Scientists from a respected journal withdraw their study about chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME), as it gathers criticism from patients and activists. But the researchers involved in the study said the decision is "disproportionate and poorly justified" and is considered as a victory for activists disputing whether the condition has physical and psychological elements.
The research concluded exercise could help patients suffering from CFS, but some activists were outraged as they believed scientists are diminishing their illness. The Cochrane Review journal's editors requested the researchers conducted the study to agree for temporarily withdrawing the study published in 2017. The study authors were also asked to agree on a statement noting their analysis needs "further work in response to feedback and complaints."
The research regarding CFS/ME is highly controversial as the condition is poorly understood. It is a severe, chronic illness which is accompanied by long-term mental and physical fatigue. The patient groups in Australia, the United States, Europe and elsewhere are challenging each other to understand the nature of the illness, diagnosis, and whether it is treatable or not. Scientists who are analyzing the possible therapies for CFS/ME are usually being verbally abused and harassed by those who disagree with their findings.
The decision to withdraw the study prompted worries, particularly for scientific evidence being rejected by activists' opinions, said Colin Blakemore, who is a professor of neuroscience and philosophy at London University's School of Advanced Studies. The withdrawal is also considered as "a departure from the principle that has always guided Cochrane reviews," as the decision should always be based on the clinical and scientific evidence and should not be influenced by pressures and criticisms.
The study, which was headed by Lillebeth Larun - a Norwegian Institute of Public Health's scientist, analyzed the eight randomized controlled studies of exercise therapy, which could be a treatment for those who have CFS/ME. The research team's "moderate quality evidence" noted exercise could help some patients and concluded: "Exercise therapy had a positive effect on people's daily physical functioning, sleep, and self-ratings of overall health."
However, Cochrane editors David Tovey and Rachel Churchill pointed out the study gathered extensive feedback, so they considered removing it temporarily. Tovey also confirmed their decision to temporarily remove the research would allow the study authors to respond to the complaints that needed to be addressed.
Larun, who is the lead author of the research, said she's "disappointed" with the decision of Cochrane's editors as she believed the verdict was "disproportionate and poorly justified." She also said she wouldn't consider it as a discussion, but more of a "bias decision" from Cochrane editors.
According to the South China Morning Post, CFS/ME affects almost 250,000 people in Britain and more than 2.5 million people in the United States. The illness causes a person to experience sleep problems, headaches, joint pain, as well as fatigue.
Although the cause remains to be a mystery, some theories believed it might be related to a viral trigger. Most of the treatments suggested include graded exercise and cognitive behavioral, but critics say the condition isn't "all in the mind" - so they are discrediting some studies suggesting they shouldn't receive psychological or behavioral treatments as the condition is physically debilitating, not psychologically.
