Table of contents

This issue of the ME Global Chronicle contains articles on the following subjects:

Severe ME
ME & children
ME & CBT/GET
Grassroot
ME-news from several countries
News from several organizations
News from several authorities
Petitions
Current ME-research
Events
and a poem to conclude with

The magazine is not intended to be read in its entirety by all: just choose the article you’d like to read below. At the bottom of each article you can navigate back to this Table of contents.

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Advices, questions and comments and contributions to the December 2022-issue can be sent at any given moment, but before December 1, 2022 to contribute@let-me.be

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From the editors
Disclaimer
Colofon                                                                                             

Severe ME

The Invisible Ones – On Severe ME/CFS 
The Reality of ME – in pictures 
Always glorious – Whitney Dafoe
A Golden Hour Selfie – Anil van der Zee
Life between hope and fear – Marieke Suur
Clinicians Can Help People With Severe ME/CFS, Even Unseen – Miriam Tucker
Thought scramble – Leon

ME & children

About ME – short impressive film of an 11-year old ME-patient
Abusive court procedures in France: children and adolescents at risk – MM France
Activity measurement in pediatric chronic fatigue syndrome – Jason et al. 
Cytokine network analysis in a community-based pediatric sample of patients with myalgic encephalomyelitis/chronic fatigue syndrome – Jason et al. 

ME & CBT/GET

If you feel like sharing your experiences on the detrimental effects of overexertion, please mail them to contribute@let-me.be

The BPS-Expertise Center – cartoon Djanko   
Toward a critical psychology of MUS, part 1 – Jo Hunt
ME-Experiences with exertion – 3 cases from the Isle of Man

Grassroot

Retha Viviers – a tribute to a monument
Ten years on – somewhere towards the end – Valerie Eliot Smith  
The Why – review of Hillary Johnson’s new book by Alison May 
Marjolein vs. The Mangrove – a fight against the Dutch healthcare system – Rob O’Brien
ME and My List – Bill Clayton
An emergency solution which is no solution – interview with ME-patient Mieke van Rheenen
What do I miss by being sick? – Min of Meer
On Healthcare Hubris – Joanne Hunt
Better for ever – Linda Schoemaker
My life with ME: short videos about how it feels  – Santana Hagedorn
Smile for ME – Alice  
Hope Weaver & Freedom with a Catch – Christina Baltais
New video: What is ME/CFS? – Broken Battery
In the World – Jennie Spotila
Childless through Chronic Illness – Anna Redshaw
Silence from Frontiers on financial conflict of interest in publications – Nina Steinkopf

News from

Australia
Austria
Belgium
Czechia
Denmark
France
Germany
Iceland
Ireland
Isle of Man
Italy 
The Netherlands
New Zealand
Northern Ireland
Norway
South Africa
Spain 
Sweden
Switzerland
United Kingdom

News from

AMMES
Invest in ME Research 
MEAdvocacy
ME International
ME Research UK 
NCNED 
Open Medicine Foundation 
Physios for ME
Smile for ME

News from the following authorities

DWP (UK)
DWP increases automatic extension of existing PIP awards by up to 12 months

NICE (UK)
MEA writes to Toby Sanders

WHO (global)
Coding the ME-diagnosis in the USA changes on October 1, 2022

ZonMw (the Netherlands)
Update biomedical research program

Calls & Petitions  – please vote or participate and share!

Norway: Course of illness survey 2022

Australia
Denmark Establish a 10 years ME-research program (deadline  December 31, 2022)
Germany BC007 Chance of a cure for millions of suffering people (deadline unknown)
The Netherlands deadline October 15, 2022
New Zealand closed on August 29, 2022 
Northern Ireland no deadline 
United Kingdom no deadline
United States of Amerika no deadline 

Science/research

Comparison of the Degree of Deconditioning in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients with and without Orthostatic Intolerance – (Linda) M.C. van Campen, MD; Frans C. Visser, MD 

How ME/CFS Research Can Provide New Insights Into Long COVID – Perkins & Jason

Pre-illness data reveals differences in multiple metabolites and metabolic pathways in those who do and do not recover from infectious mononucleosis – Jason et al.

Pathophysiology of exercise intolerance in ME/CFS & long COVID – Systrom

Phenotypic characteristics of peripheral immune cells of Myalgic encephalomyelitis/chronic fatigue syndrome via transmission electron microscopy: A pilot study –  Jahanbani, Davis, Snyder et al.

Clinical Characteristics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosed in Patients with Long COVID – Tokumasu et al.

Inflammations in the brain in ME – Prof. Jarred Younger

No replication of previously reported association with genetic variants in the T cell receptor alpha (TRA) locus for ME/CFS – Mella, Fluge, Saugstadt, Strand et al.

Survey of Anti-Pathogen Antibody Levels in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Levine, Hanson et al.

Lessons to help assess comorbid medical conditions – Jason et al.

Activity monitoring and patient-reported outcome measures in ME/CFS patients – Mella & Fluge et al.

Events

IACFS/ME Conference, July 27-20, 2022 – a presentation
Finland  – International Conference on Long Covid & ME/CFS, October 7 & 8, 2022
Northern Ireland  – Annual Conference and Exhibition 2022, October 19 & 20, 2022
Norway – CFS/ME Research Conference 2022, November 21 & 22, 2022
reMEmber conference – November 19, 2022 
Sweden – The many faces of the disease, October 12 & 13, 2022

A poem to conclude with

The Sailing Boat – Lavinia Capogna