Studies.

Please See the Whole Patient A Patient-Led Educational and Advocacy Framework for Neuro-EDS, Complex Craniospinal Conditions, ME/CFS, and Trauma-Informed Care

Patient-led educational and advocacy framework · not original research

17 September 2026 · Elisha Veesenmeyer · Zenodo

Personal perspective by Heike Sachtleben

This publication finally calls for what should long have been standard in medicine: an interdisciplinary view of interconnected multisystem diseases such as ME/CFS, Ehlers-Danlos syndrome, POTS and MCAS, taking their complex relationships into account. Had this approach been established decades ago, much suffering and preventable deaths might have been avoided.

Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome

Published

21 February 2024

Authors

Brian Walitt et al.

Journal

Nature Communications

Study design

Exploratory case-control study

An intensive study of 17 people with post-infectious ME/CFS and 21 healthy controls examined nervous system, immune and metabolic functions.

Context and limitations: A small, selected group; interpretation of some findings is scientifically disputed. A formal critique is linked.

DOI: 10.1038/s41467-024-45107-3

Scientific critique / Matters Arising ↗

Deficient butyrate-producing capacity in the gut microbiome is associated with bacterial network disturbances and fatigue symptoms in ME/CFS

Published

8 February 2023

Authors

Cheng Guo et al.

Journal

Cell Host & Microbe

Study design

Observational study · multi-omics

Researchers found gut microbiome differences and reduced butyrate-producing capacity in 106 people with ME/CFS compared with 91 healthy controls.

Context and limitations: These associations establish neither a cause of the illness nor the effectiveness of a treatment targeting them.

DOI: 10.1016/j.chom.2023.01.004

B-Lymphocyte Depletion in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Randomized, Double-Blind, Placebo-Controlled Trial

Published

2 April 2019

Authors

Øystein Fluge et al.

Journal

Annals of Internal Medicine

Study design

Randomised, double-blind, placebo-controlled trial

In a trial involving 151 patients, B-cell depletion with rituximab did not produce clinical improvement compared with placebo.

Context and limitations: An important negative treatment result: earlier encouraging findings were not confirmed in this controlled trial.

DOI: 10.7326/M18-1451

Cytokine signature associated with disease severity in chronic fatigue syndrome patients

Published

31 July 2017

Authors

Jose G. Montoya et al.

Journal

PNAS

Study design

Cross-sectional case-control study

Immune signalling molecules were examined in 192 patients and 392 healthy controls; 17 cytokines correlated with disease severity.

Context and limitations: Correlation does not establish causation or, by itself, a clinically validated diagnostic test.

DOI: 10.1073/pnas.1710519114

Metabolic features of chronic fatigue syndrome

Published

29 August 2016

Authors

Robert K. Naviaux et al.

Journal

PNAS

Study design

Exploratory metabolomics case-control study

A metabolomics study of 45 patients and 39 healthy controls found differences across several metabolic pathways.

Context and limitations: Exploratory findings from a small sample do not establish a generally usable diagnostic test. The published correction is linked.

DOI: 10.1073/pnas.1607571113

Published correction ↗