‘Thousands of people with covid complications turn to ME Association for support’ | Sky News

September 18, 2020

by Katie Spencer, Sky News

Thousands of people experiencing post-coronavirus complications are turning to the ME Association for support.

More than half of coronavirus patients suffer persistent fatigue, regardless of the seriousness of their infection, a new study suggests.

Researchers at Trinity College in Dublin found that 52% of 128 people in the study reported ongoing tiredness and exhaustion, even 10 weeks after recovering from COVID-19. 

Trinity College, Dublin

The group were typically aged 50 and 54% were female, and two thirds of those with continuing fatigue were also female.

The authors concluded: “Our findings demonstrate a significant burden of post-viral fatigue in individuals with previous Sars-CoV-2 infection after the acute phase of COVID-19 illness.

“This study highlights the importance of assessing those recovering from COVID-19 for symptoms of severe fatigue, irrespective of severity of initial illness.”

It comes as a leading ME specialist said GPs are “floundering” when it comes to knowing how to treat those suffering long-term effects of the virus.

In the last six months, thousands of people who are experiencing post-coronavirus complications have turned to the ME Association for support.

Dr Charles Shepherd, who works as a medical adviser for the charity, says the government is being slow to act.

Dr Charles Shepherd

He said: “There's a tremendous amount that needs to be done and we are being very slow in getting to deal with this.

“We've been dealing with people with post-viral fatigue syndromes for 40 years, it's very common after any infection, but when it goes on for longer than three or four weeks you start to wonder if something more serious is going on.”

He continued: “We've got almost this tsunami of people that were previously strong adults who are just not getting better and general practice, primary care, is just not equipped for these people.

“I think they really are floundering as to what to do with these patients. The charity sector is obviously picking up and providing a great deal of information but these people need a lot more help.”

According to Dr Shepherd, it's not a question of greater financial support.

He said: “I don't think it's purely a question of money, if we got the right kind of online support from the NHS, better online resources. Community physiotherapists could be helping people a lot more, as could occupational therapists. There's a lot more could be done, it's a question of coordination.”

Six months on from coronavirus and Tom Stayte, 32, is still struggling to recover.

“About six weeks after my symptoms first started it was as if the virus had reactivated somehow, the old symptoms came back plus a whole array of new ones which were dizzying and baffling.

Tom Stayte

“I've had limbs going numb, burning sensation in my hands and feet, things like phantoms smells and cognitive problems with concentration… because those symptoms don't fit with the description you would generally find of COVID-19 it was really hard to get doctors to recognise that this was a part of the disease.”

At the start of the year, Mr Stayte was regularly running marathons, now he barely leaves the house. At times he's struggled to even send emails.

“Exercise triggers my symptoms… my doctor was initially helpful but when blood tests looked as though things were normal, it really shifted towards not believing my symptoms were caused by coronavirus, offering me anti-depressants. It's been really difficult.”

It's too early to know why – people like Tom are reporting ongoing side effects from coronavirus months later. One theory is that the virus triggers what's known as a cytokine storm, a massive outpouring of immune system chemicals which causes an intense inflammatory response, flaring out of control.

However, because the infection is so new, scientific studies into the long-term effects are only just getting under way.

As Mr Stayte explains: “We are the people that will be studied to discover what happens, our lived experience will be what forms that research, and in some ways it's interesting to be a part of that but it's also terrifying.”

It's estimated about 600,000 people in the UK have experienced some form of post-COVID-19 illness.

According to the COVID Symptom Tracker App, around 12% of the people who took part in the study recorded symptoms lasting more than 30 days. One in 200 experienced side-effects 90 days later.

Campaigner Ondine Sherwood, one of the founders of Long-COVID SOS, said: The discourse has been about this two-week illness, about underlying conditions and older people, and that is not the reality.

“What we need is a dedicated service for people with COVID symptoms… a rehabilitation service which includes proper diagnostics.

“People need more sophisticated tests that show what's going on with their hearts, their vascular system and their neurological systems.”

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