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This story was originally posted on RNZ.co.nz and is being republished with permission.
ANALYSIS: For a subset of Covid-19 survivors, the disease has persisted. Struck by fatigue, pain, headaches, and more, they just aren’t getting better. What is happening and what could help?
Imagine having constant debilitating headaches, fatigue, chest pain, and an irregular heartbeat. However, after an emergency hospitalization, doctors cannot find anything abnormal. They explain that you have post-viral effects from Covid-19 and send you home to ‘move on’.
This is the reality for James, a 20-year-old who lives in the UK. After having symptoms of Covid-19 in March, he is still battling terrifying symptoms.
Most people with coronavirus recover within a few weeks. If symptoms persist for more than three months, people are classified in the category of “prolonged Covid”.
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James has shared his story on the Long Covid SOS website, a group that advocates for people experiencing prolonged recoveries: “My life has basically stopped. I wake up every day feeling as sick as I did in the first few weeks. I am constantly worried. my condition will get worse as it has before, only this time something terrible will happen. “
“A few months ago, I was the average 19-year-old who never had to think about his health, but now I live in fear wondering what the future holds.”
Professor Paul Garner was still overwhelmingly exhausted nearly 100 days after contracting the coronavirus, unable to get out of bed for more than three hours straight. Garner, who is an infectious disease epidemiologist, has been studying and sharing his own long-haul journey since he first fell ill on March 19.
Garner’s latest blog has been published recently; after six months, she is still not well.
New Zealand tech entrepreneur Jenene Crossan has also hit the mid-year mark without recovering. She spoke with RNZ’s Jim Mora about her long-term struggle.
RNZ
Jenene Crossan had yet to recover six months after contracting Covid-19.
Preliminary investigation on the recovery of ‘prolonged Covid’
These three are not isolated cases. Data from the UK’s Covid Symptom Study app suggests that 12 percent of people 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 (“fuzzy” thinking), tachycardia (rapid heartbeat), nausea, headaches, and decreased exercise capacity are common . A surprising symptom is injuries to the toes, called ‘Covid toes’.
A survey by the US Centers for Disease Control and Prevention (CDC) found that 35 percent of outpatients had not returned to their usual health several weeks after testing positive for Covid- 19. Symptoms persisted even in healthy, active youth (18 to 34 years). One in five had not returned to their normal state of health. Recent increases in young people contracting Covid-19 in the US and elsewhere make this especially concerning.
Another survey of 640 long-haul carriers found that symptoms persisted for 40 days on average, and for many people they continued for more than six weeks. 91% of long-haul carriers reported continuous fatigue. Large decreases in physical activity were also common.
Fatigue and inability to exercise.
Many people with chronic illnesses are familiar with persistent fatigue and loss of exercise capacity. It is not simply tiredness or lack of energy – it is an overwhelming extreme physical and mental exhaustion that greatly impacts your life.
Some describe the experience of fatigue as being hit by a truck, the worst hangover ever, or a severe jet lag, or all three. For people like me who have fibromyalgia fatigue, it feels like the above, in addition to having a severe flu that can last for days, weeks, or longer..
Erin Scott / AP
Dr. Anthony Fauci, a leading US infectious disease expert, suggested that post-Covid symptoms are similar to those of MS.
Potential explanations
Why don’t people improve? It’s too early to tell: the coronavirus is new and has a variety of effects on the body, so much more research is needed. But several possible reasons are being discussed.
Long-lasting symptoms could be the usual course of illness for a subset of Covid-19 patients; could indicate a form of post-viral fatigue (well documented after many infections, including viruses); or they could be at risk of developing MS (chronic fatigue syndrome), a debilitating neuroimmune disease.
Some MS and public health experts have suggested that post-Covid symptoms appear similar to those of MS.
In July, Dr. Anthony Fauci, America’s leading infectious disease expert, said in an interview that “it is remarkable how many people have a post-viral syndrome that is very similar to myalgic encephalomyelitis / chronic fatigue syndrome.”
Studies after the 2003 SARS pandemic found that both post-viral fatigue and MS followed the viral illness. It is estimated that between 10% and 27% of SARS cases have developed MS after infection with SARS.
Immunologists believe that long-term Covid-19 symptoms may be due to the body’s immune response becoming overactive. It just doesn’t shut off after fighting the virus, with widespread, unregulated inflammation that can make people feel terrible. This is similar to more recent thinking about what happens with MS: The immune system has become overprotective, affecting the central nervous system and the hypothalamus.
Some Covid carriers will recover before MS can be a possible diagnosis, and some do not have the characteristic symptom of MS (post-exertional discomfort, inability to recover normally from even minor physical or cognitive exertion). Others have problems that are not symptoms of MS, such as lung damage.
Dr Charles Shepherd, UK ME Association Medical Adviser, is closely following post-Covid developments. He said we still don’t know why debilitating fatigue is so common in acute and post-covid infection. The coronavirus itself appears to produce various complications. In other cases, the clinical picture is consistent with the post-viral fatigue that often precedes MS.
It divides Covid patients into three groups: those who require prolonged rehabilitation after hospitalization; those who still suffer from all the initial symptoms; and those with post-Covid or post-Covid ME fatigue.
Regardless of what scientists discover in the future, it is important that everyone who has not yet recovered from the disease get the help they need.
New Zealanders with long-lasting Covid symptoms can join a newly established Facebook group.
How to manage fatigue
Evidence from doctors and patients suggests that good early management of post-infection fatigue can reduce the chances of it developing into MS or another illness in the long term.
Some of us with fatigued conditions have learned the hard way that ignoring the body’s signals and pushing ourselves can make the condition worse, sometimes dramatically or even irreversibly.
Rest and relaxation are critical, says the ME Association’s guide for people struggling to recover from Covid-19. It sounds obvious, but it is often not easy to do, especially when there is pressure to keep going.
Pacemaker is recommended. It is a widely used first-line strategy for managing fatigue and fluctuating capacity for physical and mental activities. This is where you alternate activities with breaks and only slowly increase activity after finding a safe ‘baseline’ (where your symptoms don’t get worse).
Be flexible with what you are trying to do. Avoid “pushing”, restrain before you are exhausted, and don’t ignore symptoms. Avoid vigorous or prolonged exercise until you have been well for some time. Consult your GP and seek ME guidance online.
If you are employed, try to negotiate a staggered return or flexible work options with your employer so you don’t cause a big back-to-work relapse.
Like ‘Long-term Covid’ patients, people with MS are faced with a medical vacuum in which the condition lacks treatment options and is misunderstood by many healthcare professionals and the public.
For both groups of patients, peer support networks fall into this void. New Zealanders with long-lasting Covid symptoms can join a recently established Facebook group.
We need a greater professional and public understanding of post-viral fatigue and related conditions, and evidence-based treatments. The New Zealand guide should be developed in consultation with healthcare professionals and patients who are already experts in managing fatigue.
Our country has been praised for our response to Covid-19 so far. Moving forward, let’s also be a leader in evidence-based support for people with prolonged Covid and other fatigue conditions like MS and fibromyalgia.
Louise Thornley is a freelance writer and researcher on public health issues, with a background in public health research and policy. She currently works part time for Radio New Zealand and the Porirua City Council.
This story was originally posted on RNZ.co.nz and is being republished with permission.
