The Texas Standard has an interview with Amanda Morris who covers disability for the Washington Post and talks about the numbers of people who get a diagnosis of ME/CFS following Long Covid. Pacing is mentioned as a method of managing symptoms.
Dr Charles Shepherd comments
“The ME Association has been providing information and support to people with Long Covid dating back to May 2020 – when it became apparent that significant numbers of people were not recovering from COVID-19 and developing a post-covid syndrome that included symptoms that are the same as ME/CFS. And in some cases people with Long Covid were meeting diagnostic criteria for ME/CFS.
“Since then we have continued to cover all aspects of Long Covid on our social media where we regularly report on research and treatment developments.
“So we are very happy for people with Long Covid to join the ME patient community and take part in our discussions here on MEA Facebook.
“We have, however, been very critical of the way in which huge amounts of money and research capacity has been directed at the cause and treatment of Long Covid when people with ME/CFS have faced a serious lack of government funded biomedical research into the cause and treatment of ME/CFS for many years.
“We have also been critical of the way in which many clinicians and researchers have failed to acknowledge the important clinical and causative overlaps between Long Covid and ME/CFS and the failure to realise that what we know about the cause and management of of ME/CFS – especially activity and energy management – could help people with Long Covid.”
ME ASSOCIATION GUIDE TO LONG COVID AND ME/CFS
This is our guide to the clinical and pathological overlaps between ME/CFS and Long Covid
This guide also explains how we can help people with Long Covid who have ME/CFS like symptoms – debilitating fatigue and post exertional malaise, cognitive dysfunction, unrefreshing sleep, orthostatic intolerance, PoTS etc.
Texas Standard: Let’s begin with some numbers here. How many people have developed long COVID in the U.S. and how many of those have developed into this myalgic encephalomyelitis?
Amanda Morris: We don’t have definitive data on this, but the U.S. Census Bureau and the CDC have found that about one in 13 U.S. adults — or about 19.3 million adults — develop long COVID symptoms that last for at least three months. And among those, some studies suggest that about half of people with long COVID fit the criteria for a condition known as myalgic encephalomyelitis, also known as chronic fatigue syndrome, or ME/CFS.
With chronic fatigue syndrome, I think a lot of people think you are just tired a lot. But you’re saying that officials are sort of leaning more into this ME/CFS short as a way of describing other symptoms that have been noted.
Amanda Morris: It’s not just about fatigue. Although fatigue is a really big characteristic of this condition, it’s not the only one. A lot of people with ME/CFS experience other symptoms that get worse when they try to do too much activity. So even if they’re just tired, when they try to push through it, if they’re like, ‘Oh, you know what, I’m just tired. Let me do it anyway,’ they actually experience other symptoms that can include gastrointestinal symptoms, cognitive impairment or other orthostatic-related symptoms.