What long Covid patients can learn from Chronic Fatigue Syndrome patients

One retired Tauranga resident who has lived with chronic fatigue for 40 years hopes people with long Covid will be believed and given the support they need. Photo / Getty

Similarities between symptoms suffered by Chronic Fatigue Syndrome and long Covid patients have prompted experts to call for more research into both conditions.

Tiredness that doesn't go away with sleep, brain fog, intolerance for physical and mental effort and a racing heart are only some of the 203 symptoms that can be associated with long Covid.

But for Karyn Kerrison, a 40-year-old paediatric physio based in Rotorua, these symptoms were part of life long before 2020.

Kerrison was diagnosed with Chronic Fatigue Syndrome, or CFS, when she was 23, after failing to fully recover from bouts with glandular fever, influenza and the Epstein-Barr virus.

"The brain fog was significant. I couldn't stay on track and I was having problems finding words," Kerrison said.

"The fatigue was just the next level.

"I'd come home and sleep straight through from 6pm to 7am [but] the rest was unrefreshing.

"For me, it kind of makes sense that Covid-19 could be a trigger to make people fall into the CFS bracket."

Karyn Kerrison, a 40-year-old pediatric physio based in Rotorua was diagnosed with Chronic Fatigue Syndrome in her 20's. Photo / Supplied

Kerrison said studies of long Covid could benefit from the experiences of CFS patients.

"[Hopefully] it will help public understanding and awareness of conditions like ours."

Kerrison said people suffering from long Covid and CFS understood each other.

"There's no pill, injection or surgery. It's almost like we have to reinvent ourselves from a cellular level."

Kerrison said what people with CFS and long Covid needed was time to rebuild immune systems and stamina.

"Just having the financial burden for that time of recovery removed would help."

Kerrison said it would also help if dedicated, wrap-around services were set up for people with post-viral fatigue conditions.

"It would be nice to have a one-stop-shop, all in one service.

"It's really frustrating having to explain yourself over and over again."

One retired Tauranga resident who has lived with chronic fatigue for 40 years hopes people with long Covid will be believed and given the support they need. Photo / Getty

One retired Tauranga resident, who shared her experiences with CFS on the condition of anonymity, said she hoped more easily accessible information for health workers could help with diagnosing both conditions.

"I know a young person with long Covid," the 75-year-old said.

"I know [what reactions] she's going to get."

The resident has lived with CFS for 40 years. She developed the illness after contracting a mosquito-borne disease while living overseas.

"My body really started collapsing," she said.

"There was no such thing as an official diagnosis back then.

"There was very little information so my doctor didn't help."

She suffered from crashes, a racing heart and panic attacks for years and still finds it difficult to tell others of her condition.

"CFS has restricted my whole life but at the same time I was very careful about telling people because I looked okay."

Long Covid could affect about 50 million people worldwide. Experts now say some of these patients will also meet the criteria for Chronic Fatigue Syndrome. Photo / Getty

The more the 75-year-old found out about long Covid, she said, the more she empathised.

"I was where they are. The prognosis people want is that they're going to get better within a couple of months.

"They might not have recognised it yet but for a lot of them the life that they've known is going to change utterly."

She hoped medical professionals would be able to embrace people with long Covid in ways early sufferers of CFS were not.

"I hope people with long Covid are believed.

"There's going to be so many of them. It will push society to understand that not everything is perfect and that people need support."

University of Auckland immunologist and senior researcher Dr Anna Brooks. Photo / NZME

It comes as the release of a new report revealed a worst-case scenario could see Covid-19 lockdowns still impacting us five years from now.

Long Covid could be one of the pandemic's worst long-term impacts, the report said, as its wide range of symptoms could affect about 50 million people worldwide.

Experts expect some of these long Covid patients will also meet the clinical criteria for Chronic Fatigue Syndrome.

"We know that infections, both viral and bacterial, can cause CFS," University of Auckland immunologist and senior researcher Dr Anna Brooks told NZME.

"However, the reason this occurs in some people [is unclear]."

Brooks said post-infectious conditions had developed after other epidemics such as SARS and MERS.

"It's no surprise that the pandemic has also led to a similar long-term illness," Brooks said.

"There will undoubtedly be a subgroup of long Covid patients who have many of the same symptoms as people with chronic fatigue."

Otago University researcher and molecular biologist Professor Warren Tate. Photo / Supplied

Otago University researcher and molecular biologist Professor Warren Tate said there were overlaps between post-viral fatigue syndrome and long Covid.

"Long Covid and CFS have very similar molecular signatures for proteins connected to immune dysregulation, inflammation and energy production."

Complex Chronic Illness Support chief executive Miranda Whitwell said it was still unclear if Chronic Fatigue Syndrome and long Covid were the same illness or two very similar ones.

"What is clear is that both groups desperately need effective treatments and ultimately a cure.

"Much more funding is needed for rigorous biomedical research to build on what we can already learn from [chronic fatigue]."