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In response to concerns raised by members of the Chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (or encephalopathy) (ME) community, Cochrane has been considering repositioning the editorial oversight of CFS/ME reviews. I hope the overwhelming amount of research pointing towards ME not...

Apologies if it has been posted before. I've heard about it, but haven't seen this official statement from Cochrane about it. It's not dated, but listed on 3.rd place on the front page of Cochrane, so I gather the statement is new? Cochrane considering the repositioning of Chronic Fatigue...

Video with author and journalist Jørgen Jelstad. There's no doubt that ME has been a field of controversy. A lot of the problems is because very little research has been done. If you looks at numbers from USA, you'll find that one year of research into MS is equivalent to 25 years of ME...

Video with Ellen V. Piro - who founded the Norwegian ME Association 30 years ago. When she started the ME Association, ME was completely unknown. Since then there's been a big change. ME patients have received apologies from the prime minister and from the Directorate of Health. She thinks ME...

I wish it could have included something about why a disease like ME hasn't been prioritised in medical research and thus was doomed a faith as medically unexplained. I also miss a critical discussion about the term "medically unexplained" (I've just skimmed the article, perhaps it's included and...

Through positive and negative descriptions, our study participants articulate—directly or indirectly—the same basic expectations and experiences. Regarding expectations, the core message that runs through both datasets is that caregivers ought to acknowledge the lack of medical knowledge; be...

The main author, prof. in sociology Olaug Lian, published in 2015 "United we stand": Framing Myalgic Encephalomyelitis in a Virtual Symbolic Community Abstract In this article, we report on a study that seeks to explore how the contested chronic condition myalgic encephalomyelitis (ME), one of...

Sveinung Stensland is member of the Parliament and the spokesperson for issues concerning health for Høyre - the Conservative party. He is a pharmacist by education. He says he's getting more and more engaged in ME. There are many myths about the disease. He notice that the knowledge and...

Kristina Vedel Nielsen, ME patient since 2012 and author of a self help book about ME. She talks a bit about ME and how important it is to acknowledge that this is a serious disease. It's also important that health care personell understand and can help with the changes a disease like this can...

Not that I know of, but I believe Tuller's first lecture in Norway from Tuesday this week in Oslo, also was filmed and I think that one might become available on YouTube in a while.

Mette Schøyen is advisor for children and adolescents for the Norwegian ME Association. She says it's important that everyone acknowledges what ME is. That it is a serious, multi systemic disease. This must be the basis for meeting children and adolescents with ME in order for them to...

#MEAction: Study shows red blood cells less deformable in ME patients - possible biomarker Author: Ron Davis This paper documents that red blood cells are less deformable in ME/CFS patients compared to healthy controls. It potentially could be a biomarker, and we are proceeding to design new...

A few years ago Magnus Carlsen donated a signed chessboard for ME research, so who knows :)

6 000 signatures :balloons::balloons::balloons:

Rituximab Serum Concentrations and Anti- Rituximab Antibodies During B-Cell Depletion Therapy for Myalgic Encephalopathy/Chronic Fatigue Syndrome Rekeland, Fluge, Mella et al (only the abstract is available for now) Findings There were no significant differences in mean serum rituximab...

David Tuller and the chairman of the board of the Norwegian ME Association, Bjørn K. Getz Wold in meeting with MD Bjørn Guldvog, deputy director of the Norwegian Directorate of Health. Bjørn Guldvog is known among ME-patients for the following quote from 2011: - "I think that we have not cared...

- This review has had a catastrophic effect on people with ME who are still being forced to have an ineffective and potentially harmful treatment. Imagine if it was a drug or a vaccine with even a fraction of the evidence of harm, combined with such poor evidence of benefit? People assume that...

I SO wish I could be there and at the open lecture in Oslo, but was not able to make the journey. So was very grateful that it got live-streamed. Great talk!

Last week professor Karl Johan Tronstad (researcher working together with Fluge/Mella) and professor Kristian Sommerfelt (paediatric neurologist with over 20 years experience from ME, also cooperating with Fluge/Mella) came to Stavanger to give lectures on ME. The event was organised by the...