‘This is absolutely not in your head’: FT readers share their struggles with long Covid

Long Covid has been dubbed a public health crisis hidden inside the pandemic by medical experts. More than 100m patients worldwide are estimated still to be suffering from debilitating symptoms 12 weeks or longer after diagnosis.

Our explainer on what is known about long Covid elicited hundreds of comments from readers online and replies to our posts on social media.

Patients suffer from a number of different symptoms, the most common of which are fatigue and breathing problems. Commenters shared their own experiences of long Covid; their symptoms have ranged from loss of smell and taste to fevers, fitness struggles and “brain fog”, for a duration of up to almost two years.

While a great deal about the causes remain unknown, women, people with obesity and those who were on invasive mechanical ventilation are thought to be more likely to develop long Covid.

Scientists are in the early stages of hunting for treatments but a few products are in the pipeline. Some readers also shared measures that have helped them, as well as their hopes that this crisis will result in more research on, and medical breakthroughs for, other conditions.

A range of reader comments on the article that appeared on our website and replies to our Twitter posts are published below. We invite you to continue the conversation in the comments.

Nearly two years of symptoms

I’ve had long Covid for almost two years now. I still have no sense of smell and my taste buds are hardly functional. It’s not getting any better and I’ve had to adapt, the net result is I eat less as I don’t get much satisfaction from any food anymore. That is bad and I can live with it, the loss of smell is far worse, that emotional connection with memory is gone — it’s as if part of me has died. I’m otherwise very fit, under 40 with no previous medical issues. Doctors don’t have an answer. — Grumpz, via FT.com

Impacted my entire life

I got Covid in July 2021. I was 34, no pre-existing health problems, never smoked, very healthy diet, lots of exercise and not overweight. I had had one jab at the time and have now had my second jab.

My long Covid symptoms are still very bad and currently have a chest infection which has made the symptoms even worse. I have private health care, but they have no idea how to treat me, despite going in and out of hospital for five months for lots of different tests.

I could not even climb a flight of stairs for three months. I had brain fog. It was scary. I would be in the middle of talking and totally forget what I was saying or had previously said. Night times are still bad. High fevers, weird dreams.

The fatigue is the worst. I wake up most mornings feeling hungover despite giving up the booze (which has actually helped). Some mornings I feel fine but others it takes me an hour to feel anywhere near human. It has impacted my entire life. I have had to give up most intense exercise and any social life. I have no scarring but my lungs are only working at 45 per cent with black spots all over them. It has been a horrendous experience. — Mr PJT, via FT.com

Night and day

The vivid hyper realistic dreams are something that shocked me. Plus the fact it can sometimes take four hours to get upright and effective after waking isn’t something most people understand. — OhMyOhMy, via FT.com

Fatigue and fitness

Fatigue comes and goes. As for fitness? I’ve gone from cycling 250 miles a week to about 20 miles a week walking. Hopefully it will return.

My loss of smell means I haven’t had to endure new puppy eau de chien but have almost poisoned the family with off chicken! — DrugHunter, via FT.com

A doctor’s take

The morning hangovers, insomnia, and really vivid dreams. Fatigue that’s like being unplugged. I was a very healthy triathlete before I got Covid.

My symptoms peaked at four to six months and there has been gradual improvement to the point where at 12 months, provided I’m relatively careful, I can live almost normally. I’m still not able to exercise, however.

I’m a doctor and have been surprised by some of the ignorance of my colleagues. This is absolutely not in your head. Just because medicine cannot yet explain it does not mean that it doesn’t exist. — NW3doc, via FT.com

One year on

My partner contracted Covid in December 2020 and suffered long Covid symptoms for most of last year. Now finally she seems to have emerged from its grip after 12 months.

Getting private treatment last summer at a cost of £100 an hour from a breathing specialist seems to have been worth the money. They have provided a plan of exercises (and an explanation of what was wrong).

Her two line managers were no help at all. They, against instruction from the HR dept, have constantly bullied her to return to in-office work, including a simplistically rigid return-to-work schedule. They disregarded two occupational health reports (presumably because their conclusions weren’t what they wanted to hear or pass on to their own senior managers). The resulting stress has caused flare-ups and possibly delayed her recovery. — ricadus, via FT.com

Change of diet

Yes, long Covid is a pain, but there may be a relatively easy way out. I suffered from it for months after infection in March 2020. Experimenting on myself, I reestablished my prior health (even better now than before).

I start the day with Wim Hof Method Breathing and cold showers, good intake of standard supplements (B-complex, C, D3/K2, Zinc, Magnesium, Selenium) plus Quercetin, Resveratrol and N-Acetyl Cysteine (NAC).

My diet consists now almost only of bio-organic food, I eat a lot of fruit and vegetables, much less meat/proteins and unhealthy fats. Of course, this is not medical advice, but you may try at home. — Castor e Pollux, via FT.com

Consequences for the workforce

Long Covid is going to cause significant economic challenges as millions are left under-productive due to long Covid. Employers, business groups and governments need to plan for this output shortage now. — Guest, via FT.com

Possibility of more research

I just hope this stimulates a new wave of research on post-viral chronic fatigue syndrome and produces positive outcomes. CFS has been around for many years and there are probably many millions of sufferers globally. — Eumustbejoking, via FT.com

Range of symptoms

I nearly died of severe Covid and pneumonia in March 2021, I still have tightness of the chest, wheezing and shortness of breath and crippling fatigue . . . I think this is long Covid. I don’t know how or when I will feel normal again. — @Suemc64S on Twitter

Progress for one patient

I have long Covid. My doctor/Covid clinic has been targeting symptoms management and have diagnosed me with CFS/ME. I take a small dose of ADHD meds in the morning and a small dose of sleep/pain aids at night. It’s been a slow go but it seems realistic that I rejoin workforce in 2022 — @nvcanucklehead on Twitter

Early retirement

It’s well over 12 months since I had Covid. I’m still breathless, tired & got brain fog. I’d like to know the answer. I had to retire when I’d planned to work as long as possible, I was always very fit before it. — @christenebooboo on Twitter

18 months later

I’m at nearly 18 months. Fevers several times a day. Fatigue, lung tissue damage, it’s all real. — @ToxiclownRob on Twitter

Silver lining

With lots of scientists around the world working on this, I wonder if we will get an answer/cure for other autoimmune diseases, since the evidence points toward long Covid being an autoimmune/inflammatory issue. That could change millions of lives; quite the silver lining. — @TheBlondePI on Twitter

*Comments have been edited for length, style and clarity


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