The ME Association are pleased to announce that we have awarded DecodeME the Howes-Goudsmit Award 2025 for their extensive work and commitment to their genome-wide association study.
The Decode ME team is led by Professor Chris Ponting (Chair of Medical Bioinformatics, University of Edinburgh & Decode ME Chief Investigator), Sonya Chowdhury (CEO of Action for ME) and Andy Devereux-Cooke (Patient Representative and Co-Investigator at DecodeME) and they represent a much wider team of individuals involved in the DecodeME project.
The DecodeME team have informed the MEA that they intend to use the £5,000 prize money on ME/CFS research that builds on DecodeME with the current first priority being a whole genome sequencing project, Sequence ME and Long Covid.
If you wish to donate to future research, you can do so here:
Professor Chris Ponting, Decode ME Chief Investigator commented on the acceptance of the award:
DecodeME is very grateful for this award. This recognises how much has been given to this project by many people, from researchers to people with lived experience of ME/CFS and the tens-of-thousands of participants, over many years. We gratefully accept this award on behalf of the team and all who donated their time and energy to participate.
Dr Charles Shepherd, ME Association Honorary Medical Adviser, commented:
Having been involved with some of the initial planning stages, and closely followed the progress of DecodeME, I know that a huge amount of work has been put into this very robust piece of research that has examined the genetic foundations of ME/CFS.
The results provide researchers with some important clues about where research now needs to focus in relation to possible diagnostic biomarkers, immune and nervous system involvement, and possible drug treatments which are aimed at the underlying disease process rather than just on trying to help with symptoms.
So this award is very well deserved!
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
About the Howes-Goudsmit Award
The annual Howes Goudsmit Award – along with £5,000 prize money – was created thanks to a very generous donation from Dr Ellen Goudsmit, a disabled scientist who helped to create awareness of ME in both the UK and the Netherlands and studied the disease for over 40 years.
The award recognises any researcher or research group that makes a significant contribution to including people with severe and very severe ME/CFS in a research project and/or produces research that makes a significant contribution towards our understanding or management of severe and very severe ME/CFS.
The prize of £5,000, which will be used to help fund a whole genome sequencing project, Sequence ME and Long Covid, was named after Mrs Sandra Howes and the late Dr Felicie Goudsmit.
Mrs Howes has severe ME and has spent years writing about the disease. Mrs Goudsmit was a carer and as such, became very familiar with the many challenges of dealing with severe disability.
Previous Awards
- Norwegian team of researchers are presented with the Howes-Goudsmit Award | Sep 4, 2024
- Howes-Goudsmit Prize Awarded to Caroline Kingdon from the UK ME/CFS Biobank | May 2023
- Severe ME Week: Howes Goudsmit Prize Awarded to Producers of ‘Dialogues of a Neglected Illness’ | August 2022
- Announcing The Howes Goudsmit Prize for Severe ME Research | July 2021
More Information
- Decode ME: Initial DecodeME DNA Results | 6 August, 2025
- Edinburgh University: Press Release: Key genetic differences found in people with ME/CFS | 6 August, 2025
- ME Association: Decode ME release initial DNA results! | 7 August, 2025
- Norwegian Research: Journal of Clinical Medicine: Severe and Very Severe Myalgic Encephalopathy/Chronic Fatigue Syndrome in Norway: Symptom Burden and Access to Care | February, 13 2023
- Dialogues for a neglected illness (Dialogues for ME/CFS) Videos | May 2023
- The UK ME/CFS Biobank at the London School of Hygiene and Tropical Medicine