Breathing problems, fatigue, PEM (post-exertional malaise), nausea, tremors, olfactory disturbances, concentration and cognitive problems, irregular heartbeat, impaired immune system. Life with long covid. Revised october 2024.

I have been on sick leave with long covid since December 2022 after having had the disease twice during 2022 and once in 2023. Dealing with it as a condition and a disease in the face of the Norwegian healthcare system has been a mixed experience. Reading Norwegian newspapers today, one can get the impression that long COVID is both a limited phenomenon and a vague condition that has been little researched. In addition, there are few options for treatment.

If you look abroad, for example to England and the USA, the picture is quite different.

To start with a disclaimer: if you’re looking for proof that long COVID was planted by medical science or created by the vaccine, I recommend you stop reading. This blog is written from the perspective that long covid is a multisystemic disease, triggered by a virus, and explains some of the consequences for a body suffering from it.

For those who want a gateway to much of the research that has already been done, this report is recommended: https://evidence.nihr.ac.uk/themedreview/living-with-covid19-second-review/

I’m also not going to deal with whether the virus is laboratory-created or the result of transmission from the animal kingdom to humans. That’s not to say I don’t have my own opinions and beliefs about these things, but they easily lead to distractions from the main topic here: a description of living with the condition and personal experiences on the road to a slow recovery (plus I’m personally sick and tired of conspiracy theorists using a serious illness to ride their own hobby horses).

In the podcast The Long Covid Sessions, the two English journalists, news workers and long covid victims Noreen Jameel and Emily Kate Stephens do their best to gather and provide insight into some of the things that are happening in international long covid research, or as they write themselves “..to reach a growing community of long covid sufferers looking for answers in a sea of uncertainty”. And the scope of research is as diverse as the symptoms those suffering from the disorder report.

To show how diverse the international research taking place on long covid is: Some of the things that have been observed and are therefore being researched in connection with the disease include

• the effect of the virus on the mitochondria in our cells and thus the cells’ ability to produce energy (read more here)
• the effect of the virus on the T-cells in the body and thus the immune system (read more here and here)
• the relationship between the virus and sex hormones,
• virus’ effect on the Autonomic Nervous System,
• The virus’ association with cognitive impairment,
• The virus’ effect on endothelial tissue (the tissue that forms the walls of our blood vessels) and contribution to the formation of “micro clots” – microscopic lumps in the blood in the blood vessels, which in turn affects oxygen uptake. read more here. and here
• The impact of the virus on other viruses lying dormant in the body, especially the Epstein Barr virus,
• The impact of the virus on the digestive system and the lymphatic system.
• The possible impact of the virus on the acid-base balance in the body, thereby contributing to increased anaerobic cell respiration, which in turn may be one of the causes of PEM symptoms (read more here).

There is a reason why the disease is referred to as a multi-systemic disease: the virus has the ability to affect so many parts and systems of our body that it should be little surprise that the outcome and symptoms are correspondingly variable.

A search for “long covid” on Pub.med yields over 25,000 hits, so for those who like to read in depth rather than relying on Instagram posts or Facebook posts, there is plenty to do.

A lot of research is being done, but so far the large sums of money to support treatment options have not been forthcoming.

However, being long COVID sick in Norway is a far cry from being long COVID sick in the States, as we have sick pay schemes that make it possible to survive.

And if you’re lucky enough to have a reasonable (and shared) budget, it’s also possible to buy access to the private healthcare market, which so far seems to be more interested than the public healthcare system in keeping up with current international research on long COVID.

However, there are certain exceptions. Among other things, I have been lucky enough to be part of the MINIRICO research project at Ahus (Akershus university Hospital), which tested a combination of medical and cognitive intervention in the treatment of long COVID.

My most prominent symptoms are exhaustion or fatigue, olfactory disturbances, sudden increased palpitations, wheezing, PEM and cognitive challenges or the somewhat unclear condition “brain fog”.

