With the increasing reports of ‘Long COVID-19’ or ‘long-haulers’, we are looking into future research possibilities in this area. Some people that have COVID-19 may go on to develop ME/CFS and following up these people may uncover clues on how the disease progresses.
Please note that currently we do not have funding in place for a research project and, in the case that we do secure funding, there is no guarantee that all people experiencing the long-term effects of COVID-19 will be eligible to participate. However, please contact us if you are still experiencing long-term effects from COVID-19 infection over 3 months ago. A common symptom of long haul COVID-19 is extreme tiredness when you try to do anything. If you would be interested in participating in possible future studies, please contact us with your name, date of birth, address and specifying your interest in a post-COVID-19 study and we will add your information to our post-COVID-19 mailing list. If you have already had a past diagnosis of ME/CFS, please let us know.
Your details will be stored securely on the London School of Hygiene & Tropical Medicine server and will not be shared with anyone outside of the CureME research team. Should a project go ahead, we will contact you via the email address supplied.
We are excited to announce that we, in collaboration with the University of Edinburgh and Action for ME, have been successful in securing a £3.2 million research grant, awarded jointly by the Medical Research Council and National Institute for Health Research, to begin work on a large-scale genetics study. DecodeME, the ME/CFS DNA study, will look at samples from 20,000 people with ME/CFS and hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.
The study is scheduled to begin in September, with recruitment of participants from March 2021. Anyone with ME/CFS aged 16 years or over who wants to take part in the DecodeME study can visit www.decodeme.org.uk to find more information and register their interest.
With the help of our many generous donors, the UKMEB now has over 600 people participating in the Biobank project – people with ME/CFS, Multiple Sclerosis and healthy controls. We have over 35,000 aliquots (samples) stored at the University College London/Royal Free Hospital BioBank, a state-of-the-art facility, ready to be used for biomedical research. In 2017, our multi-year study into the biomarkers of ME/CFS was renewed by the US National Institutes of Health for a further four years. This grant enabled additional recruitment to increase the capacity of the Biobank, both for use at LSHTM and to provide samples for research at other institutions. Since opening, we have distributed samples to researchers in the UK, Europe, the Middle East and America.
Currently, we are no longer recruiting participants for this study.
We are always considering opportunities for future research in ME/CFS and in the newer phenomenon of long haul COVID-19. If you would like to receive information about future research studies from CureME, then please contact us with your name, date of birth and address and we will add your information to our Future Studies mailing list.