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May 2024 International Research and Advocacy Roundup

Our International Roundup provides a brief snapshot of some of the ME/CFS research funding, clinical care and advocacy actions around the world in the last few months. 

Research 

 

  • The 1st International Conference on Clinical and Scientific Advances in ME/CFS and Long COVID took place in Portugal on 3-4 April 2024. Speakers included Dr Susan Levine, Dr David Systrom, Dr Elizabeth Unger, Dr Lucinda Bateman, Dr Luis Nacul and Professor Jonas Bergquist. Recordings of the conference are available: https://www.youtube.com/@ConferenciaEMSFCCovidLonga/streams
  • The European ME Alliance (EMEA) released the results of its Pan-European ME Patient Survey. The survey had more than 11,000 respondents with ME/CFS from across Europe.
    Key results:
        – ME /CFS is profoundly disabling
        – Myths persist that ME/CFS “burns out” and people recover over time
        – There are huge unmet healthcare needs
        – Pacing was by far the most helpful strategy
        – Activity-based therapies do more harm than good
        – Early diagnosis and education about pacing are key to preventing disease progression 
    https://europeanmealliance.org/emea-pan-european-survey-pr-uk.shtml
  • The US National Institutes of Health (NIH) has made the de-identified data of 14,000 people with Long COVID available to authorised researchers through Biodata Catalyst (BDC), a cloud-based system developed by the NIH. It is hoped that access to this data will help accelerate Long COVID research.
    https://www.nih.gov/news-events/news-releases/nih-recover-makes-long-covid-data-easier-access

Clinical Care
 

Advocacy

 

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