Exhaustion or fatigue is a common long COVID symptom that can appear in all situations both related and unrelated to physical activity. Where normal tiredness leads to sleep and recovery, fatigue is a persistent feeling that all batteries are completely depleted and the body and brain go into collapse. Lights and sounds become overwhelming and the brain is no longer able to filter out important from unimportant input. Fatigue is a good reminder of how natural we take it to have energy for everyday tasks. For a musician, it was interesting to realize how much energy playing the piano actually requires and how it feels to try to play with empty batteries, not least that hand/eye coordination was suddenly completely impossible.

PEM or post-exertional malaise is one of the most common symptoms and is also a symptom (of several) that the disease shares with diseases such as ME – chronic fatigue syndrome, where exercise leads to illness, usually increased fatigue and muscle pain, although fever also occurs. Many people link this symptom to a dysfunction in the cells’ mitochondria, the parts of a cell that are supposed to produce energy, and there is now research showing demonstrable changes and damage in muscle tissue after exercise in long COVID patients compared to healthy test participants, which could conceivably be contributors to PEM symptoms.

https://www.nature.com/articles/s41467-023-44432-3

There is also reasons to believe somthing in the blood is affected and producing all of the problems, see more here (this is by the way an amazing blog that brings forth a lot of recent research regarding the crossover symptoms between ME, CFS and long covid)

The physical consequence of PEM for me was a couple of days of fatigue, nausea, fever and muscle spasms after relatively calm workouts that I would previously have had no trouble completing in addition to being exhausted from walking up the stairs. PEM was completely unknown to me until a doctor at a private clinic mentioned it in passing. It has also proved to be reasonably unfamiliar to several GPs I’ve spoken to. After all, exercise is something that in the vast majority of cases contributes positively to recovery, both mentally and physically. So the call to “exercise more” is often one of the first you hear when you have somewhat vague symptoms of illness, and the experience of not being able to exercise is often interpreted as a lack of motivation.

This, in turn, can sidetrack the whole situation with shame, pressure, guilt and multiple attempts that end in worsening symptoms.

For me, the smell disorder consists of one type of smell that appears every time I exert myself. After several attempts to map the smell, I’ve decided that it’s a mixture of yeast and burnt sesame seeds (why exactly that combination is a big mystery), and it always appears in connection with an attempt to be active, which has led to my partner constantly being peppered with questions about whether I smell. (It was easy to imagine that the smell was in the sweat). You can get paranoid by less.

Difficulty breathing comes and goes regardless of activity, like a tight band around the chest, and an increased heart rate that is often followed by a somewhat vague feeling of stress also occurs more or less irregularly. It can feel as if the normal fluctuations of a nervous system that adapts to a daily variation of stress levels have suddenly shifted gears and increased the outcomes in both directions. Because of this, dysregulation of the autonomic nervous system (the part of our nervous system that regulates breathing, heart rate and stress reactions) is also thought to be a key characteristic of long-covid. This is also one of the reasons why Ahus included mental intervention in their project because the autonomic nervous system is also possible to influence, something everyone who has worked with somatic stress regulation has experienced.

And then there was “brain fog”. It’s easy to think of brain fog as what anyone can feel when tired or stressed: reduced efficiency, mentally groping for words when you need them, forgetting where you left your car keys… Brain fog as I experience it is all of those things (except that I don’t drive and therefore have never had car keys to misplace), but in addition it also includes what characterizes very many long COVID patients: problems with what are called executive functions; the ability to solve problems, to plan, coordinate and overview, to put together pieces of information into a whole, and generally carry out and complete tasks in the same way and, not least, with the same amount of time as before. The last point is worth noting: when things take more time, it also means that there is correspondingly less time for everything else in everyday life. Which in turn creates more stress.And the need to write lists and create reminders, which in turn requires energy, energy you no longer have.T he MINIRICO project at Ahus included an initial mapping of mental capacity through a number of memory exercises. For someone who has loved games like memory and My Ship Is Loaded With since childhood, it was a strange experience to feel how the post-covid brain suddenly had some significant differences from before.

The most obvious change was the experience of my “batteries” running out unusually quickly, so that from one moment to the next it was like a wall descended in my brain. And the effect wasn’t just on my ability to remember: the exercises also effectively drained everything else of energy, so I fell asleep against the wall in the corridor while waiting for the doctor to show up for the physical tests.

