“ME expert” is not researching ME

Vegard B. B. Wyller has been referred to as an «ME expert» in Norway for almost 20 years. But; is he really studying ME?

Recently it became known that Norwegian health authorities support a controversial study in which ME patients are to be treated with the alternative method Lightning Process. Vegard B. B. Wyller is part of the research team, and the project description states that he is Norway’s most published researcher in the field of chronic fatigue with more than 40 published articles. In Dagbladet’s tabloid articles in May 2020, he is presented as ME researcher, and that he «has been studying ME for almost twenty years».

I’ve taken a closer look at Wyllers research.

In 2014, the Norwegian Directorate of Health published guidelines for CFS / ME. The Canada criteria, the Fukuda criteria and Jasons Pediatric criteria are recommended for diagnosis and research on the patient group. Post Exertional Malaise (PEM) is a cardinal symptom. A whole range of symptoms must be present before the diagnosis can be set:

The 2003 Canada criteria require at least 12 symptoms in addition to fatigue and PEM.

The 1994 Fukuda definitions require more than 6 months of continuous, unexplained fatigue, and PEM is one of 8 additional symptoms where at least 4 are required.

Jason’s pediatric criteria from 2006 require more than 3 months of unexplained and continuous fatigue, PEM, and at least 6 symptoms.

By all these criteria, psychological disorders must be excluded as the cause of the symptoms.

Wyller’s hypothesis from 2007 is that CFS / ME is a sustained arousal stress response and that personality, emotions and psychological trauma contribute to the development of the disease. The hypothesis is still not proved. Here is an overview of 39 scientific articles that Wyller has published or has co-authored. As far as I can see, the only requirement is that the study participants have had unexplained fatigue for more than 3 or 6 months, with no requirements for any other symptoms. Can this be called ME-research?

See an overview here: Wyller: articles and criteria.

Wyller has been allocated most of the research funding in the field over the last 15 years. In April this year he was awarded NOK 12 million for a new study.

Vegard B. B. Wyller recently published a study in which adolescents with acute EBV infection were treated with music therapy and a method that has many similarities with the Lightning Process. It will most likely be used as an argument for getting the LP-study approved by REK. Read my analysis of the study here: Cure ME with music? The study has also received international criticism where several professors recommend it to be revised and temporarily withdrawn.

A Norwegian article in the journal for Research Ethics, “The War on Truth” explains some of history: Ellen Piro, founder of the Norwegian ME-association: – The professional teams’ use of different diagnostic criteria is like comparing apples and oranges. We are aware that there are major bias in this research area”. This was in 2007.

I question whether Vegard B. B. Wyller can be called an ME expert, and whether his research is relevant to ME. I also question that health authorities, the Norwegian Directorate of Health and the National Competence Service for CFS/ME refer to Wyller’s research.

 

Written by

Nina E. Steinkopf

Former HSE and Quality Director in international petroleum corporations, now; ME-patient and author on www.melivet.com

 

 

Read more her: Wyller is not an ME expert

 

Wyller is known for recommending Lightning Process. Read more here. 13-year-old attempted suicide after ME-course

 

 

Én tanke på ““ME expert” is not researching ME

  1. The main empirical finding that supports “the sustained arousal” theory that Wyller promotes is that a lot of the patients seem to have an overactive sympathetic nervous system. But is this finding unique to ME? Research indicates that this observation is very common in a variety of diseases:

    «An overactive sympathetic nervous system has become an identified characteristic of several cardiovascular diseases including, ischemic heart disease (Graham et al., 2004), chronic heart failure (Leimbach et al., 1986), and hypertension (Grassi, 1998). However, elevated SNA is not isolated to diseases of the cardiovascular system and has also been reported in a plethora of other conditions including: kidney disease (Converse et al., 1992), type II diabetes mellitus (Huggett et al., 2003), obesity (Grassi et al., 2007), metabolic syndrome (Grassi et al., 2005), obstructive sleep apnea (Narkiewicz and Somers, 1997), pre-eclampsia (Greenwood et al., 2003), depression (Barton et al., 2007), and ulcerative colitis (Furlan et al., 2006)»

    Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2679852/

    Reading this brings up a few questions. When sympathetic overactivation is present in a plethora of different diseases, why shouldn’t they also be treated primarily through CBT, as the supporters of the biopsychosocial paradigm argue? Why should they primarily be treated through medication, while only ME patients are left with CBT as the only treatment alternative? And when this is such a common finding across many diseases, does it make sense to base the theory on what ME is on this very common finding? Why should it be any more central/important in this illness than in any of the others?

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