ME/CFS Evidence Browser — Classified Studies on Myalgic Encephalomyelitis

21–32 of 32 studies

E3 PreliminaryCohortPEM unclearCross-Sectional

Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome.

Nezamdoust, Bita, Ruel, Erin·Social science & medicine (1982)·2026

This study listened to people with severe ME/CFS and their caregivers through their social media posts to understand how their condition affects their lives. The researchers found that people with severe ME/CFS face major challenges: they are often not believed by doctors and society, they experience deep isolation, and they struggle to access care and disability support. The study shows that this illness is neglected and that urgent changes are needed to recognize and help this population.

Severe ME

E3 PreliminaryCohortPEM requiredCase-Control

Significant aggravation of pre-existing myalgic encephalomyelitis/chronic fatigue syndrome following proton beam therapy for sphenoid wing meningioma: case report.

Fischer, Christian, Seidlitz, Annekatrin, Krause, Mechthild·Strahlentherapie und Onkologie : Organ der Deutschen Rontgengesellschaft ... [et al]·2026

This is a single case report of a 46-year-old woman with ME/CFS whose condition severely worsened after receiving proton beam radiation therapy for a brain tumor. Over months following treatment, she went from being ambulatory to completely bedridden, with worsening fatigue, pain, dizziness, and cognitive problems. The report suggests that radiation may have triggered this deterioration, but it remains unclear whether this outcome would occur in other ME/CFS patients undergoing similar treatment.

Pain and SensitizationSevere MEEnergy MetabolismCognitive Impairment

E3 PreliminaryGuidelinePEM requiredGuideline

[Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care].

Hermisson, Joachim, Schreiner, Claudia, Weichselbaumer, Stefanie et al.·Wiener medizinische Wochenschrift (1946)·2026

This guide describes practical home-care approaches for people severely affected by ME/CFS, developed by combining advice from patients and family caregivers with input from nursing, physiotherapy, and medical professionals. The guide addresses how to adjust daily care activities—such as nutrition, hygiene, and communication—to avoid overexertion and post-exertional malaise (PEM). However, because this is a compiled expert consensus rather than a systematic trial, the strength of evidence for each recommendation remains unclear.

Severe MEInterventionsPost-Exertional Malaise

E3 PreliminaryReviewPEM unclearReview-Narrative

Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Syed, Abu Mohammad, Karius, Alexander K, Ma, Jin et al.·Physiology (Bethesda, Md.)·2025

This review examines how mitochondria—the parts of cells that produce energy—may not be working properly in ME/CFS patients. The authors suggest that problems with energy production in cells could explain why people with ME/CFS feel severely exhausted after physical activity. They also note that similar energy problems appear in long COVID, which suggests both conditions may share a common underlying cause.

Severe MELong COVID OverlapPost-Exertional Malaise

E3 PreliminaryPEM unclear

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.

Krabbe, Silje Helen, Bjorbækmo, Wenche Schrøder, Mengshoel, Anne Marit et al.·Nursing inquiry·2024

This study explored how young women experienced being severely ill with ME/CFS during their teenage years, looking back from a point where they had recovered or improved. Researchers interviewed 13 women aged 16-29 about their memories of being bedridden and isolated. The study found that patients often felt caught between wanting company and needing to be alone, experienced their bodies as fragile and unstable, endured long periods of darkness and isolation, and eventually had to make sense of these painful memories as they recovered.

Severe ME

E3 PreliminaryCommentaryPEM requiredEditorial

[Facts and myths about chronic fatigue syndrome].

Fink, Per, Skjernov, Mathias, Petersen, Line Kirkeby et al.·Ugeskrift for laeger·2022

This article discusses updates to ME/CFS treatment guidelines and challenges some common beliefs about the condition. The authors argue that new guidelines recommend against intense exercise programs for severely ill patients and suggest energy management instead, but they question whether the evidence supporting these changes was properly evaluated. They raise concerns about how the new guidelines were developed and what type of evidence was considered.

Severe MEPost-Exertional Malaise

E3 PreliminaryDiagnosticPEM unclearMethods-Paper

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research-A Research Model.