Finally, what probably contributes to the fact that there is so much mistrust around long covid and that so many people who have this struggle to both be believed and helped: sometimes everything is just fine!

Then everything goes very downhill. Then everything is fine. Then everything breaks down, etc. etc. which means that the condition has also been aptly named The Corona-coaster. One day I’m teaching 15 international students anatomy and motion analysis, the next day and week it’s nausea, dizziness, fatigue, disorientation and olfactory disturbances.

How to face all this

My process, which feels like a great deal of stumbling, revolves around the following:

• MORE REST THAN YOU THINK YOU NEED. One thing that seems to be common to a lot of people who have been fortunate enough to experience recovery is that they take recovery and rest seriously. Scheduling rest sessions throughout the day and, most importantly, resting more than you think is necessary. Dr. Wes Ely, Professor of Medicine at Vanderbilt University shared his experiences on this in an episode of The long covid sessions based on his work with long covid sufferers as Director of a Center for Critical Illness and Brain Injury (can be heard here: His advice was to take the amount of rest you think you need and double it. Taking breaks isn’t always easy, but the alternative is worse. Resting and taking breaks also requires prioritization, and the result is a ripple effect in social life, in work tasks, in the number of clients you may have and an endless amount of cancellations and rescheduling, but the importance of rest trumps all (or should, but that doesn’t always happen).
•  DIET. Covid-19 is known to affect the gut microbiome.Researchers also point out that poor gut health appears to be a risk factor for long COVID (more here). Our gut is closely linked to the nervous system via the enteric nervous system, so problems here will have a devastating effect on, among other things, cognitive abilities and emotion regulation. In other words, a weakened bacterial culture in the intestine can create ripple effects throughout the organism. As a result of extensive blood tests and stool samples, I therefore follow a diet that is low-glycemic and anti-inflammatory, which means removing things I react to, planning meals, baking special breads and limiting visits to cafés and restaurants as what can be eaten is limited. The Balder Clinic that I go to has extensive food allergy testing followed by elimination and provocation periods where you first remove everything that has caused reactions and then introduce one and one thing very gradually. This has had an effect, but it takes time. It should also be mentioned that Ahus did not test for any of these things in its pre-project tests.

The importance of gut health is still a relatively new area.

• SUPPLEMENTS; VITAMINS AND MINERALS. Tests I’ve taken have shown that the level of some neurotransmitter substances in the body are not as they should be: adrenaline and noradrenaline are too low, serotonin levels are too low and cortisol levels throughout the day have a reverse profile of what they should have (high in the evening and low in the morning). Neurotransmitters are crucial for memory, focus, emotion regulation and the ability to perform. I therefore take medication to boost my body’s ability to produce these substances myself. In addition, I support it with things that will help this production in a natural way, such as body scan/body meditation, self-hypnosis, breathing exercises, activity regulation and regular cold showers (in addition, I add a lot of rest, sunlight and gratitude exercises).
• BREATHING EXERCISES AND SOMATIC AND MENTAL RESOURCES. Heart rate and breathing are under the control of the Autonomic Nervous System and should therefore be precisely autonomous, i.e. “self-propelled” – it should happen without us having to think about it. When your heart rate suddenly fluctuates and you experience stress reactions that seem to have no logical explanation and mood swings like a roller coaster, all techniques for self-regulation can provide support (breathing exercises, somatic exercises, mental exercises, meditation, focus exercises and more). In addition, it helps enormously to have an external person/support (just being held or having an arm around you is completely invaluable).

My experience has been that such techniques help to some extent, as long as you actually have the energy to perform them, which is not always the case (see next point)

• MEDICATION AND MENTAL INTERVENTIONS. Ahus’ MINIRICO research project is testing a combination of drug treatment with the supplement Nicotinamide Riboside and the technique Mind-body Reprocessing Therapy to support the cognitive challenges of the condition.I was lucky enough to be selected for the group that received both the drug and the cognitive intervention (although I don’t know if the pills I’m taking are the real drug or a placebo as it’s a double blind test).I still use the drug, now bought with my own money, and I still have access to an app packed with good mind-body interventions: stress regulation, activity regulation

