searchMECFS: An online, interactive platform to facilitate secondary use of biospecimens and associated research data from myalgic encephalomyelitis studies

Barnette, LeGrow, Ham, Illei, Giamberardino, Carnes, Brown

Abstract

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, debilitating disease affecting multiple body systems, with no established biomarkers for diagnosis or treatment.

This publication introduces searchMECFS, a free, interactive online platform developed by the Data Management and Coordinating Center (DMCC) of the ME/CFS Research Network, with funding from the National Institutes of Health.

Characterizing Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Symptom Burden, Functional Impairment, and Comparison With Adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) Study

Weaver, Regan, Issa, Fall, Chen, Lin, & Unger

Abstract

Objectives

To characterize the clinical, functional, and educational characteristics of adolescents with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and compare selected illness domains with adults in the Multi-Site Clinical Assessment of ME/CFS (MCAM) study.

British Psychological Society ME/CFS Guidelines: September 2026 Update

From the Editors

September 28, 2026

Table of contents

• Editorial
• Severe ME
• ME & children
• Grassroot
• News
  Organizations
  Countries
• Biomedical research
• Biopsychosocial
• Poem
• Info

List of contributors ME Global Chronicle 58

News from the USA

• Work accommodations
• The (USA) State-by-State Resource Directory

Myalgic Encephalomyelitis Research Lists Updated

Patient selection key to moving us forward

I have been trying to follow the science of Myalgic Encephalomyelitis (ME) since I caught the disease in August 1989. I have seen a LOT of research under various labels that may or may not have applied to me.

Research that MIGHT apply to me falls under the Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME) as well as ME/CFS labels. Because of this confusion it has been difficult to know what research is actually applicable to my case.

I’m done with medical abuse

Arnaud Denis, a 43-year-old French director and actor, passed away in Belgium on September 22, 2026. A few years ago, following surgery, he developed a very severe case of ME/CFS.

He chose to undergo euthanasia, leaving this message: “I would like you to stay in touch after my death. My illness is at a very advanced stage, and I have decided to end my life. My thoughts go out to all my brothers and sisters in this struggle”

On his fb-page he left an amazing account of his experiences with the French healthcare, which is as powerful as Emile Zola’s J’accuse…!

Because it was his express wish that, after his death, all the experiences he left behind be made public, we translated it into English.

How medical training promotes medical gaslighting

Medical gaslighting occurs when a medical professional wrongly downplays or dismisses a patient’s symptoms.

It can cause serious long-term harm: PTSD, loss of confidence in medical professionals, avoidance of needed medical care, loss of self-confidence and self-worth, and a loss of support and accommodations from family, friends and employers.