Norway: ongoing thread for news

Purple

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I just thought I would start a thread on which we could post all the media coverage and other relevant information and developments on ME/CFS and the Rituximab trials and everything relevant to ME/CFS and fundraising initiatives from Norway. There seems so much going on currently! It would be nice to have it all consolidated in one place.


To translate - either copy the link address to Google Translate or, if you use Chrome, you will be asked if you would like Norwegian to be automatically translated.

Any Norwegian speakers - feel free to weight in and help with translating if Google Translate and/or letting us know contents of videos.
 

Purple

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This is a blog post on http://debortgjemte.com/ from 6 December, after the funding for the Rituximab trial was not allocated.

http://debortgjemte.com/2012/12/06/me-forskningen-frustrasjonen-fremtiden/

It ends rather poignantly:
"This costs ie 9 million. People in this country are buying condos that cost more money. Here is an opportunity to influence the entire world for the same price."


(Note: 9 million Norwegian Krona is approximately £1 million or US$1.6 million at today's rates)
 

Sasha

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That Xmas cards article is about Drs Fluge & Melle getting loads of Xmas cards from ME patients! Great story. Here's the translation on Co-Cure from the link above:

Cancer Doctors flood of Christmas cards
Olav and Øystein get up to 50 cards from ME patients daily.

Anne Huso
E-mail anne[dot]huso[at]ba[dot]no
Published 19/12/2012 at 7:26

Cancer Doctors Olav Mella and Øystein Fluge get Christmas cards for
their efforts to solve ME-mystery.

- We realized that there was something going on when we got so many
letters with the address written correctly, because people tend to
struggle with it, says Professor Olav Mella of Haukeland to BA.

Christmas cards ACTION

He says that Christmas cards began to flow into his job at the
beginning of last week.

Because he has been a lot of traveling, he has no visibility, but
estimates that he together must have been over a hundred cards.

Also colleague Øystein Fluge get more Christmas cards than normal this year.

However, it is not quite common and Mella Cards Fluge received. The
cards are a result of the Norwegian ME Association's Christmas card
campaign, and is written by people who have ME, or have family or
friends with ME.

- Gripping tale

- I have read all that has come, and it's compelling stories that are
told. I have included received cards from a mother to her daughter who
has been ill-ME for 25 years, says Mella.

The reason for the action is that Fluge and Mella not received funding
to conduct a larger study on ME.

Previously they have had success with treating ME with cancer
medicine, and believes to understand better what kind of disease ME is
and how many patients can be significantly improved, some also feel
completely healthy.

They need, however, more extensive studies to confirm this. This
searched the Research Council for funding, but they were not allocated
funds for 2013.

DON Drawers

- Many people have a desire to make use of this medicine in future
treatment, and when I know how desperate this group is, I realize that
they were very disappointed. It is a patient group that has been
misunderstood for many years.

According to Mella was not unexpected that they received funding.

- I think maybe part had some unrealistic expectations that we would
receive these funds. There's very few projects that can get. ME is a
disease that really have something special medical field, and
therefore falls between two stools.

Study they want to do to be performed on more patients than last time,
and at several centers in Norway.

- The problem with a small study is that it is possible that the group
we have investigated by chance is different than the rest of the group
who have ME. In the previous study, there were 15 who received active
drug (medicine) and 15 who received placebo. Now we want to do the
survey so that 70 patients receiving active drug, while 70 receiving
placebo, says Mella.

- Number of patients selected by statistical calculations of risk of
ignoring a positive result. We also wish to draw experience from a
study we've done in the meantime, showing that maintenance therapy
prolongs the effect of the drug.

2013 at the earliest

He says that they do not intend to give up the fight.

- We are going to make some smaller studies, including laboratory work
to understand disease mechanisms - supported by the Kavli Foundation.
In February, we will seek new funds to be awarded by the Research
Council.

It is also an opportunity to do the study in collaboration with
researchers in other countries, but it is more demanding, says Mella.

Anyway, he is happy that people send Christmas cards.

- We are grateful for the commitment, and it encourages us to keep
working. Christmas cards are a reminder of how much this disease costs
both for those who are affected by it and those around.

He estimates that if they are granted adequate funds, the earliest
start with the large study in autumn 2013.

PAPER-BA WEDNESDAY PLEASE READ WHY ME ASSOCIATION HAS STARTED CAMPAIGN.
 

Sasha

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This is a blog post on http://debortgjemte.com/ from 6 December, after the funding for the Rituximab trial was not allocated.

http://debortgjemte.com/2012/12/06/me-forskningen-frustrasjonen-fremtiden/

It ends rather poignantly:
"This costs ie 9 million. People in this country are buying condos that cost more money. Here is an opportunity to influence the entire world for the same price."


