~ editorial
~ severe ME
~ ME & children
~ grassroot
~ biopsychosocial
~ news from:
19 countries
5 charities
4 authorities
~ petitions
~ events
~ science/research
~ poem
From the Editors
Disclaimer
List of Contributors
Further information
Our Future…?– cartoon Djanko
Failings in the care of patients with Very Severe ME (VSME) – Dr. Nigel Speight
Welcome to Australia – about Alem Matthees, the Australian National Disability Insurance Scheme, prof. Andrew Lloyd – the Australian equivalent of among others Prof. Michael Sharpe & the aftermath of the PACE-trial.
The Living History of (severe) ME – Ingrid J. Jones FRSA FRSPH
The days with ME– Anil van der Zee
About Merryn – Clare Norton
On an adventure with my little son – Dascha van Beurden
M.E.: Lives devastated – and sufferers told it’s made up – Channel4 News
Failings in the care of patients with Very Severe ME (VSME) – Dr. Nigel Speight
About ME– – a short impressive film of an 11-year old ME-patient – Mascha Delena & family
Pediatric and adult patients with ME/CFS following COVID-19: A structured approach to diagnosis using the Munich Berlin Symptom Questionnaire (MBSQ) – Peo, Wiehler, Paulick, Gerrer, Leone, Viereck, Haegele, Stojanov, Warlitz, Augustin, Alberer, Hattesohl, Froehlich, Scheibenbogen, Jason, Mihatsch, Pricoco, Behrends
First German model station for severely affected children and young people
#LiegendDemo – impressive and unique
No suffering is equal – Laura de Vries
You know what… – David Putrino
Ill for 16 years – Martine Brandt
Reclaiming the Narrative: Finding the Real Me – Naomi Whittingham
No whistles to communicate… – Marie H. Curran
Crying – the Story of ME – Anneke Blom
Community’s preference for ICC and CCC case definitions – Colleen Steckel
Spread the love – Emma/Chronically Craptastic
Finding Me with M.E; my story so far – Ellie Mullis
Ten Years – Phoebe Boag
Perhaps, if… – Neenyah Ostrom
Friendship – Min of Meer’s Plein
When you doubt who’s more incapable to work – Fennine de Weerd
Long Covid and relationships – David Putrino
Invisible exertion – Christina Baltais
Until Justice is Done – Marieke Suur
Impossible Possibilities – Mascha Delena
Chronic fatigue syndromes: real illnesses that people can recover from (?) – The Oslo Chronic Fatigue Consortium & 52 authors, with introduction of ME Global Chronicle
Gaslighting kills – in response to a Swiss study
The Norwegian national competence service for CFS/ME is wrong – Frøydis Lilledalen
‘You don’t want to get better’: the outdated treatment of ME/CFS patients is a national scandal – George Monbiot
Why the psychosomatic view on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is inconsistent with current evidence and harmful to patients – Thoma, Froehlich, Hattesohl, Quante, Jason & Scheibenbogen
Almost 3 years ago… and yet still so up-to-date – George Monbiot
Inheriting discriminatory socio-political landscapes as ‘undeserving’ disabled people: The legacy of common health problems and the future for long COVID – Joanne Hunt
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
Countries
Australia
Austria
Belgium
Canada
Denmark
Finland
France
Germany
India
Ireland
Italy
Lithuania
The Netherlands
New Zealand
Norway
Northern Ireland
Portugal
Scotland
Sweden
Charities
ME Research UK
Nightingale Resarch Foundation
Open Medicine Foundation
Physios for ME
Smile for ME
Authorities
NIH
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome – 70 authors & 1 institute
Some reactions to the recently published NIH-study
Some reactions on the recently published study of the NIH – multiple sources
Perhaps if – Neenyah Ostrom
NIH Intramural “ME/CFS” study finally published: Not a study about myalgic encephalomyelitis – Colleen Steckel
Is chronic fatigue syndrome all in your brain? – Anthony L. Komaroff, MD
Michael VanElzakker on the NIH study – an interview with David Tuller
Alteration of effort preference driving PEM – Prof Todd Davenport
NICE
Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis – 51 authors, with short introduction of ME Global Chronicle
NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence – Peter Walter Barry, Kate Kelley, Toni Tan, Ilora Finlay, with short introduction of ME Global Chronicle
APPG – The APPG’s Annual General Meeting in Westminster
Dutch ZonMw – The € 28,5 million biomedical researchprogram
Petition to Save Millie’s life
Petition to Cochrane
Two updates
Australia: Harm caused to Myalgic Encephalomyelitis patients by GET & CBT. HELP put a stop to it!
