Article by Sean O'Neill, published by The Times (UK) online August 19, 2021 

Link between Long COVID and ME could transform the lives of suffers 

People with chronic fatigue syndrome have often complained they are not taken seriously but that could change as research is done into similar effects from coronavirus.

There are days when Stacey Fresco struggles to sit, never mind stand, upright and just has to go to bed and sleep.

“Exhaustion is the big thing but there are other things people might think are silly like tinnitus, vertigo — sometimes even if I move my eyes the room spins — rapid heartbeat, muscle aches, joint pains, but the fatigue is the worst,” she says.

“We went to lunch on Sunday. And on the way home, I started to feel really sick, really tired. As soon as we got home I just lay down and I was out like a light. I don’t even remember lying on the bed. I was so tired. I was never like that before. Sleeping during the day was something I did not do.”

It’s more than 16 months since Stacey, 51, nearly died in hospital during the first terrifying wave of the COVID-19 pandemic. Her husband and two daughters were brought to hospital to say their final goodbyes.

Then a decision to “prone” her — turning her onto her stomach to improve air flow into her lungs — saved her life. The many weeks in hospital have, however, taken a huge toll and her life is not the same as it was before COVID.

The physical effects of invasive ventilation are not the only things she is suffering. Sometimes she struggles to find the right word as her concentration lapses. At other times her energy levels are so low she has to choose between having a shower or taking a short walk; if she does both she will be unable to do anything else that day.

Stacey was one of the first people in the country to attend a Long COVID clinic but has since been discharged.

“They had 4,000 COVID patients at the hospital at the time and were only seeing two people a week with post-viral issues. They were very empathetic and understanding but all the blood tests and heart checks said I was normal and they didn’t really know what to do with me.

“Then they had to make space for other people so they said, we are discharging you, because we just don’t know enough. And because there’s nothing wrong as such, nothing we can see. We can’t help you anymore.

“My sister puts it very well. She says ‘Stacey looks really well on the outside but on the inside, not so great’. To be honest, it’s exhausting and it’s exhausting to feel this bad all the time.”

Stacey’s family has experience of chronic illness and if the doctors who saw her last year didn’t know what was wrong with her, she has a pretty clear idea. Her Long COVID, she says, “correlates strongly with ME, the similarities are striking”.

Her recognition, as a patient, of the overlap between long Covid and myalgic encephalomyelitis (ME), also sometimes called chronic fatigue syndrome (CFS), is increasingly shared by the scientific community.

Anthony Fauci, the man heading the United States response to the pandemic, sparked debate when he talked of the issue a year ago just as Long COVID was coming to be recognised as a major problem.

“It’s extraordinary how many people have a post-viral syndrome that’s very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome,” he told Medscape. “They just don’t get back to normal energy or normal feeling of good health.”

Eleanor Riley, professor of immunology at Edinburgh University, wrote in The Scotsman last month that “an ME/CFS-like syndrome is emerging as a long-term consequence of COVID-19”.

Read the full article here

Emerge Australia is a national organisation providing education, advocacy, research and support services for Australians living with ME/CFS. With the medical and media spotlight currently on Long COVID it is finally bringing ME/CFS out of the shadows and highlighting how proper funding and new research is decades overdue.

Emerge Australia is determined to seize this moment to help transform the lives of the estimated 250,000 Australians living with ME/CFS and other post-viral fatigue conditions. Please support our campaign, by sharing it amongst your networks to keep the conversation flowing. And if you possibly can, please make a donation to help people with a disease strikingly similar to Long COVID, expect hardly anyone has heard of it. You can keep up to date with the campaign and Emerge Australia's work by subscribing to our monthly newsletter. You can read similar articles to this by visiting our ME/CFS and Long COVID page