(Note: 9 million Norwegian Krona is approximately £1 million or US$1.6 million at today's rates)
Only had time to skim this but you're finding good stuff, Purple! Thanks!
 

justy

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Pyrrhus

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Other discussions:
(It's fascinating to glance through these threads in chronological order. Progress is not a one-way street.)

Postinfectious and CF Syndromes: Clinical Experience from Norway (2010)
https://forums.phoenixrising.me/thr...ndromes-clinical-experience-from-norway.3429/

Norway bans ME/CFS patients from donating blood (2010)
https://forums.phoenixrising.me/threads/norway-bans-me-cfs-patients-from-donating-blood.7730/

CBT and GET can no longer be recommended for ME/CFS in Norway (2011)
https://forums.phoenixrising.me/thr...er-be-recommended-for-me-cfs-in-norway.11174/

Norway's Directorate of Health Apologises for Treatment of ME Patients (2011)
https://forums.phoenixrising.me/thr...pologises-for-treatment-of-me-patients.12864/

Another Pathogen for CFS: Giardia Outbreak Causes CFS ‘Outbreak’ in Norway (2012)
https://phoenixrising.me/archives/9209

Norway newspaper Dec 2012 about Rituximab (2013)
https://forums.phoenixrising.me/threads/norway-newspaper-dec-2012-about-rituximab.22254/

12 June 2014: Norway Multi-Site Clinical Trial: Funding and Commencement Update (2014)
https://forums.phoenixrising.me/thr...-trial-funding-and-commencement-update.30880/

Rituximab study in norway. An application to The Research Council of Norway (2014)
https://forums.phoenixrising.me/thr...tion-to-the-research-council-of-norway.31258/

MUPS = CFS (Norway/Denmark) (2014)
https://forums.phoenixrising.me/threads/mups-cfs-norway-denmark.31991/

Letter to the king of Norway from 58 children with ME (2015)
https://forums.phoenixrising.me/threads/letter-to-the-king-of-norway-from-58-children-with-me.35392/

The Research Council of Norway invites ME-patients to propose research projects (2016)
https://forums.phoenixrising.me/thr...-patients-to-propose-research-projects.44007/

Open letter to the Prime Minister of Norway (2016)
https://forums.phoenixrising.me/threads/open-letter-to-the-prime-minister-of-norway.44054/

(Norway) Lightning Process talk cancelled after protests from the ME Association (2016)
https://forums.phoenixrising.me/thr...after-protests-from-the-me-association.44215/

Comorbidities treated in primary care in children with CFS/ME (Norway) (2016)
https://forums.phoenixrising.me/thr...ry-care-in-children-with-cfs-me-norway.46614/

Appalling conditions for very severely ill ME sufferer in Norway (2016)
https://forums.phoenixrising.me/thr...ery-severely-ill-me-sufferer-in-norway.46923/

Good ME/CFS doctors in Norway? (2017)
https://forums.phoenixrising.me/threads/good-me-cfs-doctors-in-norway.49335/

About lack of help for severe ME-patients on national news (tv2) in Norway (2017)
https://forums.phoenixrising.me/thr...atients-on-national-news-tv2-in-norway.49862/

Dr David Tuller: The View From Norway (2018)
https://forums.phoenixrising.me/threads/dr-david-tuller-the-view-from-norway.62522/

"Left Out" documentary on ME/CFS research in Norway (2020)
https://forums.phoenixrising.me/threads/left-out-documentary-on-me-cfs-research-in-norway.79026/
 

Pyrrhus

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A new Norwegian two part documentary named "The ME scandal" has been released. It has English subtitles so everyone can see! It exposes the fraudulent science behind CBT/GET, Lightning Process, the PACE trial and the Wessely school, as well as lobbying and networking to the very top of political power, illegal discrimination of ME patients, biomedical findings, corrupt media, and much, much more.
https://forums.phoenixrising.me/threads/new-documentary-the-me-scandal.83446/
 

Pyrrhus

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For many years, the amazing Nina E. Steinkopf has been chronicling events in Norway in her blog "MElivet". ("about what it is like to live with ME")

Her blogs are written in both Norwegian and English.
https://melivet.com/

In her latest blog post, she describes how the highly controversial "Lightning Process" study has had its ethical approval withdrawn!
Excerpt:
MElivet.com said:
A study in which 120 ME patients were to be treated with the alternative method Lightning Process received an approval stamp in October. The approval has now been withdrawn.

On 16 November 2020, the Regional Committees for Medical and Health Research Ethics, REK Midt, decided to give ethical approval to the study where 100 ME patients were to be treated with the alternative method Lightning Process...
 

Pyrrhus

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Pyrrhus

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On 13-14 April 2021, there was a biomedical conference on ME held in Stryn, Norway.

