From the Editors
Disclaimer
List of Contributors
Severe M.E.
Supporting People with ME/CFS in Hospital – 25% ME Group
The Prison of M.E. – Anil van der Zee
A day in my life with severe to very severe ME – Anneke/ME-anderen
Severe ME Inquiry – APPG via 25% ME Group
The most severely ill patients with ME/CFS in Denmark – Peter la Cour
Severe and Very Severe ME/CFS – Broken Battery
On an adventure with my little son – Dascha van Beurden
M.E. & children
Save4Children
A history of disbelief – Colleen Steckel on an interview with Dr. Nigel Speight
My brother and Me – Mia
Millie McAinsh -an update
Children with ME taken into custody – part 2 – Dr. Nigel Speight
First German model station for severely affected children and young people
M.E. & biopsychological interventions
The Power of “Sorry” – Hillary Johnson
Decade old approach, relabelled as a new one by the Oslo Chronic Fatigue Consortium, is harmful and does not lead to objective improvement in ME/CFS or long Covid – Mark Vink and Alexandra Vink-Niese
We deteriorate by their treatment. What do they expect? Gratitude? – Nina Steinkopf
An ME inquiry? Not likely when a pillar of the psychologising establishment has access to the halls of power – Hannah Sharland
We’re awfully sorry.. – cartoon Djanko
Grassroot
Finding ME-ICC info in various languages – Colleen Steckel
ME/CFS-IOM is a clinical criteria, not a research criteria – Colleen Steckel
Blue Sunday 2024 – a retrospective and words of thanks – Anna Redshaw
Perspective – Martine Brandt
Assessment perils – Marieke Suur
Who is to blame for me sitting here today with double-amputated legs? – Merethe Jaquesson
Ever wondered what the best weapon would be for beating yourself round the head? – Emma
Bridging the gap between research, clinical practice and awareness – Bhanu Wahi-Singh
My GP Is Off Sick – Phoebe Boag
Walking 2500 km for ME research – Lee Colligan
The way out is in – Corina Duyn
Troubles – Ren
Petitions
#INSUREME! – Dutch Petition
Belgian Long Covid, ME/CFS, Lyme, POTS and Fibromyalgia patients ask for your help
Events
Unite to Fight – worldwide – May 15 & 16, 2024
International ME Conference Week 2024 – June 25-28
News
countries
Australia
Austria
Belgium
Brazil
Denmark
France
Germany
Italy
The Netherlands
New Zealand
Norway
Scotland
Serbia
Spain
Switzerland
organisations
AMMES
EMEC
Liegend Demo
MEadvocacy
ME Research UK
NCNED
Open Medicine Foundation
Physios for ME
PolyBio
Smile for ME
View from the Trenches of Myalgic Encephalomyelitis Workwell Foundation
authorities
CDC
Be Wary of Flawed Diagnosis Criteria for ME/CFS – prof. Leonard Jason
NICE
NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence – Barry, Kelley, Tan, Finlay
NIH
The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” – Jeannette Burmeister
and a Call to Action: Investigate and Retract the NIH Intramural ME Study
NINDS – Advancing Research on ME/CFS – Walter Koroshetz
NHS
NHS England Launches New E-learning Module on ME/CFS
ZonMw
The Dutch ZonMw researchprogram – from good to worse
Science/research
Understanding the pathophysiology of ME – Sylvia Iversen †
Interdisciplinary, collaborative D-A-CH (Germany, Austria and Switzerland) consensus statement concerning the diagnostic and treatment of myalgic encephalomyelitis/chronic fatigue syndrome – 33 authors from Austria, Germany and Switzerland
The German Multicenter Registry for ME/CFS (MECFS-R) – Hieber, Pricoco, Gerrer, Heindrich, Wiehler, Mihatsch, Haegele, Schindler, Donath, Christa, Grabbe, Kircher, Leone,Mueller, Zietemann, Freitag, Sotzny, Warlitz, Stojanov, Hattesohl
Results of a pan-European survey on ME/CFS – EMEA
Neuroinflammation, Pain, and Fatigue series of videos, Part 2 – Dr. Jarred Younger
Herpesvirus Infection of Endothelial Cells as a Systemic Pathological Axis in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Nunes, Kell, Pretorius
Epigenetic reprograming in myalgic encephalomyelitis/chronic fatigue syndrome: A narrative of latent viruses – Eirini Apostolou, Anders Rosén
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the biology of a neglected disease – Arron, Marsh, Kell, Asad Khan, Jaeger, Pretorius
Diverse immunological dysregulation, chronic inflammation, and impaired erythropoiesis in long COVID patients with chronic fatigue syndrome – Saito, Shahbaz, Osman, Redmond, Bozorgmehr, Rosychuk, Lam, Sligl, Cohen Tervaert, Elahi
Mitochondrial DNA Missense Mutations ChrMT: 8981A > G and ChrMT: 6268C > T Identified in a Caucasian Female with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) triggered by the Epstein-Barr Virus – Tang-Siegel, Maughan, Frownfelter, Light
Imbalanced Brain Neurochemicals in long COVID and ME/CFS: A Preliminary Study using MRI – Thapaliya, Marshall-Gradisnik, Eaton-Fitch, Eftekhari, Inderyas, Barnden
Heterogeneity in Measures of Illness among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Is Not Explained by Clinical Practice: A Study in Seven U.S. Specialty Clinics – Unger, Lin, Chen, Cornelius, Helton, Issa, Bertolli, Klimas, Balbin, Bateman, Lapp, Springs, Podell, Fitzpatrick, Peterson, Gottschalk, Natelson, Blate, Kogelnik, Phan, On Behalf Of The McAm Study Group
Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies – Annesley, Missailidi, Heng, Josev, Armstrong
Longitudinal cytokine and multi-modal health data of an extremely severe ME/CFS patient with HSD reveals insights into immunopathology, and disease severity – F. Jahanbani, Sing, Maynard, S. Jahanbani, J. Dafoe, W. Dafoe, Jones, Wallace, Rastan, Maecker, Röst, Snyder, Davis
ME/CFS-IOM is a clinical criteria, not a research criteria – Colleen Steckel
Finding ME-ICC info in various languages – Colleen Steckel
Successful Subcutaneous Immunoglobulin Therapy in a Case Series of Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Sjogren, Bragée, Britton
A Poem
A Teaspoon – Soul Treasures
The ME Global Chronicle 