Sick and tired of Covid-19: The 'recovered' patients who aren't getting better

9:22 pm on 15 September 2020

By Louise Thornley*, Reporter

For a subset of Covid-19 survivors, the illness has lingered. Slammed by fatigue, pain, headaches and more, they're just not getting better. What's going on, and what could help?

Headache, fatigue symptoms.

Data from the UK's Covid Symptom Study app suggests 12 percent of people who are infected with the virus, have symptoms for more than a month. Photo: 123RF / Olga Yastremska and Leonid Yastremskiy

Imagine having constant debilitating headaches, fatigue, chest pain and irregular heartbeat. Yet after an emergency hospital admission, doctors can't find anything abnormal. They explain you have post-viral effects of Covid-19, and send you home to 'get on with it'.

This is the reality for James, a 20-year-old living in the United Kingdom. After getting Covid-19 symptoms in March, he still battles frightening symptoms.

Most people with the coronavirus recover within a few weeks. If symptoms persist for more than three months, people are put in the 'long Covid' category.

James has shared his story on the Long Covid SOS website, a group advocating for people experiencing prolonged recoveries: "My life has essentially stopped. I wake up every day feeling just as ill as I was in the early weeks. I'm constantly worried my condition will get worse like it has done before - only this time something terrible will happen."

"A few months ago, I was the average 19-year-old who never really had to think about his health but now I live in fear wondering what my future holds."

Professor Paul Garner was still crushingly exhausted almost 100 days after contracting the coronavirus, unable to be out of bed for more than three hours at a time. Himself an infectious disease epidemiologist, Garner has been studying and sharing his own long-haul journey ever since he first fell ill on 19 March.

Garner's latest blog has recently been published - after six months, he's still unwell.

New Zealand tech entrepreneur Jenene Crossan has also reached the half-year mark without recovering. She spoke to RNZ's Jim Mora about her long-haul struggle.

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Jenene Crossan still hadn't recovered six months after contracting Covid-19 Photo: RNZ

Early research on 'long Covid' recovery

These three aren't isolated cases. Data from the UK's Covid Symptom Study app suggests 12 percent of people who are infected with the virus, have symptoms for more than a month.

People report numerous signs of prolonged recovery. Fatigue, shortness of breath, muscle and joint pain, difficulty concentrating ('foggy' thinking), tachycardia (fast heartbeat), nausea, headaches and decreased exercise capacity are common. One surprising symptom is toe lesions, dubbed 'Covid toes'.

A survey by the US Centers for Disease Control and Prevention (CDC) found 35 percent of outpatients hadn't returned to their usual state of health several weeks after testing positive for Covid-19. Symptoms lingered even for healthy, active younger people (aged 18-34 years). One in five hadn't returned to their usual state of health. Recent surges in young people contracting Covid-19 in the US and elsewhere make this especially worrying.

Another survey of 640 long-haulers found symptoms lingered for 40 days on average, and for many people continued for more than six weeks. Ongoing fatigue was reported by 91 percent of long-haulers. Major declines in physical activity were also common.

Fatigue and inability to exercise

Persisting fatigue and loss of exercise capacity is familiar to many with chronic health conditions. It's not simply tiredness or low energy: it is overwhelming extreme physical and mental exhaustion that massively impacts your life.

Some describe the fatigue experience as feeling hit by a truck, the worst-ever hangover or like severe jet lag - or all three. For people like me who have fatigue from fibromyalgia, it feels like the above, plus having a severe flu that can linger for days, weeks or longer.

Potential explanations

Why are people not getting better? It's too early to say - the coronavirus is new and produces diverse effects on the body, so much more research is needed. But several possible reasons are being discussed.

Lasting symptoms could be the usual course of illness for a subset of Covid-19 patients; they could indicate a form of post-viral fatigue (well-documented after many infections including viruses); or they could be at risk of developing ME (chronic fatigue syndrome), a debilitating neuro-immune disease.