There is now a lengthy report from that conference available:
https://21f7ca80-9ef6-46b7-bb41-8c5...d/53c278_03cd6de0c228402b95aab9a4fd157322.pdf

Excerpt:
The report contains an introductory part first with a few words from the organizer. Then comes the report about the lecturers who participated.

The professional conference:
David Tuller, Mady Hornig, Björn Bragée, Jonas Bergquist, Karl Johan Tronstad, Ingrid Guvrin Rekeland, Øystein
Fluge, Kristian Sommerfelt, Ola Didrik Saugstad, Linn Christin Skjevling, Line Melby, Anne Kielland.

Participation in the professional conference, tuesday April 13th – Wednesday 14th :
about 85 participants, including 11 physicians.

Evening lecture:
Ola Didrik Saugstad and Jørgen Jelstad.

Participation in the evening lecture, tuesday April 13th:
about 160 participants. Several different professions were present, including physician, nurse, physiotherapist, ergotherapist, environmental therapist, socionom, teacher, school nurse, with more....
There was also a biomedical conference in Stryn back in 2016:
https://forums.phoenixrising.me/threads/biomedical-me-conference-in-stryn-norway-12-13-april.44038/
 

Pyrrhus

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On 13-14 April 2021, there was a biomedical conference on ME held in Stryn, Norway.

There is now a lengthy report from that conference available:
https://21f7ca80-9ef6-46b7-bb41-8c5...d/53c278_03cd6de0c228402b95aab9a4fd157322.pdf

Two of the presentations from the conference are now available on Youtube with English subtitles:
https://www.mekonferansestryn.no/eveninglectures
Evening lectures by Ola Didrik Saugstad and Jørgen Jelstad is soon available with english subtitles on YouTube (subtitles must be enabled)

Ola Didrik Saugstad gave two lectures at the ME conference Stryn, one in the evening and one at the professional conference. Dr. Saugstad worked at the pediatric research institute until 2017. He then retired from that position, but continued working as a researcher at the University of Oslo, where a large research group is going to study ME from a immunological and genetical perspective, thorugh the «ImmunoME study». Blood samples from pasients will be a focal part of the study.

Saugstad has made several voluntary trips to visit those that have been hit by ME the hardest. He might be the one person in Norway who has seen the largest number of severly ill ME pasients. Saugstad has described this experience as shocking. The ME pasients er amongst the sickest among the sick. Many of them are bedridden in severe pain, and the sickest in this group is living in a state of semicomatose. Pain might not be the first thing that comes to mind when thinking about ME. What struck Saugstad while visiting the ME patients was the resemblance to pasients with encephalitis (inflammation of the brain). – The biggest betrayal done by the Norwegian health care services is the lack of curiousity in finding out the ins and outs regarding this disease, especially considering the severeness of the disease for a lot of the pasients in this group. A lot of Norwegian ME pasients have been treated poorly, says Saugstad.

Ola Didrik Saugstad have been working on the case of ME or over 20 years, and on the ME Conference Stryn 2021 he held the one lecture in the evening, titled: «Nytt lys på ME» - oppsummering av nokon av dei siste forskningsfunna («New light on ME – a summary of some of the latest research findings).

This lecture is available on YouTube with English subtitles:


Jørgen Jelstad: Research journalist and author of the book «De Bortgjemte» («The Hidden Ones»).

The book «De bortgjemte» («The Hidden Ones») is a result of over two years work. After the book came out in 2011, Jelstad has written updates from the research field on his blogg www.debortgjemte.com. Throughout several years he has held lectures about this subject and participated in the public debate about ME. Jelstad has been following this field closely the last decade, and he is really up to date on the lates from the research field, domestically and internationally.

He has been working on a new book that was published in the spring of 2021: “Våre liv, våre stemmer” (“Our lives, our voices”). This is an interview and photo book about ME and is a collaboration with Morten Borgersen, Fin Serck-Hanssen. Two of the initiators tied to the ME polyclinic at Sørlandet Hospital, Kim Fangen and Ole Rysstad, is involved in the project as well. Thousands of Norwegians are living with ME. In this book you get to meet them up close and personal; the pasients, their next-of-kin and the researchers that are working to come up with answers.

The theme that Jørgen Jelstad talked about on the ME Conference Stryn 2021 was «ME – Utviklinga når det gjeld forsking, synet på ME, og økonomisk midlar til biomedisinsk forsking gjennom tiår» («ME – The development in regards to research, the general perception on ME, and economic funds for biomedical research throughout decades»)

This lecture is available on YouTube with English subtitles:


The filmmaker Pål Schaathun made interview with the lecturers from Bergen; Kristian Sommerfelt, Ingrid Gurvind Rekeland and Øystein Fluge is available with English Subtitles. Read more here: https://www.mekonferansestryn.no/filminterviewenglishsubtitles