Baxter, Helen·Healthcare (Basel, Switzerland)·2022

Most ME/CFS research has only included patients well enough to visit clinics, which means the most severely affected patients—those who are housebound or bedbound—have been left out. This study showed that very severely affected patients can participate in research if researchers make practical adjustments, like allowing phone or text responses instead of requiring in-person visits. By reaching out directly to these patients, researchers were able to gather their important experiences and insights.

Severe ME

E3 PreliminaryCohortPEM unclearObservational

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Strassheim, Victoria, Newton, Julia L, Collins, Tracy·Healthcare (Basel, Switzerland)·2021

This study listened to five people living with the most severe form of ME/CFS—those who are bedbound, housebound, or wheelchair-dependent—to understand what their daily lives are really like. By interviewing them and analyzing their stories, researchers found three main themes: how they experience living with the illness, the major challenges it creates, and how they try to manage their condition. This research helps doctors and scientists better understand the needs of the most severely affected patients.

Severe ME

E3 PreliminaryCohortPEM unclearCase-Control

Life-Threatening Malnutrition in Very Severe ME/CFS.

Baxter, Helen, Speight, Nigel, Weir, William·Healthcare (Basel, Switzerland)·2021

This study describes five patients with very severe ME/CFS who developed life-threatening malnutrition because doctors delayed providing tube feeding support. Some severely affected patients cannot eat or drink normally due to swallowing difficulties, severe stomach problems, or being too ill to feed themselves. The research shows that doctors sometimes mistakenly blamed psychological factors instead of recognizing nutrition problems as a direct result of the disease, leading to dangerous delays in life-saving treatment.

Severe ME

E3 PreliminaryReviewPEM requiredReview-Narrative

COVID-19 and post-infectious myalgic encephalomyelitis/chronic fatigue syndrome: a narrative review.

Poenaru, Sonia, Abdallah, Sara J, Corrales-Medina, Vicente et al.·Therapeutic advances in infectious disease·2021

Some people who recover from COVID-19 continue experiencing prolonged symptoms like fatigue, difficulty breathing, and brain fog for months afterward. These lingering symptoms are remarkably similar to ME/CFS, a chronic illness characterized by severe fatigue that worsens with activity. While COVID-19 could potentially trigger ME/CFS in some people, researchers currently don't have enough evidence to confirm this connection.

Severe MEPost-Exertional Malaise

E3 PreliminaryReviewPEM unclearReview-Narrative

The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations.

Newton, Faith R·Healthcare (Basel, Switzerland)·2021

This article examines how severe ME/CFS affects children's ability to attend school and learn. Many severely ill children are confined to bed or home and cannot attend regular classes. The study suggests that schools are not providing adequate support for these students and proposes new educational approaches and resources that could help them continue learning despite their illness.

Severe ME

E3 PreliminaryCohortPEM unclearCase-Control

Severe ME in Children.

Speight, Nigel·Healthcare (Basel, Switzerland)·2020

This study looks at severe ME/CFS in children who are so sick they can barely leave their homes or beds. The doctor who wrote it shares real patient stories to show how the illness presents and how to manage it properly. The study highlights an important problem: many doctors don't recognize or diagnose ME/CFS, and there's very little information available about the most severely affected patients.

Severe ME

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Evidence Atlas

Evidence browser

Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome.

Significant aggravation of pre-existing myalgic encephalomyelitis/chronic fatigue syndrome following proton beam therapy for sphenoid wing meningioma: case report.

[Transdisciplinary Expert Statement: care guide for people severely affected by ME/CFS in home-based care].

Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

A suffering body, hidden away from others: The experience of being long-term bedridden with severe myalgic encephalomyelitis/chronic fatigue syndrome in childhood and adolescence.

[Facts and myths about chronic fatigue syndrome].

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research-A Research Model.

Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.

Life-Threatening Malnutrition in Very Severe ME/CFS.

COVID-19 and post-infectious myalgic encephalomyelitis/chronic fatigue syndrome: a narrative review.

The Impact of Severe ME/CFS on Student Learning and K-12 Educational Limitations.

Severe ME in Children.

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