Openevidence Reviews 26

To echo a lot of these others reviews, I am deeply concerned that OpenEvidence is recommending graded exercise therapy (GET) for ME/CFS. This guidance is outdated, inaccurate, and dangerous for patients. The NICE guidelines (UK) and other major health authorities have recognised that GET can cause significant harm to people with ME/CFS, yet OpenEvidence appears to be disregarding this evidence.

Patients with ME/CFS deserve accurate, science-based recommendations that prioritize their well-being. Encouraging GET risks worsening symptoms and contributing to long-term disability for many. OpenEvidence should immediately review and correct their recommendations to reflect current medical consensus and patient safety.

The treatments for ME/CFS given by the app are graded exercise therapy (GET) and cognitive behavioral therapy (CBT). Both treatments have been debunked by studies. Feedback was given to the app, but the guidelines have not been changed.

Openevidence is using information found in studies that has been debunked. Graded exercise therapy (GET) is harmful to patients with ME/CFS. Doctors use Openevidence as a resource and are being given misinformation and subsequently are treating patients with GET causing potential harm. Stop using outdated and debunked studies. You are not Open (evidence) if you are not using evidence in your business model.

Open evidence is using outdated and harmful information regarding one of the most debilitating illnesses in the world. This is dangerous for the health and well-being of the population of people with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). I have experienced extreme loss of quality of life and reduction in my baseline multiple times in my life due to forced GET and CBT treatments prior to the newer research being more widespread and known.

The most recent research and publications from providers around the world make it very clear that GET and CBT are not only unhelpful for patients with ME/CFS - they are actively harmful and may cause significant to permanent damage and deterioration to the patients’ baseline health.

Here's what the NIH says about these issues:

"The British National Institute for Health and Care Excellence (NICE) recently published its updated guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). NICE concluded, after an extensive review of the literature, that graded exercise therapy (GET) is harmful and should not be used, and that cognitive behavioural therapy (CBT) is only an adjunctive and not a curative treatment."

Promoting false information about treatment for severe, debilitating, chronic illness that is still in need of vast funding and research for gain of effective treatment is amoral and threatens the already limited quality of life of every patient with ME/CFS. Please update the ME/CFS space with current, safe information based on the most recent, experienced, and authentic research efforts.

OpenEvidence recommends GET (graded exercise) for ME/CFS patients, although this type of treatment can actively harm these people. GET can actually make them worse permanently.

OpenEvidence is basically the opposite of "UpToDate" because they use outdated information. If you're a doctor that is thinking about using OpenEvidence, think long and hard about the legal liability associated with recommending incorrect treatments. For example, OpenEvidence recommends graded exercise therapy (GET) for patients with Myalgic Encephalomyelitis (ME/CFS). This recommendation is based on a medical guidebook that was published more than a decade ago (in 2012). In more recent years, the research supporting GET for ME/CFS was completely debunked and newer research has shown that GET is actually harmful for patients with ME/CFS. The NIH published new guidance in 2022 to make sure that doctors are NOT recommending GET for patients with ME/CFS. Doing so would be dangerous. But OpenEvidence does not mention this new guidance because it is relying on outdated information. I flagged this issue with OpenEvidence but they did not correct their AI. They are spreading misinformation that is harmful to patients. If a doctor recommends GET to an ME/CFS patient, the patient will get significantly worse and then the doctor is going to face serious liability for endorsing incorrect treatments.