I still have access to an app packed with good mind-body interventions: stress regulation, activity regulation, meditation and mindfulness, breathing exercises, self-hypnosis, relaxation, exercises for active reprogramming, informational videos about the knowledge behind the interventions and how these can ideally help support the brain and body. These have all had an effect, but the biggest challenge was to get the doctors to understand that no matter how many aids they crammed into the app, it made little difference on the days when I was lying flat on my back and lifting my eyelid felt like a weightlifting session. In this regard, there is also reason to make a small complaint to Ahus, which equips participants in its project with an app packed with mental aids and videos, but which sets up appointments with a psychologist at intervals of a couple of days, during which you are expected to have implemented both aids and things you have talked about at the appointment. A little more time between sessions would have been more compatible with the reduced level of function that is, after all, the main characteristic of the disease, instead of scheduling sessions based on what is most effective for the doctors and researchers.

No matter what: Long live Ahus for daring to present neurological self-regulation techniques as part of scientific work. Perhaps we can finally dispel the myth that meditation and breathing exercises are only for “the purple ones”.

• EVERYTHING YOU CAN’T CONTROL. Then there are all the things that need to be facilitated in order to be able to do all of the above: contact with NAV and doctors for follow-up and sick leave, arrangements at work, adaptations in work and work tasks, scaling down socializing, trying out a home office and all the necessary connections, cables, screens and rejected network connections, and how to make it work when circumstances arise that throw everything into disarray, such as upgrading the apartment building you live in with 1-2 months of concrete drilling from 8am in the morning that means home office tasks have to be pushed to the afternoon/evening, death in the family, friends and family going through their own challenges and illnesses…

Although it feels like your own life is put on hold when you get sick, that’s not the case with the outside world.

So in addition to the above tips: Here’s the most important advice I’ve received from Ahus:

MAP YOUR VICTORIES, HOWEVER SMALL!

It can be useful to map symptoms and signs of illness in order to manage everyday life, but then you risk thinking that nothing has changed because the same symptoms are still there and with so much fluctuation back and forth, it’s easy to lose track of where you really are on the healing scale. To be able to see the true progression of the disease, you also need to create an overview of your level of function:

what are you able to do today that you weren’t able to do a week/month/six months ago? Despite the symptoms? Although I may still have fatigue, nausea, palpitations, PEM and brain fog, I am able to go for walks in the woods without collapsing on the couch afterwards. I can teach for 3 hours without having to recover for 3 days afterwards.

There are still work tasks I can’t do, but others I am able to do with adaptation. And after starting and writing this article for the last 4 months, I’ve now managed to cobble it together into something resembling a text.

MAINTAIN THE SUPPLY LINES

I can’t change the impact the virus has on my organism, but I can help the body in the fight. Something like a supply line needs to be maintained to keep the troops fit for battle. Illness creates stress, which in turn contributes to increasing the symptoms of the illness. I can support mind and body in the best possible way. It helps to have knowledge about stress and stress mechanisms and how this affects us physically and mentally. It also helps to have the finances to be able to buy private health care when the GP has nothing else to offer but sick leave. It helps to have jobs and bosses that make it possible to organize your work situation. It helps to live in a country with sick pay schemes. It helps enormously not to live alone and to have friends and family who love you and believe in you.

Not everyone is as lucky. The numbsers for suicide among people who have experienced losing their ability to work, job, financial control, social life, family and home are alarming, yet go mostly unnoticed. It’s a silent epidemic where nearly 65 million people worldwide have lost the ability to work to a significant degree https://www.nature.com/articles/s41579-022-00846-2.

It is also a bright spot in the tunnel:

It is striking how many therapists, doctors and researchers are now advocating that the way we meet patients as healthcare professionals must change after the experiences we now have with research on long COVID. That diseases and conditions that span multiple systems and are complex and individual also require individual approaches. And it’s a good idea to start with a more humane approach, a more listening approach. To move away from the counting system and to see people as people and not patients.

It’s worth hoping that something good can come out of this.

PS: This article is an english translation of a blog written in Norwegian. As I don´t have the mental capacity at the moment to proof read the automatic translation I humbly appologize if some things sounds a bit weird in english 🙂