Germany: BC007 NOW- Chance of a cure for millions of suffering people
Great Britain: Petition Demanding the creation of a new mechanism to report non-pharmaceutical treatment harms
The Netherlands: #InsureME! – Deadline July 2024
USA: #PwME4ICC demand US Health Agencies to recognize myalgic encephalomyelitis as defined by the ICC
NIH: Bethesda, December 12-13, 2023: A report of the Conference: Advancing ME/CFS Research: Identifying Targets for Potential Intervention and Learning from Long COVID – Miriam Tucker
1st Portuguese International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID – April 3-4, 2024, Lisbon
International Society of Magnetic Resonance in Medicine (ISMRM) conference – Singapore, May 3 to 9, 2024
Unite to fight – online Conference May 15 & 16, 2024
International ME Conference Week 2024, June 25-28, 2024
The Irish Talks – Dr Nigel Speight: May 7-15, 2024
Understanding the pathophysiology of ME – Sylvia Iversen †
Neuroinflammation, Pain, and Fatigue series of videos – Dr. Jarred Younger
Establishing a consensus on ME/CFS exclusionary illnesses – Jason, Ravichandran, Katz, Natelson & Bonilla
Subcortical and default mode network connectivity is impaired in myalgic encephalomyelitis/chronic fatigue syndrome – Inderyas, Thapaliya, Marshall-Gradisnik, Barth & Barnden
Immunosuppression In ME may underlie energy deficits that drive ME symptomology – Interview of Dr. Armin Alaedini by Bronc
Metabolomic and immune alterations in long COVID patients with chronic fatigue syndrome – Saito, Shahbaz, Luo, Osman, Redmond, Cohen Tervaert, Li, Elahi
Low-Dose Naltrexone improves post–COVID-19 condition Symptoms – Tamariz, Bast, Klimas , Palacio
Dry eye symptoms and signs in United States Gulf War era veterans with myalgic encephalomyelitis/chronic fatigue syndrome – Sanchez, Kim, Locatelli, Cohen, Cabrera, Aenlle, Klimas, O’Brien & Galor
A pilot study on the immune cell proteome of long COVID patients shows changes to physiological pathways similar to those in myalgic encephalomyelitis/chronic fatigue syndrome – Peppercorn, Edgar, Kleffmann & Tate
Similar Patterns of Dysautonomia in Myalgic Encephalomyelitis/Chronic Fatigue and Post-COVID-19 Syndromes – Ryabkova, Rubinskiy, Marchenko, Trofimov & Churilov
Microbes and Mental Illness: Past, Present, and Future – Bransfield, Mao and Greenberg
Single-cell transcriptomics of the immune system in ME/CFS at baseline and following symptom provocation –Tien Vu, Ahmed, Zhu, Hanson, Grenier, Grimson
Exploring the joint potential of inflammation, immunity, and receptor-based biomarkers for evaluating ME/CFS progression – Berkis, Svirskis, Krumina, Gravelsina, Vilmane, Araja, Nora-Krukle, Murovska
Investigating the Human Intestinal DNA Virome and Predicting Disease-Associated Virus-Host Interactions in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – Hsieh, Savva, Telatin, Tiwari, Tariq, Newberry, Seton, Booth, Bansal, Wileman, Adriaenssens, Carding
Remission of severe forms of long COVID following monoclonal antibody (MCA) infusions: A report of signal index cases and call for targeted research – K. Scheppke, Pepe, Jui, Crowe PhD h, E. Scheppke, Klimas, Marty
Worsening Symptoms Is Associated with Larger Cerebral Blood Flow Abnormalities during Tilt-Testing in ME/CFS – Van Campen, Rowe & Visser
Changing patterns of multimorbidity among patients with ambiguous diagnoses: The case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Bragée, Carlsson, Sjögren, Bertilson
Unravelling shared mechanisms: insights from recent ME/CFS research to illuminate long COVID pathologies – Annesley, Missailidis, Heng, Josev, Armstrong
The Head-Up Tilt Table Test as a Measure of Autonomic Functioning among Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Jason, McGarrigle, Vermeulen
Better Times – Lavinia Capogna
The ME Global Chronicle 