Discussion in 'General ME/CFS News' started by Kalliope, Nov 2, 2017.
There are probably more accurate terms than "fatigue" for that symptom and most others.
Conscious I'm taking this thread OT so I'll stop there and pick it up if it pops up elsewhere!
The researchers Karl Johan Tronstad, Øystein Fluge and Olav Mella with a response.
Kronisk utmattelsessyndrom og pyruvat dehydregonasefunksjon
Edit to add:
Google translation: Tronstad/Fluge/Mella: Chronic Fatigue Syndrome and pyruvate dehydrogenase function
Many thanks to @Andy for helping out with google translation!
A 12 year old boy talked about ME with his doctor Kristian Sommerfelt in front of medical students
Forelesning for legestudenter
In English: A young hero
Because of his ME, Truls is rarely able to leave home. But when his doctor Kristian Sommerfelt asked for his help in educating medical students, Truls didn’t hesitate at all. He agreed to join Sommerfelt’s lecture. «We need more doctors like Kristian» Truls says, «and so I have to explain to them what this is all about».
A good and thorough article in the Journal of the Norwegian Psychological Association about a family where several have ME. Due to lack of knowledge on ME from health services, they experienced twice to have the child welfare authorities involved. The article describes what this did to the family.
ME-syke kjemper for å bli trodd
google translation: ME-patients fighting to be believed
Edit to add:
This is their cover photo. I think it is superb.
The Swedish doctor Björn Bragée is known from among other things a TV-show (Arga doktorn/The angry doctor) where he helped patients with insufficient care. He has recently opened a medical clinic for ME-patients. He was interviewed on Swedish television today where he talks about ME, the importance of correct diagnose, research and how things are moving forward.
Duration: 8 minutes. Language: Swedish
Smärtläkaren om kronisk trötthet, ME. "Svenska läkare förstår inte symtomen"
I agree, @Kalliope , this is really good. I hope it's publication in the Journal of the Norwegian Psychology Association helps other children with ME in the future
Thank you, @Kalliope! The articles are very interesting.
Chronic fatigue, or as I call it, extreme exhaustion, is the major symptom that I have with ME. Next would be PEM. I've never heard anyone claim before that chronic fatigue isn't a typical symptom of our illness.
Interview with the famous crime fiction author Karin Alvtegen in one of the biggest newspapers in Sweden. She talks about her ME, the every-day struggle and the need for more research and knowledge. She is published in 28 countries and a big celebrity in Sweden.
The article is behind paywall.
SVD: Alvtegen om sjukdomen: "Bestämt mig för att berätta"
- I have decided to tell about my illness to spread information about ME/CFS and to voice all the misunderstanding that exists around in Sweden. There is an enormous suffering. Many are sicker than me, about 25 percent are completely house bound, often bed bound. We need help, and more money has to go to research into the disease. We are so many that politicians have to open their eyes.
I think the interview and article is very good and well written. It will surely contribute to more awareness about ME/CFS here.
Interview with Mady Hornig by The Norwegian ME Association from her recent visit to Norway.
She talks about the ME, research, possible subgroups..
Duration: 39 minutes. Language: English with Norwegian subtitles
New article today in Svenska Dagbladet (whom yesterday had a very good interview with the crime fiction author Karin Alvtegen about her ME).
This time they write about social security and ME. They've done som digging and claim that 30% of all long term sickness leaves are due to ME.
The article is behind a paywall, but here are to google-translated extracts:
- Our search in the legal database Acta Publica shows that, until now only 2019, 409 decisions from the Social Insurance Fund regarding fatigue syndrome have been appealed by applicants who have been refused and passed on to administrative law. Since 2013, nearly 2,000 similar cases have been appealed.
"We have found that there are different opinions in the medical field regarding causes and treatment strategies for diagnosing ME / CFS. This makes our job harder and therefore we have asked the National Board of Health to prepare a decision support for the diagnosis, "says Lars-Åke Brattlund, Insurance Director at Försäkringskassan.
Svenska Dagbladet - Gåtfull sjukdom ökar snabbt bland sjukskrivningar
Without any other info that seems a high figure. Might be conflation of chronic fatigue with ME.
More from the article (google translated)
In 2015, stress-related symptoms, ie reactions to severe stress and adaptive disorders, accounted for almost half (49 percent) of all illnesses lasting more than 14 days, according to the Social Insurance Fund.
Some of these are acute stress reactions that heal after some time. However, according to sampling in a sample of the country's counties, the Insurance Fund made 2016 chronic fatigue syndrome for 30 percent.
If you multiply the above-mentioned proportions - 49 percent by 30 percent - we get an indication that chronic fatigue syndrome can account for about 15 percent of all illnesses in Sweden longer than 14 days. Any more accurate assessment than there is not.
But it is good anyway to see Swedish media taking an interest in ME. My impression is that things are slowly turning around in Sweden as in accepting that there IS something as ME. It is a small step, I know, but it is in the right direction. I believe the Swedish patient organisation is doing a lot of good and important lobbying on and behind the scene.
For third day in a row the Swedish newspaper Svenska Dagbladet has a featured article on ME. First it was an interview with the crime fiction author Karin Alvtegen and her life with ME. Then it was an article on the welfare system and ME (seems patients were upset about this one, as it mixed chronic fatigue with ME and contained some mistakes). Today the newspaper write about ME and research. Professor emeritus Jonas Blomberg talks about ME in Sweden. Vicky Wittemore and Joseph Breen from NIH talks about their recent grant to ME-research and a couple of the current hot topics. Joseph Breen says that there are all signs of a virus spread disease, without the virus itself. This is reflected in the title of the article - Virus suspected as cause of chronic fatigue.
The article is behind paywall, so can't google translate it.
Svenska Dagbladet - Virus misstänks orsaka kronisk utmattning
The debate about the Tronstad/Fluge/Mella-study on ME and pyruvate dehydregonase in the journal for the Norwegian Medical Association continues.
It started off with Yngve Thomas Bliksrud's "Tenuous link between chronic fatigue syndrome and pyruvate dehydregonase" This has been translated into English by the journal.
Bliksrud received an answer from Tronstad/Fluge/Mella.
Bliksrud replied and today he has received yet another answer from Tronstad/Fluge/Mella.
I can't figure out how to google translate the debate into English - but here is the link to the Norwegian text.
Edit to add: google translation of Tronstad/Fluge/Mella's latest reply from today.
More about pyruvate dehydregonase and chronic fatigue syndrome
Today there are two new articles in the Swedish newspaper Svenska Dagbladet about ME. They too are well written and will contribute to a new era in Sweden, I´m sure. They are both behind a paywall.
"There is a need for a crisis commision for the disease ME/CFS"
Prof. Jonas Blomberg is interviewed.
"Misunderstandings contribute to the fact that the disease is often called fatigue syndrome. That is, many patients mean that calling cancer for an ill-illness, because fatigue is just one of several symptoms. - A better word is, in that case, exhaustion syndrome. Typical of the disease is that you get extremely physically exhausted already in light physical activity, says Jonas Blomberg".
"No treatment can cure 15 year-old Johan"
Edit: The interview with professor and ME-researcher Jonas Blomberg is no longer behind a paywall. Just click on the title above to get the full article.
Click on the link titled "Kronisk utmattelsessyndrom og pyruvat dehydrogenasefunksjon", this will take you to the web page with the full text of the comment, the URL of this new page can then be translated by Google, https://translate.google.co.uk/tran...m-og-pyruvat-dehydrogenasefunksjon&edit-text=
Separate names with a comma.