Controversial study on ME-patients receives ethical approval

On November 10th 2020, English health authorities published a draft of a new set of guidelines for ME/CFS. It is confirmed that ME is a physiological disease, and it is advised against therapy and exercise as treatment. It is especially warned against the Lightning Process (LP). Read more here: English health authorities reject therapy as treatment for ME and here: The Guardian: Fatigue syndrome: Exercise therapy loses NICE recommendation

The Regional Committees for Medical and Health Research Ethics (REK) have now approved a controversial Norwegian study in which 120 ME patients are to be treated with LP. The decision, dated November 16th 2020, states that:

“After an overall assessment of the project application and feedback, the committee believes that the participants’ integrity and welfare are well safeguarded, and that the project will be able to produce new, socially useful knowledge. Provided that the conditions below are complied with, REK considers that the project is justifiable to carry out.”

Read the decision letter here (in Norwegian): Final decision from REK

Criticism

The planned study has received a lot of criticism both in Norway and abroad. The reason is a.o. that the method can be very harmful to ME-patients and that the study is designed to have a positive result. Read more here: Study on ME patients; Cynical, unethical and indefensible.

Read 17 patient stories here: Lightning Process can be harmful to ME patients.

Psychologist Bente Dahl compares the method to conversion therapy. Read more here: LP and healing of gays.

NRK: 13-year-old attempted suicide after ME course.

Norwegian health authorities and NAV have been criticized for supporting the study. Read more here: Health authorities support research on controversial alternative treatment and here: Reprehensible by NAV to support controversial study.

Prof. Ola D. Saugstad has long warned against LP. Read more in Aftenposten: It is not true that the risk of LP and cognitive behavioral therapy is minimal.

Criticism abroad

Professor Edzard Ernst also warns against what he calls quackery: The Lightning Process; Implausible, unproven, hyped and expensive.

Professor of Psychology Brian Hughes at the National University of Ireland, Galway in Ireland writes: Two takes on the expensive, unproven and childishly named quackery known as the Lightning Process.

Senior Fellow in Public Health in Journalism at the Center of Global Public Health at Berkeley University in California David Tuller is also critical of the study: Trial by Error: Norway’s proposed Lightning Process trial. He has written more about LP here: The Lightning Process strikes again.

Written by

Nina E. Steinkopf

Formerly HSE and Quality Director

Now; ME-patient and writer

Én tanke på “Controversial study on ME-patients receives ethical approval

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