Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.
Great Danes maybe?
A recent thread by @Andy sparked off this post: https://www.s4me.info/threads/open-...-term-investment-in-biomedical-research.5031/
Was skimming through the signatures in the open letter linked to in the above thread and stumbled across this one:
Rikke Katrine Jentoft Olsen, MSc (biology), PhD (medicine)
Research Unit for Molecular Medicine, Department of Clinical Medicine
There are two other Danish signatures, too, but this one jumped out at me because Aarhus, Denmark is Fink territory so I was curious about this Rikke Katrine Jentoft Olsen and googled her. Result: an article about using Seahorse to study mitochondria in ME in a publication called “Dansk Kemi” (Danish Chemistry), of all things, dated January 2018. All in Danish but posting it here to show that some biomedical research is happening even in Denmark.
Online text version if anybody wants to Google translate: https://www.kemifokus.dk/kronisk-traethedssyndrom-en-usynlig-sygdom/
Or as pdf with nice graphics: http://www.kemifokus.dk/wp-content/uploads/sites/7/DAK1-2018-s20-24.pdf
Extract (Google translation)
Author and pwME Karin Alvtegen was interviewed on the radio yesterday 23 July, P4 Extra (audio, 18 min, Swedish).
She mentioned that she will try to write a book about ME next year
An odd article appeared as the main front news at the Norwegian Broadcaster's website yesterday. I tells about a young girl with debilitating pain, and how she has been helped by a group of specialist on "children's pain" at one of the biggest hospitals.
The article doesn't mention ME, but the senior doctor from this group on children's pain who is interviewed in the article, works for the national center of excellence for ME/CFS and the national center of excellence for psychosomatic disorders in children and adolescents.
The girl in the article feels she has received understanding and help. She has been reassured that her pain is not dangerous and has reduced her school participation. She is encouraged to exercise and feel this is helping, but at the same time the article informs that her pain has increased.
NRK: Stresset har slett rot i kroppen til Christine
google translation: Stress has taken root in Christine's body
Here is the doctor's explanation for Christine's "mysterious" pain:
A vital signal
"It does not give any meaning to think of pain as something merely physically," Helene Helgeland claims.
She explains that all pain is real pain. Concerns, unrest and other types of psychological stress can cause as much pain as physical injury. It's important that more people understand the correlation, how the pain can occur and continue.
Usually pain is a vital signal. Pain is the body trying to tell if it is in danger - it acts as a kind of alarm system.
For instance it makes you pull your arm if you get burned, so you avoid hurting yourself.
With Christine and others with long lasting pain one can say that the alarm has gotten stuck.
There may be different factors that maintain the pain than those who initiated them.
Previous experiences, worries, negative thoughts and how much you focus on the pain affect the way you experience them. One person who is worried that the pain can be dangerous, will experience stronger pain than someone who is confident that the pain is harmless.
Helgeland claims that the body is like a fortress that protects itself against dangers. There are many systems that regulate stress in the body, and everyone has a tower in the fortress. The nervous system, the hormone system, the immune system and the biological circadian clock all have a tower of their own. Even if this is a system with different tasks and functions, they are connected. If one of the towers is attacked, then the other towers can be activated if needed. In some cases, all towers go into defence.
A tower that is often exposed for attack is more alert than a tower that is never in danger.
Usually the body returns to a peaceful state when the danger is over, but for Christine it doesn't. The body is still on guard and ready for a new attack.
Helgeland emphasizes that this is not something that's merely in the head, it is not a imaginative. For Christine, the stomach catarrh could have been a triggering factor. The uncertainty in the meeting with the health care and a stressful school day might have kept the pain condition, even if what initiated the pain is gone.
That was my thought as well, very odd. Not really saying anything. The article also makes a reference to several cases of young people a few years back being in so much pain (unexplained) that they had to be put in an artificial coma because it was so intense. Pretty odd to say the pain is not dangerous when it is so intense they elect to put kids into comas to relieve them of it.
