Live Landmark (1) is a previous journalist and a ME-patient from Norway. She recovered with Lightning Process in 2007 and became a practitioner. Her story is published in the book «Wake me when its over – diagnosis ME» (2) in 2009.
She has been a vocal advocate for a biopsychosocial approach to ME since 2010 and called for research (4) on the controversial alternative therapy known as Lightning Process in 2016. In 2020 her research group received funding for «A 3-day intervention for CFS/ME in adults: a randomised controlled trial» (5) and she became a phd student in psychology on NTNU (6)
The study will have 120 patients with CFS/ME attending Lightning Process and evaluate physical function, fatigue, pain, PEM, wellbeing and quality of life, through the use of a questionnaire, after the 3 day seminar.
The study is controversial for a multitude of reasons. One of them being that it is a waiting list trial, instead of using a conventional control group that don't get the same treatment. In other words, it will not be possible to seperate the effect of the intervention from the placebo effect. Another reason for the controversies is that Live Landmark, as a practitioner, have strong financial incentives to get positive results. Yet another reason is that no objective outcomes have been included at all. There have also been raised concerns regarding the safety of the participants, as many have reported severe deterioration after LP. Any participants that feel worse during the trial will be sent to a psychiatrist or psychologist, but will receive no medical help.
The research project have received supprt from the Norwegian Directorate of Health, the Norwegian Labour and Welfare Administration and the National Competence service for CFS/ME. The research group consist of
Professor Leif Edward Ottesen Kennair (7), NTNU.
Professor Mons Bendixen (8), NTNU.
Professor Egil Andreas Fors (9), NTNU
Professor Silje Endresen Reme (10), UiO.
Professor Vegard Bruun Bratholm Wyller
The research group cooperate with Haukeland University Hospital with neurologist Jone Owe (phd) (11) and the National Institute of Public Health with Professor Per Minor Magnus (12). The research group also have a cooperation with University of Bristol with professor Esther Crawley.
Live Landmark was also one of the first members of Recovery Norway, an organisation initiated by medical doctor Henrik Vogt, phd and a group of Lightning Process practitioners(13). Recovery Norway (14) is an organisation consisting of people that have had improvement from ME/CFS, tinnitus, long term stress, burnout, depression etc., and who feel that mental techniques have been instrumental in their improvement. People who have recovered with medication, supplements, diet etc. are not allowed to enter.
People have been reporting both improving and worsening after Lightning Process but there have been few studies, and the studies that have been done have been poor quality. The first study was a qualitative study (15) with 9 young people with CFS/ME where 6 felt that they improved, and 2 had no effect and one felt worse. The lead author, was professor Silje Endresen Reme. There have been one randomised controllet trial (16) on 100 young people with CFS/ME attending Lightning Process, where they reported positive effects on some measurements. The study has been highly controversial for a multitude of reasons.
In 2011, a 13-year-old boy attempted suicide after attending an LP course with her company Aktiv Prosess (17)
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myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
randomized controlled trial (RCT) - A trial in which participants are randomly assigned to two groups, with one group receiving the treatment being studied and a control or comparison group receiving a sham treatment, placebo, or comparison treatment.
post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others.
objective outcome An outcome of a clinical trial that is independent of the judgement of opinion of the assessor/clinician, e.g. distance walked in 6 minutes. Patient-reported outcomes like questionnaires are not objectives.