One of the primary objectives of ANZMES (Associated New Zealand Myalgic Encephalomyelitis Society) is to further the cause of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) through the promotion and funding of research into the disease. The global COVID-19 (SARS-CoV-2) pandemic has changed the way the world operates, interacts, and deals with new viruses. Yet the notion of post-viral syndromes is nothing new. People with ME/CFS who remain in a ‘state of dis-ease’ after glandular fever (Epstein Barr/mononucleosis) will attest to this. Likewise, an estimated 30% of people who had COVID-19 infections have not returned to their pre-illness state of health. This rising problem recognised by health professionals worldwide was initially coined as Long-hauler then Long COVID. The World Health Organisation (WHO) recently released a Clinical Case Definition, further acknowledging the problem faced by millions globally.
The current WHO case definition states that:
“Post COVID-19 condition occurs in individuals with a history of probable or confirmed SARS-CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms that last for at least 2 months and cannot be explained by an alternative diagnosis. Common symptoms include fatigue, shortness of breath, cognitive dysfunction but also others which generally have an impact on everyday functioning. Symptoms may be new onset, following initial recovery from an acute COVID-19 episode, or persist from the initial illness. Symptoms may also fluctuate or relapse over time. A separate definition may be applicable for children.”
As previously highlighted in the ANZMES May 2021 press release for ME Awareness Day, there are striking similarities between the symptoms experienced by people with Long COVID and the symptoms experienced by people with ME/CFS. Besides the three mentioned in the WHO definition above, there are also flu-like symptoms (fevers/chills, muscle/joint aches/pains, headache, swollen lymph nodes) and gastrointestinal issues. These symptoms seem common in people experiencing post-viral syndromes, and yet people with ME/CFS and Long COVID experience additional symptoms unique to their conditions. For example, many with ME/CFS also endure autonomic dysfunction (dysautonomia, orthostatic intolerance), neuroendocrine malfunctions (cold extremities, intolerance to extreme heat/cold), immune over-activation (sensory, chemical, and environmental sensitivities) and other symptoms related to neuroinflammation and metabolic dysfunction. Those with Long COVID can be prone to depression or anxiety as a direct result of being chronically ill and may also have organ damage caused by the SARS-CoV-2 virus. Science and medicine still have much to learn about both conditions. For instance, why do some people contract COVID-19 and recover within a few weeks whilst others develop a persisting post-viral condition? Many of those infected in the first wave of the pandemic remained unwell more than 19 months later. Is the virus still present and active in the body or has the immune system gone haywire – stuck in a loop of search and destroy? Why does the immune system malfunction? What clues can the molecular structure of people with ME/CFS provide that may answer these questions for those with Long COVID? How can understanding Long COVID help people with ME/CFS?
These questions and more are the focus of a new study currently underway in New Zealand by co-investigators Dr. Anna Brooks, Senior Lecturer (School of Biological Sciences, Faculty of Science, University of Auckland) and Emeritus Professor Warren Tate (Department of Biochemistry, University of Otago) with Dr. Rosamund Vallings from Howick Health & Medical Centre as the key clinical investigator. ANZMES is pleased to provide partial funding for this research. Seed funding has also been awarded by Dr. Brooks’ department, Faculty, and the Maurice Wilkins Centre, a Centre for Research Excellence. However, most of the funding has been obtained via crowdfunding hosted by the University of Auckland Foundation. This funding avenue is still open and accepting donations: http://bit.ly/3AuTiYN
Dr. Brooks states “There is an urgent need to improve our understanding of the underlying biomedical mechanisms and immune dysfunction associated with Long COVID and other post-viral diseases. Already research is beginning to reveal the similarities between certain lingering symptoms following COVID-19 illness and ME/CFS. Patient groups are now strongly advocating for biomedical research on Long COVID to be collaborative, multidisciplinary and importantly, draw on the experience of those who have been investigating biomedical causes and mechanisms of ME/CFS.”
The experience Dr. Brooks refers to is that of Prof. Tate, winner of the Rutherford medal in 2010, who has been investigating ME/CFS since 2012, and has identified molecular signatures of ME/CFS. As co-investigators for this new study, Dr. Brooks and her team are conducting immunological studies and Prof. Tate and his team are performing molecular studies of Long COVID and its relationship to ME/CFS. Prof. Tate aims to perform molecular analyses on a subgroup of this study in addition to providing samples from his ME/CFS patient group for analysis of immunological status before and after vaccination. In addition to being an experienced cellular immunologist, Dr. Brooks is also Director of Auckland Cytometry, the core facility which houses the leading-edge technologies necessary to perform these critical analyses.
How will this research benefit the ME/CFS community? Since a certain percentage of people with Long COVID symptoms also fit the diagnostic criteria for ME/CFS and many go on to receive this diagnosis as well, the samples analysed as part of this study will be beneficial in tracking early onset ME/CFS in comparison to Long COVID. It is hoped that the researchers will be able to identify key markers of immune dysfunction, especially as a percentage of samples will be obtained at very early stages of disease. This investigation into the unique immune signature of ME/CFS and Long COVID has the potential to unveil a biomarker specific to these conditions. As Dr. Brooks’ core expertise is with advanced flow cytometry, this research will screen for over 100 immune cell biomarkers which to date supersedes any previously screened for in ME/CFS research. “This will be a world first.” states Dr. Brooks.
ANZMES is proud to play a part in this exciting new research endeavour into ME/CFS and Long COVID and will continue to update the community with news as the study progresses. As always, ANZMES welcomes donations which enable continual contributions towards vital and potentially life-changing research: www.anzmes.org.nz.