Development in the Danish Marie Louise-case
Professor Ola D. Saugstad will travel from Norway to Denmark to visit Marie Louise and her family. At the same time he will give a lecture about ME at the local municipality. He has visited many of the most severe ME patients in Norway, so is one of few doctors who has seen a lot of the severe cases. He is also at the advisory committee for the Norwegian ME Association, has participated in the ME debate for many years and does research on ME. One of our heroes
Here is the article from the local newspaper about his visit (not possible to google translate)
Ugeavisen Esbjerg: Gennembrudd i ME-sagen
Ola is such a hero.
Still think it's odd that no major Danish news outlet has picked up on the Marie Louise-case. What has happened so far is just bizarre. But then again even the Karina-case had very little mainstream news coverage in DK.
Excellent and sensitive writing by journalist Erik Haldan – a shame not all of his articles can be google-translated, they're well worth reading.
Good on the newspaper Ugeavisen Esbjerg for giving so much column space to the issue, repeatedly and over a long period of time. Only one complaint in the unlikely event anyone on the Ugeavisen staff is reading this: please make all Erik's articles available in the online edition so they can be google-translated for the benefit of non-Scandinavian speakers.
Shame on the local councils Fanø Kommune and Esbjerg Kommune for their ignorant treatment of Marie Louise. Let's hope that Ola Saugstad's visit will contribute to a change in attitude there. Crossing my fingers and toes for you, Marie Louise, and also for your wonderful parents Esben and Vibeke.
Yet another phenomenal comment by Sten Helmfrid, this time in reply to a blog post written by a BPS extremist. Definitely worth a read
Here's a direct link to Helmfrid's text (in Swedish):
Two events about ME in Norway tomorrow
First event is at a huge, weeklong political festival in the small town Arendal. Every year this is a startup for the autumn for politicians, journalists, organisations - everyone who is someone is present.
The Norwegian ME Association and Millions Missing Norway about ME and research
The general secretary from the Norwegian ME Association will welcome everyone and a board member will open the event.
Professor Karl Johan Tronstad from the university in Bergen (working close with Fluge/Mella) will talk about his research on energy metabolism.
Line Melby from Sintef will talk about her research on the demographic and socioeconomic background for ME-patients and how the patients are met by the health services, at work and at school.
Hilde Nilsen from Millions Missing will talk about what status is now in 2018
Debate about research and what can be done while we are waiting for the research results
What are the greatest challenges?
What is the best possible way to help?
Debaters are representatives from two of the biggest political parties (conservative party and the labour party), patient Elisabeth Røyseth, patient, doctor and board member at the Norwegian ME Association Nina Werring Lie, researcher Line Melby from Sintef, consultant for the ME Norwegian Association Elin Myklebust, representative from an out patient clinic for ME Liv Kari Johnson.
The event starts at 14.00 and can be live streamed (I guess from The Norwegian ME Association's facebook page and/or from Millions Missing Norway's facebook page)
Concert in Stavanger raising money for research into ME
This is a private initiative for a church concert raising money for research into ME. There will be music and poetry reading. Professor Karl Johan Tronstad will come straight from the other event to Stavanger and give a talk about his research.
Here is an article about the organisators behind the event, parents to a young man who suffers from ME.
Guten til Magnhild og Gunnar har ME
google translation: Magnhild and Gunnar's boy has ME
- This disease varies greatly in strength from person to person. Some may lie in peace in dark rooms, while others may participate 50 percent at school. What we all share is hope for treatments that can cure ME. We think there is allocated too little funds for research. For now we don't know exactly exactly what is wrong in the bodies to ME patients. In order to find out we need more research. Gunnar and I want to do what we can to raise more money. That's why we arrange a concert in order to support the doctor team at Haukeland university hospital who is researching ME.
The concert, entitled "Hope," is at Friday 17 August in St. Peter's church in Stavanger at 19.30.
The Journal of the Norwegian Psychological Association has spoken to a specialist in clinical psychology, Johan Siqveland, who says the "evidence-based" practice is little worthwhile when the research that substantiates the practice is not to be trusted.
He uses the PACE trial as example.
