Conference and Colloquium Videos

Invest in ME Research international conferences are CPD-accredited events presenting current biomedical and clinical research on Myalgic Encephalomyelitis from leading international researchers and clinicians. Held annually since 2006, with interruptions only during the Covid-19 pandemic, the conferences provide a forum for the exchange of knowledge and the development of new collaborations.

Conference and colloquium recordings form an educational resource that contributes to the global evidence base on ME and supports a growing international research network.

Clinical Guidelines for ME

Clinical guidelines for Myalgic Encephalomyelitis are essential for enabling early, accurate diagnosi and appropriate management of this often profoundly disabling condition. Because ME is diagnosed primarily by exclusion, and no definitive biomarkers exist, standardised guidance is critical. Guidelines help doctors recognise core symptoms, such as post-exertional malaise, exclude other causes, and provide tailored care plans that prioritise energy management, symptom relief, and avoiding interventions that may cause harm, such as graded exercise therapy.

Without such guidelines, patients may experience delayed support, stigma, and worsening health outcomes, while clinicians lack the tools to deliver evidence-based care that improves quality of life.

The charity previously distributed earlier Canadian guidelines in the UK. More recent International Consensus Criteria (ICC) guidelines are now freely available online.

A variety of other guidelines exist internationally, reflecting ongoing differences in approach and the continuing need for standardised, evidence-based recommendations.

Educational Resources and Information

Invest in ME Research produces and supports a range of accessible educational materials for patients, carers, clinicians, and researchers. These resources provide accurate, evidence-based information, supporting understanding, awareness, and informed care.

Sharing accurate information and raising awareness of ME complements the charity’s educational resources, helping clinicians, researchers, and the public understand the condition and the evidence base for effective care.

A full library of articles, leaflets, and journals is available on the charity’s library page.

European Collaboration and Research Initiatives

Invest in ME Research has facilitated the establishment of vital links across Europe, connecting UK biomedical research with leading European researchers, and strengthening connections among researchers throughout Europe. These partnerships foster collaboration, share clinical insights, and coordinate multinational studies, accelerating progress on ME.

The importance of European collaboration was highlighted by the Pan-European ME Patient Survey, which gathered responses from over 11,000 individuals. The survey documented core aspects of the disease, including severity levels, diagnostic delays, illness trajectories, healthcare support, therapy experiences (noting positive outcomes for pacing and negative outcomes for GET/CBT as cure), and sources of support such as family or peer networks. Country-level comparisons provide valuable insights into variations in patient experience across Europe.

This evidence equips clinicians, educators, and policymakers with a clear understanding of disease patterns and management approaches, supporting training and raising awareness of ME as a profoundly disabling condition that continues to be under-recognised and often mismanaged.

Invest in ME Research remains focused on establishing high-quality biomedical research into ME, providing the evidence needed to inform clinical practice, education, and policy development.

FUNCAP - Assessing FUNctional CAPacity

FUNCAP is a validated self-report questionnaire for assessing functional capacity in Myalgic Encephalomyelitis, focusing on activity limitations caused by post-exertional malaise (PEM) and energy constraints. It is available in two versions: FUNCAP55 (detailed, 55 items) for diagnostic or benefits assessments, and FUNCAP27 (concise, 27 items) for clinical monitoring. The questionnaire covers domains such as personal care, mobility, concentration, and sensory issues, with scores from 0 (no limitation) to 6 (severe).

Clinicians can use FUNCAP pre-consultation or longitudinally to quantify impairments, monitor pacing strategies, or evaluate interventions. The tool integrates into research and telemedicine settings, avoiding the floor or ceiling effects of generic instruments. FUNCAP is freely available online in multiple languages under a Creative Commons licence, supporting clinical assessment, disability evaluation, and research.

Researchers supported through Invest in ME Research at the Norwich Centre contributed to FUNCAP’s development, and the tool has been described in a peer-reviewed publication It provides patient-centred data that illustrates the impact of PEM in everyday life—such as post-activity crashes—challenging misconceptions such as deconditioning. It is also used in education, policy briefs, and awareness initiatives to inform clinicians and researchers about the realities of living with ME and to support evidence-based management strategies.

YEMERG* Early-career workshops - Building the Future

In 2018 Invest in ME Research introduced the “Thinking the Future” workshops to support young and early-career researchers interested in biomedical research into ME. These meetings provided mentoring, networking and collaboration opportunities alongside the main colloquiums and conferences, helping to secure the next generation of ME researchers.

Following the pandemic, the initiative was then developed into Young EMERG, the early-career arm of the European ME Research Group (EMERG), further embedding early-career scientists within a strong international research community.