moms who could provide support and help. Everyone was tired. Frustrated over an aids that are skeptical of the diagnosis. Economically exposed. Many had high education, but their career was put on hold. Life was on hold. For such is life with a ME-sick child.

Everyday is characterized by grief over all that could have been, and struggle against a system that misters them. It's an eternal "fingers-crossed" project: anniversaries are planned, but when the day comes, the child is in the dark in the room. Holidays are booked in a hopeful moment, but must be canceled.
- Occasionally we can visit. If the shape gets bad, it's easier to go home than suddenly pulling out guests you've invited.

READ ALSO: - I fear that my daughter will never be well again

SMIL: On one side wall, Stine painted a smiling face. - I had plans to paint the wall. So far I came, she laughs. "But it reminds me of keeping my mood up! Private

Started blogging about everyday life with ME sick children
Together with other ME mothers, Stine created a blog. She needed to express herself and would hope and support ME children and their parents.

"I wish you scrub and sunburn. Examination stress and love care. Not because I want something bad for you, but because of all my heart you want to experience everything that youngsters are going to experience. My beloved kid. I love you higher than heaven and from here to eternity. I hate ME, "wrote Stine on the blog. You can read the entire text here!

Today the daughter is 18 years old. In the last year she has seen some improvement. But ten years of sick children, she has stuck in Stine: now she is ill-reported. Fortunately, during all these years, she has learned to live at the moment and find pleasure in the little things: walks with the dog, beautiful scenery, a few minutes at a coffee shop. She tries to meet girlfriends a couple of times a month.

- I make small pockets. It's great to talk to someone from what I call "the fresh world," she laughs.
Stine says humor is what keeps her up. Gallows Humor.
- That's the way I really am, I've always used humor. I make a humorous twist on something that is bad and sad, then I move the focus a bit. It is so lovely to smile!

She feels faith in better time
 
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mango

Senior Member
Messages
905
New opinion piece, from Denmark (behind paywall):

Politiken.dk: Jeg har været fejlbehandlet i 20 år. Hvorfor vil Sundhedsstyrelsen ikke anerkende, at ME ikke er en psykiatrisk lidelse? ("I've been wrongly treated for 20 years. Why does the National Board of Health not want to acknowledge that ME is not a psychiatric disorder?")
http://politiken.dk/debat/kroniken/art6046031/Jeg-har-været-fejlbehandlet-i-20-år.-Hvorfor-vil-Sundhedsstyrelsen-ikke-anerkende-at-ME-ikke-er-en-psykiatrisk-lidelse1

Google translate, English:
https://translate.google.se/translate?sl=da&tl=en&js=y&prev=_t&hl=sv&ie=UTF-8&u=http://politiken.dk/debat/kroniken/art6046031/Jeg-har-v%C3%A6ret-fejlbehandlet-i-20-%C3%A5r.-Hvorfor-vil-Sundhedsstyrelsen-ikke-anerkende-at-ME-ikke-er-en-psykiatrisk-lidelse1&edit-text=
 
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Kalliope

Senior Member
Messages
367
Location
Norway
A Norwegian news site on research have covered the PACE-debate

Hard kritikk av stor ME-studie

Hard criticism of major ME study

The researchers behind the strongly criticized PACE study will not participate in a scientific debate on the matter. It is disappointing, writes the editor of the Journal of Health Psychology, which dedicated a whole number to the debate around the study.

"They behaved as if they should have a kind of right not to respond to criticism, according to editor David F. Marks.
 

Kalliope

Senior Member
Messages
367
Location
Norway
Prime minister and health minister in Norway want a standard process for ME-patients on assessment and care. Provided patients and patient organisations are invited to contribute to developing this standard process, this might be very promising news :)

VG: Åpner valgkampen: Høyre lover pakkeforløp for ME-pasienter
Google translate: Opens election campaign. Conservative party promise package for ME-patients

- If you have a manual for how to do this, how to diagnose - for ME, the diagnosis question is discussed - what kind of offer should be given, what to do if the offer is not working.To start all these things, it is to have a structured course, "says Solberg to VG.
 

Dolphin

Senior Member
Messages
17,567
(This is from July)
https://translate.google.com/transl...rskningsjubel-tarmprosjekt-me-syke/&sandbox=1


RESEARCH APPEALS FOR INTESTINAL CARE FOR ME-SICK
July 11, 2017 Updated: 14:48 / 19 July, 2017 PER-CHRISTIAN JOHANSEN, COMMUNICATIONS ADVISER
A new major study aimed at CFS / ME sick (chronic fatigue syndrome) is now being conducted in collaboration with the medical and physical medical department UNN Harstad.