Tidsskrift for Norsk psykologforening: Mer nøytral forskning
Google translate: More neutral research
"This is another challenge in the research. The desire to find something - and publish - that constitutes a significant difference. Traditionally, there has been less demand for research stringency in psychotherapy research compared to medical research. For example, it has been common to not register the trial in advance, nor to state how to measure outcomes. That means it's easy to manipulate numbers and only bring those outcomes that seem to be significant, although it may be random finds. This kind of research error can be much easier revealed if the research is transparent, and if you know in advance which variables the researchers will measure the effect of. There are several major controversies currently in this field. A concrete example is the so-called PACE study, published in the Lancet magazine in 2014, which showed the effect of cognitive behavioral therapy on ME disorder. That study is demanded by several to be withdrawn from the journal due to lack of research decency.
Edit to add: oops, this article is two years old..
But was tweeted by the journal today and it is unfortunately just as relevant now as it was two years ago.
The Norwegian Broadcasting Corporation (NRK) writes about the recent survey from the Norwegian ME Association on rehabilitation centres and ME.
NRK: ME-sjuke Kristin vart endå sjukare etter behandling
google translation: ME-patient Kristin got even worse after treatment
The article has an interview with ME patient Kristin, who got ill with ME in 2011. She went to a rehabilitation centre for three weeks with focus on CBT/GET. She deteriorated and it took a long time for her to recover from her stay.
The doctor at the rehabilitation center seems surprised that some patients are not happy with their stay and says they are just following guidelines.
Ingrid Helland, the senior doctor at the National Competence Center for CFS/ME (and eager of CBT/GET, Lightning Process etc) says exercise can be good, but doesn't fit everyone. She stresses that the survey from the ME Association is not a scientific study and that one doesn't know if the patients in the survey are representative.
2 316 ME patients participated in the survey.
The Google translation of the first paragraph is a bit unfortunate!
(See attachment: if easily offended, don't open)
There is an option to improve the translation on Google.
The words in bold don't look correct.
Oh dear... Yes, some improvement of the google translation is desired..
There are two versions of written Norwegian, one based on Danish and one based on regional accents. This text was written in the latter, and it seems to confuse the google-translation a great deal. If others can suggest a better translation service for the article, it would be much appreciated.
The first bolded word (unaware) should be disagree
The second bolded word (proper) should be out-of-date
My, my. It seems google won't put professional translators out of their jobs just yet..
A petition from an ME patient demanding that leaders of the Norwegian national center of excellence for CFS/ME (known for a strong belief in a biopsychosocial approach) must go.
The background for this petition is explained in a blogpost from the initiator Nina E. Steinkopf.
Underskriftskampanje: Ledelsen i Nasjonal kompetansetjeneste for CFS/ME må gå!
google translation: Petition: The leaders of the National Center of excellence for CFS/ME must go!
The National Center of excellence for CFS/ME has chosen a biopsychosocial understanding model for ME and merges ME with other conditions. This leads to improper treatment and poor offerings for ME patients. Support the signature campaign that requires management in the competence service to go!
Link to petition: Ledelsen i Nasjonal kompetansetjeneste for CFS/ME må gå!
google translate: The leaders of the National Center of excellence for CFS/ME must go!
Nearly 500 signatures now in just a couple of hours.
Edit to add: Over 900 signatures by now.
Edit: 1 000 signatures.
Edit: 1 300 signatures.
Letter to the editor from an ME patient and author of a book about living with ME (Når livet sporer av - Å leve med ME).
This is published in a news site for doctors and other health personell.
Kristina Vedel Nielsen: ME-pasientene må få vite at de er alvorlig syke
google translation: ME patients must be told that they are seriously ill
Trivialisation of disease causes patients to receive wrong advice, and recommendations for treatment that make them sicker. It is high time with a proper clean up within the aid system, where bad attitudes have survived.
When healthcare professionals don't tell patients that they have a serious illness, they will also not receive proper follow-up and facilitation. Patients will continue as before and experience symptom worsening and deterioration of the disease.
1500 signatures by now.
People outside of Norway are also welcome to sign the petition.
Here is a tweet from today by the initiator:
Edit to add: I made a thread about the petition in the Advocacy Action Alert forum
Here is a film with prof. Saugstad's recent talk about ME in Denmark.
Duration: 48 minutes
Separate names with a comma.