Some experts in ME and public health have suggested that post-Covid symptoms appear similar to those of ME.

In July, Dr Anthony Fauci, lead infectious disease expert for the United States, said in an interview "it's extraordinary how many people have a post-viral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome".

Studies after the 2003 SARS pandemic found both post-viral fatigue and ME followed the viral illness. About 10 percent to 27 percent of SARS cases are estimated to have developed ME after SARS infection.

Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, speaks duringthe Senate Health, Education, Labor and Pensions (HELP) Committee hearing on Capitol Hill in Washington DC on June 30, 2020 in Washington,DC.

Dr Anthony Fauci Photo: AFP

Immunologists think long-term Covid-19 symptoms may be due to the body's immune response becoming overactive. It's just not switching off after fighting the virus, with widespread, unregulated inflammation that can make people feel terrible. This is similar to the latest thinking on what happens with ME - the immune system has become over-protective, affecting the central nervous system and the hypothalamus.

Some Covid long-haulers will recover before ME could be a possible diagnosis, and some don't have the hallmark symptom of ME (post-exertional malaise, an inability to recover normally from even minor physical or cognitive effort). Others have problems that aren't ME symptoms, like lung damage.

Dr Charles Shepherd, medical advisor for the UK's ME Association, is closely following post-Covid developments. He said we just don't know yet why debilitating fatigue is so common in both acute and post-covid infection. The coronavirus itself appears to produce diverse complications. In other cases, the clinical picture is consistent with the post-viral fatigue that often precedes ME.

He divides Covid patients into three groups: those requiring long rehab after hospitalisation; those still suffering all the initial symptoms; and those with post-Covid fatigue or post-Covid ME.

Whatever the scientists find out in the future, it's important that all who are yet to recover from the illness get the help they need.

New Zealanders with lasting Covid symptoms can join a newly-established Facebook group.

How to manage fatigue

Evidence from clinicians and patients suggests good early management of post-infection fatigue can lower the chances of this turning into ME or another long-term illness.

Some of us with fatigue conditions have learned the hard way that ignoring the body's signals and pushing yourself can worsen the illness, sometimes dramatically or even irreversibly.

Rest and relaxation is critical, says ME Association guidance for people struggling to recover from Covid-19. Sounds obvious, but often not easy to do, especially when there's pressure to keep going.

Pacing is recommended. It's a widely-used top-line strategy to manage fatigue and fluctuating capacity for physical and mental activities. This is where you alternate activities with rest breaks, and only slowly increase activity after finding a safe 'baseline' (where your symptoms don't get worse).

Be flexible with what you try to do. Avoid 'pushing through', hold back before you're exhausted, and don't ignore symptoms. Avoid vigorous or prolonged exercise until after you've remained well for some time. See your GP and seek online ME guidance.

Young athletic woman taking a break from training standing resting, fatigue.

It's important not to push yourself too quickly or hard after recovering from a viral infection. Photo: 123RF/ Lars Zahner

If you're employed, try to negotiate a staged return or flexible work options with your employer so you don't provoke a big relapse from returning to work.

Like 'long Covid' patients, people with ME are faced with a medical void where the condition lacks treatment options, and is misunderstood by many health professionals and the public.

For both groups of patients, peer support networks step into this vacuum. New Zealanders with lasting Covid symptoms can join a newly established Facebook group.

We need greater professional and public understanding of post-viral fatigue and related conditions - and evidence-based treatments. Guidance for New Zealand should be developed in consultation with health professionals and patients who are already experts in managing fatigue.

Our country has been commended for our Covid-19 response so far. In future let's also be a leader in evidence-based support for people with long covid - and other fatigue conditions like ME and fibromyalgia.

*Louise Thornley is a freelance writer and researcher on public health topics, with a background in public health research and policy. She currently does part-time work for Radio New Zealand and Porirua City Council.

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