On the basis of input from more than 700 ME patients, relatives and therapists, the Research Council has granted NOK 30 million to four national studies. In total, there were 19 applicants for the new research project.

- ME is characterized by rapid fatigue in the muscles and central nervous system. The reason is unknown, and there is also disagreement about how to approach the disease treatmentally. We believe ME may be caused by a disorder in the natural intestinal flora that has been shown to have a different composition compared to healthy. Increased markers in the immune system have been found that may indicate a leak of bacterial products from the intestine. This leak can again be due to an intestinal flora in imbalance, says LIS physician Peter Holger Johnsen at the medical department UNN Harstad.

- From studies on other diseases, it is known that an intestinal flora in imbalance can be normalized by transferring intestinal bacteria from a carefully selected fresh donor to the intestine of the sick person. This is what is called fecal transplant. At the medical department UNN Harstad we have recently completed a study on the treatment of irritable bowel syndrome with fecal transplantation. Through this work we learned that the same treatment principle could also work with CSF / ME, says Johnsen, who is the initiator of the project and fellow of the study on irritable bowel syndrome.

Recruitment of participants
Bowel flora is probably related to many diseases, and can also be a cause of CFS / ME development. Patients themselves have shown interest in the subject, and therefore the research project is among the electors from the Research Council.

"There will be a blinded placebostudie. That is, neither the donor nor the patient knows who gets treatment with what. Half will receive treatment with feces from a healthy donor, while the other half gets placebo, Johnsen adds.

Treatment and inclusion in the study will take place at UNN Harstad, where both the physical and medical department will be involved.

- The timeline of the project has not been fully clarified, but we aim to use the following year for mapping and recruiting a total of 74 people with chronic fatigue syndrome to participate in the study. Already the interest is great. Start-up on the treatment itself will be calculated until August next year, ending December 2019, says Peter Holger Johnsen.

Interdisciplinary group
CSF / ME is a complex disease and the type of treatment attempts has never been carefully studied in previous studies.Therefore, the project team consists of physicians from three different specialties, as well as researchers with a lot of experience on fecal transplant as a treatment.

Chief Rasmus Goll at gastromedisin UNN Tromsø is a project leader in the study. Per Christian Valle is a senior physiotherapist in Harstad. Both were supervisors of Peter Holger Johnsen in the study of irritable bowel, and continue as in the ME study. In the group there is also a section officer and fellow doctor at UNN Harstad Physical Education, Guri Heiberg, and general practitioner Frank Hilpüsch. Once diagnosed, the general practitioners will follow up the patients. Hilpüsch also participated in the irritable bowel study.

- The application to the Research Council was motivated by the project group to demonstrate its ability to carry out irritable bowel studies. At the same time we wanted an interdisciplinary approach so that we were highlighted several aspects of the disease. This will ensure that we take care of the participants in the study as well as possible. In addition, it was enough for the application to conclude a cooperation agreement with an internationally recognized research community from the USA, concludes Peter Holger Johnsen.

Of the total of 30 million granted from the Research Council to the four studies related to CFS / ME, five million dedicated projects are in Harstad. The three other studies are affiliated with the University of Oslo, the University of Bergen and SINTEF.Here you can read more about the total project and the background for this .

Participation and information
Information, opportunity for participation and updating on the progress of the study find interested in our new facebook page .

READ ALSO: How to work with CFS / ME at UNN .
 

Kalliope

Senior Member
Messages
367
Location
Norway

Kalliope

Senior Member
Messages
367
Location
Norway
Karina Hansen's doctor, who lost his authorisation after decreasing her dangerously highly dosed medication, goes to court.

He says:
"What they say is that you should not treat this girl unless you work in a particular department in Denmark.So where is patient safety and the patient's right to choose for themselves?What will happen to Karina if this decision stands by?Will there ever be a doctor who dares to act according to their conscience, or will they be fleeing from the patient in fear of the consequences?Does Karina have the right to choose less medicine and fewer side effects?She has been locked in for 3 years.Is she going to be locked in for 3 more years?It is well known that the type of psychiatric drug she receives may have significant side effects, so why should she be contained for years without the possibility of getting out of the medical strait jacket? "

Frederica Avisen: Stig Gerdes: Min samvittighed er mere værd end titler
Google translation: Stig Gerdes: My conscience is worth more than titles