Myalgic encephalomyelitis and chronic fatigue syndrome — what does long COVID mean for us?
“When people hear about long COVID in the news as if it’s a new condition and no one’s come across anything like it before, people who have been living with myalgic encephalomyelitis (ME) for many years find that difficult to hear,” says Peter Gladwell, clinical specialist physiotherapist and service lead at the Bristol ME Service, and a member of the British Association of Clinicians in chronic fatigue syndrome (CFS)/ME (BACME).
There are no drugs approved in the UK for fatigue in ME/CFS. The few medicines that are given to manage symptoms are rarely evidence-based in the ME/CFS population but translated under expert guidance from other conditions, such as neuropathic pain or nausea.
There are several reasons behind this — a lack of funding has left ‘fatigue science’ decades behind medical understanding of its pathway peers, such as pain or inflammation. This prevents drug–target identification and design of novel therapies.
In addition, the ME/CFS community comes with added layers of complexity that challenge drug–based therapy advancement.
“With ME/CFS it is difficult to gather a cohort with clear, documented evidence of an infective onset — people will often spot a couple of things, a complex pattern that triggers ME/CFS in their life, and it’s very difficult then to try and tease out to what extent these different triggers are perhaps creating a response within the host,” Gladwell explains.
“Whereas with long COVID, it’s a bit more obvious it’s a COVID-19 infection that is the significant factor and that documentation is really helpful for research.”
The sheer numbers of people with long COVID mean a subset of similar medical history can be recruited for clinical trials.
“Another reason is people with ME/CFS are often sensitive to medicines and can’t start at the dose someone else might,” Gladwell adds. “So then you don’t have a standard intervention that you can compare, because each patient has got to titrate up gradually.”
Although there are early indications of medicines sensitivity in the long COVID cohort, their size means they have an advantage in overcoming this complexity.
There is hope that the spotlight on long COVID will advance the understanding of fatigue and generate new therapies that can also benefit the ME/CFS community.
“But I think that whatever findings come from long COVID research will need to be re-tested in the ME/CFS population.”
