By Janelle Miles, ABC
Debbie Flesser, 66, has lived with myalgic encephalomyelitis for more than 20 years. Researchers say (ME/CFS) share similar with long Covid sufferers. Photo: ABC News / Steve Keen
Long Covid patients exhibit swelling in an area of the brain linked to memory problems, poor concentration and delayed responses during conversations, researchers have found.
Based on high-powered scanning, Griffith University scientists say they have also shown patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share similar issues in a part of the brain known as the hippocampus.
Because the shape of the hippocampus resembles that of a sea horse, the name is derived from the Greek words, hippos, meaning horse, and kampos, meaning sea monster.
Potential to fast-track treatments
The Griffith researchers, based at the National Centre for Neuroimmunology and Emerging Diseases (NCNED), compared high-resolution magnetic resonance imaging brain scans from 17 long Covid patients, 29 ME/CFS patients, and 15 people with neither condition.
They found those with long Covid or ME/CFS had a larger than normal hippocampus compared with the 15 healthy participants
Dr Kiran Thapaliya, the lead author of a Griffith University study, which compared the brain scans of patients with long Covid or myaligic encephalomyelitis/chronic fatigue syndrome with healthy participants. Photo: ABC News / Steve Keen
Significantly, lead researcher Kiran Thapaliya said the study, published in the scientific journal PLOS ONE, also found the size of the hippocampus was associated with symptom severity in both patient groups.
"We found significant association between hippocampus volume and severity measures such as impaired concentration, unrestorative sleep, pain and fatigue," Thapaliya said.
NCNED director and study co-author Sonya Marshall-Gradisnik said the findings highlighted the overlap between long Covid and ME/CFS that could be explained in the brain imaging scans and specifically, the increased size of the hippocampus.
She said she hoped the results would better inform medical and allied health professionals about both conditions and pave the way towards exploring potential treatments.
"Because there's such overlap between ME and long Covid, it allows us to fast-track, potentially, treatments that we've been exploring in ME patients, and how we can then apply them to long Covid," Professor Marshall-Gradisnik said.
Findings 'validating' for ME/CFS patient
Debbie Flesser, a former Education Queensland psychologist who has lived with ME/CFS for 23 years, welcomed the research as "validating that this is a real illness".
"There hasn't always been recognition that this is a physical illness," she said.
Ms Flesser is hopeful the Griffith University study, and others like it, will eventually result in better therapies and diagnostic tools for ME/CFS and long Covid, while acknowledging a test is probably still "a long time" away.
"If someone has diabetes, the doctor can do a test, a blood test, and see how severe it is," she said.
The 66-year-old said ME/CFS affected her daily life with "relentless" fatigue, memory problems, brain fog, and trouble sleeping.
"If there's a long conversation with someone, it's difficult to keep maintaining that concentration and taking in what they're saying, and being able to process that," Flesser said.
Former Education Queensland psychologist Debbie Flesser has welcomed the research. Photo: ABC News / Steve Keen
She also experiences regular sore throats, dizziness and digestive problems.
"The list goes on," Flesser said.
"It's stolen my whole life away - the ability to be the mother and the grandmother that I want to be.
"It's taken my hopes and dreams that I had, and it leaves you, when you live alone, with a great deal of isolation and loneliness. It's a horrible thing to have."
The Gold Coast woman takes low-dose naltrexone to treat her ME/CFS, saying it helps with post-exertional malaise - the delayed worsening of symptoms such as body pain, muscle weakness and memory problems she experiences after everyday activities, such as shopping.
But she said it failed to eliminate daily fatigue.
Functional compensation
Dr Thapaliya, a post-doctoral research fellow at Griffith University, suggested the increase in the size of the hippocampus the scientists found in ME/CFS and long Covid patients could be due to the formation of new cells.
There could be some kind of functional compensation going on - if the hippocampus is having difficulties in processing … information, it requires more neurons, or more cells, to function," he said.
Another possibility is that virus remains in the brains of patients with long Covid and ME/CFS, which is frequently linked to infections, such as with Epstein-Barr virus.
Dr Thapaliya said to his knowledge, no other studies had reported an increase in hippocampal volume in other neurodegenerative diseases, with conditions such as Alzheimer's disease and motor neuron disease showing a decrease in size.
'They aren't just psychological issues'
Immunologist Corey Smith, who was not involved in the Griffith University study, said the research provided more evidence of the potential impact of long Covid and ME/CFS on patients' brains.
"I think the good news is that they're starting to really validate the fact that these aren't just psychological issues, these diseases. They are really physiological manifestations," Professor Smith said.
"These symptoms are happening to people. This again provides supporting evidence for that, and we need to continue investigating it. The worst thing you can be is be dismissive of people."
However, the QIMR Berghofer group leader in translational and human immunology described the Griffith University study as preliminary and said the findings would need to be validated in many more people.
He said long Covid and ME/CFS were complex conditions, making researching them very difficult.
"You've got to commend people for continuing to do that," Professor Smith said.
"It's not easy."
This story was first published by the ABC