CEO Sonya Chowdhury on World ME Day
May 12, 2023
This World ME Day, we are calling for greater understanding in society that pushing harder can make you sicker.
For people with Myalgic Encephalomyelitis, post-exertional malaise (PEM) is a cruel and debilitating consequence of trying to engage in the world, severely limiting the lives of those affected. Despite our efforts in the UK, we are still pushing for this basic understanding to be accepted across healthcare and other services.
However, we are proud to be a part of the change we are seeing. The ground-breaking research of DecodeME is leading the way in properly screening for PEM, thanks to the significant level of patient and public involvement in the study.
At Action for M.E., we will continue to put the involvement of people with M.E. at the heart of our strategies going forward and work towards a better future for those affected by this debilitating disease.
To mark this year's World ME Day, Sonya Chowdhury, CEO of Action for M.E. and Chair of the World ME Alliance, says:
Three years ago in June 2020, The Sun printed an article highlighting the potential tsunami of ME/CFS cases that could follow COVID-19 infection. I was quoted as saying: “Evidence from studying the longer-term impact of other viral outbreaks, such as SARS-CoV-2 and H1N1 (swine flu), suggests we may well see an increase in post-viral M.E. as a result of COVID-19.”
Sadly, we have seen just that. An emergence of an ME-like illness with a significant proportion of people who have long COVID or post-COVID having overlapping symptoms with ME/CFS. While we know that there is a clear distinction in symptoms for certain individuals with long COVID, there are some cases where a diagnosis of ME/CFS has been given, either in conjunction with or instead of long COVID, and in other cases, individuals have been told that a diagnosis of ME/CFS is pointless because it too lacks support services or treatments that will provide benefit.
Post-exertional malaise (PEM) is a key symptom commonly shared by both ME/CFS and long COVID, and it is the focus of this year's World ME Day. PEM involves the worsening or flare-up of symptoms after physical, mental or emotional exertion, which can sometimes be delayed. For many, this severe and persistent exhaustion does not improve with rest and may last days, weeks or even permanently. This debilitating symptom negatively impacts many of the 65 million people worldwide with long COVID and 35 million with ME/CFS.
There are many organisations, charities and others providing critical support and advice to people with ME/CFS and long COVID. However, there is little funding available to enable this to grow and there continues to be a significant lack of funding for research. Stigma continues to be a major barrier to progress.
At Action for M.E., we’ve seen an increase in people using our information and support services with ME/CFS symptoms following COVID-19 infection, including our holistic healthcare services. So, today, on World ME Day, I would like to make an open call to the leaders of organisations or groups that support people with post-viral illnesses with overlapping ME/CFS symptoms to reach out and collaborate with us. We have seen through the World ME Alliance how unity and collaboration can begin to chip away at the multi-system issues that we face.
Take action this World ME Day to raise awareness about the harmful effect of pushing harder.
