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From the Editors

Colofon

Inquiry: has ME a psychological cause?  

Severe ME

The Invisible Ones – On Severe ME/CFS

Trapped in the dark: How chronic fatigue syndrome derailed a NJ musician’s life – Gene Myers

The Reality of ME – in pictures

In the Dark – Mascha Delena 

And how was your stormy Friday? – Cheryl Ruzzo 

Bikini –Martine

Grassroot

New topic: Experiences with Graded Exercise Therapy – part 1: 3 cases from the Isle of Man

Connection: the key to changeProf. Leonard Jason

Nutrition, Diet and Hydrationfrom the IC Primer 

Is Norway going backwards?  – a notice against a planned LP-study – ME Foreldrene

The only Confinement for the Soul  – painting by Ilse Sjouke

Focus is the KeyProf. Leonard Jason

I’m A Doctor With Chronic Illness. Here Are 12 Things I Wish People Knew – Amy Stenehjem M.D.

About the risk of deterioration as a result of CBT treatment for longcovid patients report of a conversation with Prof. Dr. H. Knoop

Far from my bedIlse Sjouke & Martine Brandt

A manifesto for change: from strategy to inquiryValerie Eliot Smith

What It Means to Be Clinically Vulnerable in a World of Covid – Naomi Whittingham

The POTScast interviewsinterview with Colleen Steckel

When the show must go oncartoon Fennine

Mike’s Last One

Never give upCharlie Remiggio

ME in ItalyMike Harley interviewing 4 Italian ME-patients

Smile for ME

Let me fallFennine

Petitions

Austria  deadline unknown

Australia  deadline unknown

Europe  closed, read update 

Great-Britain no deadline

The Netherlands  deadline Nov. 2022 

Sweden   deadline May 12, 2022

United States no deadline 

Authorities

European Parliament
European PetitionEMEC 

NICE
Why the new UK NICE guidelines are good news for the ME community – Dr. Nigel Speight

ME/CFS is a medical condition: patients require a medically led service25% ME Group 

NIH
The first NIH ME Newsletter  

Science

A Natural History of Disease Framework for Improving the Prevention, Management, and Research on Post-viral Fatigue Syndrome and Other Forms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome –  Nacul et al.

Psychogenic Pseudosyncope: Real or Imaginary? Results from a Case-Control Study in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Patients – C. (Linda) M. C. van Campen and Frans C. Visser

SARS-CoV-2 infection and persistence throughout the human body and brain (under review) – comments by Dr. Amy Proal 

Evidence for Peroxisomal Dysfunction and Dysregulation of the CDP-Choline Pathway in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Che,  Brydges, Yu,  Price,  Joshi,  Roy,  Lee,  Barupal,  Cheng,  Palmer,  Levine,  Peterson,  Vernon, Bateman, Hornig,  Montoya,  Komaroff,  Fiehn, Lipkin

The Gut Microbiome in Myalgic EncephalomyelitisScheibenbogen et al

Lasting Immunological Imprint of Primary Epstein-Barr Virus Infection With Associations to Chronic Low-Grade Inflammation and Fatigue – Fevang, Wyller, Mollnes, Pedersen, Aprusten, Michelsen, Ueland & Otterdal

Submaximal Exercise Provokes Increased Activation of the Anterior Default Mode Network During the Resting State as a Biomarker of Postexertional Malaise in ME/CFS – Rakib U. Rayhan and James N. Baraniuk 

Impaired TRPM3-dependent calcium influx and restoration using Naltrexone in natural killer cells of myalgic encephalomyelitis/chronic fatigue syndrome patients – Natalie Eaton-FitchStanley Du PreezHélène CabanasKatsuhiko MurakiDonald Staines Sonya Marshall-Gradisnik

Predictors for Developing Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome following Infectious Mononucleosis – Leonard A Jason, Joseph Cotler, Mohammed F Islam, Jacob Furst, Ben Z Katz

A comparative study of valaciclovir, valganciclovir, and artesunate efficacy in reactivated HHV-6 and HHV-7 infections associated with chronic fatigue syndrome/myalgic encephalomyelitis – Dimitri Maltsev

Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID Part 3: “Energy System First Aid” for People With Postexertional Symptom Exacerbation – Todd Davenport, Staci Stevens, Jared Stevens, Mark Van Ness

Evaluating case diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): toward an empirical case definition – Conroy, Islam & Jason

Comparative Analysis of Extracellular Vesicles in Patients with Severe and Mild Myalgic Encephalomyelitis/Chronic Fatigue Syndrome  – Bonilla, Hampton, Marques de Menezes, Deng, Montoya, Anderson and Norris

Perspective: Drawing on Findings From Critical Illness to Explain Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – Dominic Stanculescu and Jonas Bergquist

The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials – Mark Vink, Alexandra Vink-Niese

What is ME, the diagnosis and management of ME: 3 free video’s – Dr. Eleanor Stein

Events

NIH Telebriefing, with Benjamin Natelson: March 28, 2022 3:00 – 4:00 PM EST

All-Party Parliamentary Group for M.E.: March 29, 2022 10:00-10:30 AM

EMEA European Roundtable:  8th April 14:00-16:30 CET 

Invest in ME 2022:  BRMEC May 18-19; Conference Day May 20  

IACFS conference 2022: July 27-29 9 AM to 5 PM and  9 AM to 3 PM.


News from

Australia

Austria 

Belgium 

Canada

Denmark

France 

Germany 

The Isle of Man 

Ireland

Italy 

The Netherlands

New Zealand

Norway 

Scotland

South-Africa

Sweden  

Switzerland

Organisations

 AMMES

ME International   

ME Research UK 

Open Medicine Foundation  

NCNED

PolyBio

IcanCME

Doctors with ME

Physios for ME

Years of Severe ME

Lost, or: Years of severe ME, poem Lavinia Capogna

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