From the editors
December Update
Disclaimer
List of Contributors
Further information
Proem: An Unknown Country – Lavinia Capogna
Malnutrition in severe and very severe ME – 25% M.E. Group
Severely Affected Patients according tot he current guidelines of the CDC
The Toll of Decline – MEnens
D-I-E – Sabine Hermisson
The Words That Saved Me– Sarah Mozer
Complaint – Marieke Suur
The Legacy of Heidi Utz – Heidi Utz †
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire – Kristian Sommerfelt, Trude Schei , Katharine A Seton , Simon R Carding
Investigating Antibody Reactivity to the Intestinal Microbiome in Severe ME: A Feasibility Study – Katharine A. Seton, Marianne Defernez, Andrea Telatin, Sumeet K. Tiwar, George M. Savva, Antonietta Hayhoe, Alistair Noble, Ana L. S. de Carvalho, Steve A. James, Amolak Bansal, Thomas Wileman and Simon R. Carding
Save4Children
I still desperately want to live – Laura
Children with ME taken into custody – part 1 – Dr. Nigel Speight
About ME – a short impressive film of an 11-year old ME-patient – Mascha Delena & family
Families of children with ME and their encounters with the health and welfare systems – ME Foreldrene
Violation of the Dutch Code of Ethics for Psychologists with current CFS guideline-part 2; M. Bloks
ME/CFS & LC Breaking News: Patient, Heal Thyself – Neenyah Ostrom
Outdated hypothesis presented as “news” at the University of Oslo – Nina Steinkopf
Quackery against ME/CFS in New Zealand – Nina Steinkopf
Breaking news: PEM is just Health Anxiety – @ABrokenBattery
The preachers of hope – when faith in method trumps faith in man – Frøydis Lilledalen
On gaslighting – interview with Cassandra Helfer. Board member of the Swiss ME/CFS Association
Even When Christmas Is Too Much, You Still Have Value – Naomi Whittingham
We are standing on the shoulders of giants – Tom Molmans
ME/CFS is an umbrella term: is fruit an apple? – Colleen Steckel
Life together did not turn out as we thought – Eirik Kristoffersen
Two gifts from heaven – Robert Foreman
Missing the little things – Phoebe Boag
I f*cked up. And that’s okay – Emma/Chronically Craptastic
Power – Sarah Mozer
Lucky you don’t have MS – Martine Brandt
When after half a lifetime of chronic illness… – cartoon Fennine
My life is completely perfect, how’s yours? – painting Mascha Delena
Struggling to Find The Words & A Season of Letting Go – Christina Baltais
I would love so much – Anneke/ME-anderen
Nursing Home life – NHI Award nomination and shortlist – Corina Duyn
The smartest person in the room – kudos Joey Narciso
Footprints in the sand – Anna Redshaw
Long Covid and ME/CFS- Are they the same condition? – Charles Shepherd, with cartoon Djanko
Countries
Australia
Austria
Belgium
Canada
Denmark
France Germany
India
Ireland
Isle of Man
Italy
Japan
Lithuania
The Netherlands
New Zealand
Norway
Portugal
Russia
Scotland
Spain
Sweden
Switzerland
Taiwan
Organizations
AMMES
DecodeME
EMEA
European ME Coalition
Hummingbird Foundation
Invest in ME Research
ME Research UK
NCNED
Open Medicine Foundation
Physios for ME
Polybio
Smile for ME
View from the Trenches of Myalgic Encephalomyelitis
Workwell Foundation
Authorities
All-Party Parliamentary Group, UK: meeting on Severe ME
CDC: U.S. CDC & Myalgic Encephalomyelitis: Do Better! – Colleen Steckel
DHSC of the UK: Questions to the DHSC & Update delivery plan
Dutch ZonMw: Continued protests against allocation of research grant
NIH/NINDS: Schedule ME/CFS Research Roadmap webinars
ZIN Netherlands : A new Dutch ME/CFS guideline: how and when?
1st International conference in Portugal, April 3-4, 2024.
International ME Conference Week 2024, Invest in ME Research UK – 25-28 June 2024
2nd international ME/CFS conference of the Charité Fatigue Center, Germany – May 11 & 12, 2023
RME’s conference “The Hidden Disease”, Sweden – October 11, 2023
International ME/CFS and long COVID RID Conference, King’s Cliff, Australia –November 9-11, 2023
Understanding the pathophysiology of ME– Sylvia Iversen †
Creating a diagnostic test for ME – ME Association & ME Research UK
Has the Prusty lab figured out why some people get chronic illnesses? – Neenyah Ostrom
What Long COVID investigators can learn from four decades of ME/CFS research – Jason e.a.
‘We have no services for you… so you have to make the best out of it’ – Line Melby, Roshan das Nair
Evaluation of viral infection as an etiology of ME/CFS: a systematic review and meta-analysis – Jae-Hyun Hwang, Jin-Seok Lee, Hyeon-Muk Oh, Eun-Jung Lee, Eun-Jin Lim, Chang-Gue Son
Typing myalgic encephalomyelitis by infection at onset: A DecodeME study – 26 authors
A prospective randomized, double-blind placebo-controlled study to evaluate the effectiveness of neuroprotective therapy using functional brain MRI in patients with post-covid chronic fatigue syndrome – M Tanashyan, S Morozova, , A Raskurazhev , P Kuznetsova
Using MRI to assess brain neuroinflammation and the lymphatic system in ME/CFS – Dr Zack Shan
Potential diagnostic test for ME/CFS based on white blood cell analysis – Karl J. Morten et al.
The largest map of the human brain ever made – Nature
Physical exertion worsens symptoms in patients with post-COVID condition – Breedveld, Charlton, Appelman, Biere-Rafi, Jansse, Van Vugt & Wüst
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire – Kristian Sommerfelt, Trude Schei , Katharine A Seton , Simon R Carding
Investigating Antibody Reactivity to the Intestinal Microbiome in Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A Feasibility Study – Carding et all.
HERV activation segregates ME/CFS from fibromyalgia and defines a novel nosological entity for patients fulfilling both clinical criteria – Giménez-Orenga, Martín-Martínez, Nathanson, Oltra
A comprehensive overview of the publications that have resulted from research funded by Open Medicine Foundation
Predicting Myalgic Encephalomyelitis/Chronic Fatigue Syndrome from Early Symptoms of COVID-19 Infection – Chelsea Hua, Jennifer Schwabe, Leonard A. Jason, Jacob Furst and Daniela Raicu
People With Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Exhibit Similarly Impaired Vascular Function – Marie Mclaughlin, Nilihan E.M. Sanal-Hayes, Lawrence D. Hayes, Ethan C. Berry, Nicholas F. Sculthorpe
Catalytic Antibodies May Contribute to Demyelination in ME/CFS – Michael Anthony Jensen, Miranda Lee Dafoe, Julie Wilhelmy, Layla Cervantes, Anna N Okumu, Lucas Kipp, Mohsen Nemat-Gorgani, Ronald Wayne Davis
Worsening Symptoms Is Associated with Larger Cerebral Blood Flow Abnormalities during Tilt-Testing in ME/CFS – C. (Linda) M. C. van Campen, Peter C. Rowe and Frans C. Visser
Focus on post-exertional malaise when approaching ME/CFS in specialist healthcare improves satisfaction and reduces deterioration – Marjon E. A. Wormgoor & Sanne C. Rodenburg
The ME Global Chronicle 