Severely Overlooked by Science Links to Papers on MERUK Website: Part One and Part Two

Purpose: This report, created by MERGE (now ME Research UK) and The 25% ME Group, shines a spotlight on the lack of scientific research focused on the most severely ill Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients. It explores existing gaps, shares current findings, and calls for urgent attention to this often invisible population.

Key Points:

1. Severe Illness Neglected in Research
   • ME/CFS is significantly under-researched compared to other chronic illnesses, with an even smaller proportion of studies addressing the severely ill (e.g., housebound or bedbound patients).
   • Researchers acknowledge the logistical difficulties of involving severely ill patients in studies, but the lack of effort is described as a “scandalous” oversight given the severity and prevalence of these cases.
2. Key Findings from Existing Studies
   • Specialist Hospital Programmes: Studies show that severely affected patients can benefit from tailored inpatient programs, though outcomes vary widely. For example, one survey reported that 46% of patients received a new diagnosis instead of ME/CFS, and mood and quality of life often improved after hospitalization.
   • Cardiac Function Research: A study found lower cardiac output in severely ill ME/CFS patients, correlating with post-exertional fatigue and other symptoms.
   • Long-term Outcomes: Prognosis studies indicate that full recovery is rare among severely ill adults, though children have a better outlook.
3. The FINE Trial and Controversies
   • The Fatigue Intervention by Nurses Evaluation (FINE) trial, funded by the UK Medical Research Council, is scrutinized for its focus on “pragmatic rehabilitation” aimed at altering beliefs and behaviors. Critics argue this approach is not promising and diverts resources from biomedical research into ME/CFS’s biological underpinnings.
   • Concerns about the trial’s design, such as limited attention to patients’ physical symptoms, are emphasized.
4. Urgent Need for Biomedical Research
   • Despite increasing evidence for ME/CFS as a neuroimmune condition, the severely ill remain overlooked in clinical and laboratory studies. The report calls for epidemiological investigations and more focused biomedical studies.
5. Community-Based Surveys
   • Surveys by groups like the 25% ME Group reveal widespread dissatisfaction with treatments such as Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET), with many reporting worsened symptoms.
   • The surveys provide insight into the lived experiences of severely ill patients but face challenges in gaining acceptance from the wider medical community due to methodological concerns.
6. Proposals for Change
   • Advocates for a national epidemiological investigation to understand the prevalence and impact of severe ME/CFS.
   • Emphasizes the need for validated outcome measures and collaboration between patient advocacy groups and academic researchers to ensure credible data.

Target Audience:

• Healthcare Professionals and Researchers: Those aiming to address the gaps in ME/CFS research, particularly for severely ill patients.
• Advocates and Patients: Stakeholders pushing for better recognition and resources for the most severely affected.
• Policymakers and Funders: Decision-makers allocating research funding and shaping healthcare approaches for ME/CFS.

Overall Outcome: The report calls for urgent action to address the research neglect faced by severely ill ME/CFS patients. By prioritizing biomedical research and collaboration, it argues that meaningful progress can be made toward understanding and alleviating the burden of this debilitating condition.