The COVI workshop on Long Covid: a brief summary

On 9 March, a workshop on Long Covid was held in the European parliament. Various invited experts and Members of Parliament highlighted a link between ME/CFS and Long Covid. In February, the European Parliament’s Special Committee on COVID-19 (the COVI Committee) published a draft report on lessons learned from the pandemic and recommendations for theContinue reading “The COVI workshop on Long Covid: a brief summary”

The scoping study has finally been published

The long-awaited scoping study has finally been published. This document defines “high-burden under-researched medical conditions” that will be targeted in future calls of the Horizon Europe research program. ME/CFS made the list but so did a lot of other medical conditions. This article provides a brief overview of the main results. Background and introduction TheContinue reading “The scoping study has finally been published”

Horizon Europe calls 2023-2024

On 6 December 2022, the European Commission approved the second work program of Horizon Europe for the years 2023-2024. In this article, we highlight several grants that may be relevant for scientists studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Introduction: what is Horizon Europe? Horizon Europe is the big research and innovation program of the EuropeanContinue reading “Horizon Europe calls 2023-2024”

The European call on ME/CFS: an overview and what follows next

More than 2 years after the adoption of the ME/CFS resolution, the European Commission has finally taken an initiative to support research on ME/CFS. The Horizon Europe work program 2023-2024 includes a call on “tackling high-burden for patients, under-researched medical conditions.” This call gives ME/CFS researchers improved opportunities to compete for a big European grantContinue reading “The European call on ME/CFS: an overview and what follows next”

Press release: EU supports research on poorly understood diseases

Thanks to the dedicated work of Belgian Member of the European Parliament (MEP) Pascal Arimont and colleagues, Horizon Europe will provide new funding opportunities for research on high-burden, under-researched diseases. While modern medicine has produced many spectacular breakthroughs, some diseases remain poorly understood to this day. These illnesses often cause chronic pain and debilitating fatigueContinue reading “Press release: EU supports research on poorly understood diseases”

A new response from the EU Commission

In February 2022, a group of Members of the European Parliament (MEPs) headed by Pascal Arimont wrote several letters on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the European Commission. This article provides an overview of the Commission’s response to these letters. The MEPs, who form the parliamentary interest group for ME/CFS, highlighted the lack ofContinue reading “A new response from the EU Commission”

World ME Alliance calls on WHO Director General to recognize ME alongside Long Covid

The World ME Alliance has written to Dr. Ghebreyesus of the World Health Organization (WHO) calling on him to ensure that progress for people with Long Covid doesn’t leave the millions already suffering with ME behind and to meet with representatives.  On Wednesday 12th October Dr. Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastationContinue reading “World ME Alliance calls on WHO Director General to recognize ME alongside Long Covid”

What do you know about ME? World ME Day asks you to learn more

Myalgic Encephalomyelitis (ME) dramatically limits the activities of millions of people across the world. In its most severe form, this disease can consume the lives of those affected. For the first time in history, an alliance of organizations from across the globe is jointly launching World ME Day on May 12th 2022. The European MEContinue reading “What do you know about ME? World ME Day asks you to learn more”

Parliamentary interest group for ME/CFS writes to European Commission

The European parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has written two letters to the European Commission. One was addressed to Stella Kyriakides, European Commissioner for Health and Food Safety. The other was sent to the Directorate-General for Health and Food Safety (DG SANTE). Both letters highlight the lack of action taken afterContinue reading “Parliamentary interest group for ME/CFS writes to European Commission”

Summary of the PETI meeting on the ME/CFS petition

On 1 December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion of petition 0204/2019 on biomedical research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A full recording of the meeting can be found below. Evelien’s speech The Vice-Chair of the Committee on Petitions, Tatjana Ždanoka, opened the discussion. She introducedContinue reading “Summary of the PETI meeting on the ME/CFS petition”