OpenevidenceReviews of openevidence.com

OpenEvidence is using information that has been repeatedly scientifically disproven regarding ME and Graded Exercise Therapy. It is providing as fact incorrect information that is harmful to patients.

TrustPilot is untrustworthy. It is pushing dangerous rhetoric based on outdated and debunked information regarding ME/CFS, a neurological disorder with proven biological mechanisms at play. See "The Updated NICE Guidance Exposed the Serious Flaws in CBT and Graded Exercise Therapy Trials for ME/CFS" on NIH.gov The recently updated Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Mayo Clinic Proceedings Oct 2023 revised by leaders in the field of infectious disease based on recent peer reviewed research should be followed. It states: “ Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection.1 It is common and debilitating, with a prepandemic population-based prevalence of 1 to 2.5 million in the United States alone and a lower quality of life on average than multiple sclerosis, chronic kidney failure, or congestive heart failure.1-3 […] The pathognomonic symptom of ME/CFS is post-exertional malaise (PEM) or post-exertional symptom exacerbation. Post-exertional malaise is a flare in symptoms or the appearance of new symptoms after exertion, often manifesting after a characteristic 24-hour delay; however, 12 to 48 hours is common. Physical activity, cognitive overexertion, and sensory overload may all trigger PEM. It may take a person with ME/CFS days, weeks, or even months to return to previous baseline after PEM.1,7 It has been reported that patients with ME/CFS have impaired oxygen extraction on cardiopulmonary exercise testing in proportion to the severity of their symptoms, with both oxygen extraction and workload being decreased on the second day of 2-day cardiopulmonary exercise testing.8,9 This reflects and may in part explain the characteristic delay between exertion and PEM onset in ME/CFS and distinguishes patients from deconditioned and fatigued controls.8 However, we do not recommend routine exercise testing for patients with ME/CFS, given its propensity to generate PEM and to decrease functional capacity.“

The AI is promoting incorrect information with ME/CFS. It advices GET and CBT, while it has been proven multiple times that this is a dangerous treatment, and in fact making people worse. Therefor this application is actually promoting the worsening of symptoms and making people more sick. It's horrible that they are promoting a dangerous and harmful treatment 'as proven' while in face it's proven wrong!

It's using clearly outdated evidence. GET is not helping people with ME/Cfs in fact it is damaging.

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.