How to treat Long Covid as a brain-based (psychosomatic) illness
Oddly, there are no other articles online about this?
See my previous article on psychosomatic contributors to Long Covid.
See my previous article on how “psychosomatic” can mean faulty neural circuits and central governor, not just depression/anxiety.
Here’s my advice … take it or leave it!
Again, this should not be construed as me implying Long COVID is all psychosomatic. It’s not an either/or. It may be psychosomatic for some people and not others. Some people may suffer from both an organic illness and have psychosomatic contributors on top of that.
In rough order of importance:
Understand the CBT model and methods for chronic fatigue
Cognitive behavioral therapy (CBT) theory and methods for chronic fatigue are very well developed and have been validated in numerous RCT studies. There are several books on it - I own the one for clinicians, but there’s one for patients too that looks good. I recommend starting by reading the PACE trial CBT handbook for patients - the diagram on page 21 is especially important to understand:
It’s not at all necessary to read the entire thing or do all the exercises, but it’s important to understand the basic theory. Understand negative illness beliefs, “all-or-nothing” (“boom-and-bust”) behaviour patterns, and how they can perpetuate chronic fatigue. By understanding CBT theory early on you can lower your chances of developing long-term ME/CFS.
Update: right after the intial publication of this post an RCT was published showing CBT has a beneficial effect for Long Covid patients. There’s a lot of variation in the response - some people in the study had their fatigue completely cured, others were not helped at all. Overall though the CBT group did substantially and statistically significantly better than the control group, and the results were sustained six months after CBT treatment ended. Here are the seven factors the authors identify that perpetuate fatigue: “1) a disrupted sleep-wake pattern; 2) unhelpful beliefs about fatigue; 3) a low or unevenly distributed activity level; 4) perceived low social support; 5) problems with psychological processing of COVID-19; 6) fears and worries regarding COVID-19; and 7) poor coping with pain.”
Commence graded exercise
Note (added 1/8/23): as with everything on this list, graded exercise may not work for everyone. There are surveys where people with people with ME/CFS report “it made my condition worse” but they are biased and not well controlled. That said, there are risks here, namely overdoing exercise can trigger post exertional malaise leading to a down-spiraling of your condition (the feedback loop mentioned above is relevant here). However, there’s plenty of science to back up GET and the risk benefit analysis suggests its worth trying for a few months. See what I wrote here and this list of RCTs for context. I may write more as there is a very vocal group of people online who are very against GET.
If you’re past the three month mark since you got Covid, then it’s time to start graded exercise. (I’d be very cautious doing it earlier, and definitely don’t try it in the first month if you’re dealing with significant symptoms). For the first three months I did graded exercise, it consisted of walking and very gentle yoga like yin yoga. First I walked a mile. The next day I didn’t manage to walk much at all. So then I cut to just a quarter mile. After a few weeks I got to where I was walking about a half mile each day. Then eventually I got up to where I could walk a mile every other day without feeling utterly exhausted afterwards. I stayed at basically around that level for several months. The important thing is to keep pushing yourself, slightly, and do some form of movement every day. Don’t overdo it though and don’t stress out too much if you regress. A lot of people exercise, feel crappy the next day and then assume they got struck with “post-exertional malaise”, are “exercise intolerant” and therefore shouldn’t try exercise. Your recovery will not be linear, accept that. If you just rest all the time, you will rapidly decondition and your condition will get worse – there is a lot of evidence from studying glandular fever patients with chronic fatigue and ME/CFS patients that backs this up. If you have a very intense fear of exercise or have to stop because of muscle pain, it may be helpful to work with a physical therapist. About four months into Long Covid I did a cardiopulmonary function test which involved running on a treadmill. It showed that my heart was healthy. (That wasn’t something I was worried about, but my doctor wanted to rule out cardiovascular damage). The process of being forced to vigorously run on a treadmill helped me get over some of my anxiety around exercise and was useful at the time for that reason. I also did one session with a physical therapist which helped me get over my anxiety about vigorous exercise.
Stop reading Long Covid articles
You’ve most likely already read enough articles about Long Covid. Many articles in the press exaggerate the risks of the condition and are based on sloppy science. Other articles are written by ME/CFS organizations which are not legitimate medical orgs and are biased towards pushing a narrative that Long Covid is the same as ME/CFS. Reading these articles will cause stress and anxiety. Then there are people claiming that all sorts of wacky treatments helped them. Ignore those. There’s also scientific articles - these can be somewhat helpful but most of the science is very poor quality. Check in with yourself as to whether you feel better or worse after reading about Long Covid. Perhaps the most sensible thing is to limit yourself to reading about Long Covid one day a week.
Read stories by people who have recovered
Instead of reading stories written by people who are still sick, read stories by people who have recovered. In addition to making you feel more hopeful, you may learn some useful psychological techniques from those stories (all of the recovery stories I’ve seen used psychological methods). My recovery journey started after listening to Dr. Paul Garner talk about his recovery. Check out the “long Covid” tag on Recovery Norway for many stories. I also recommend the Positively Covid Youtube channel.
Check your sleep
Sleep issues are very common in Long Covid. When you aren’t as active during the day, you sleep less deeply at night. Do not nap during the day. Maintain a consistent bedtime and don’t lay in bed for hours in the morning after waking up. Read about CBT for insomnia (CBT-i). Even if you think you are sleeping well it’s good to understand the principles of CBT-i . Here is the PDF for a very concise CBT-i workbook that I like. A good easy to read book on how to sleep better is The Sleep Solution. Another good book based on CBT-i research is Say Goodnight to Insomnia. This is a commonly prescribed CBT-i workbook. Another sleep book to consider is Sound Sleep, Sound Mind — it was written before CBT-i and is focused more on emotional regulation (I can’t recommend it highly but I felt it’s worth mentioning since it’s a different approach than CBT-i). Only consider sleeping pills as a last resort for bad insomnia (sleeping < 6 hours a night straight for over 10 days). Definitely read Scott Alexander’s magnificent article on how to treat insomnia.
Consider actions to reduce stress. Consider going on sick leave from work for a few months. Consider paying someone to clean your house. Some things you can consider for relaxation are simple breath meditation, prayer, gentle yoga, Tai Chi, taking a hot shower or bath, sauna, float tanks, massage, sipping a hot beverage, listening to music, and cuddling with an animal or person. As of May 2023 there’s only been one other RCT validating a treatment for Long COVID in addition to the CBT one mentioned above, and it utilized aromatherapy. I have no idea how aromatherapy is supposed to work and if it reduces stress or does something else, but I’m throwing it in here as something that might be potentially useful.
Treat any co-morbid mental health issues
The big one here is depression, which can easily be triggered by Long Covid and then perpetuate the syndrome. A lot of people think depression means you're sad and think negative thoughts a lot. This is often part of it, but it can also manifest as just feeling tired, foggy, “meh”, and cognitively sluggish all the time. See a therapist to get help if you think you might have depression, preferably a CBT or DBT one (CBT/DBT are more action-oriented forms of therapy that will start working faster). Consider taking an antidepressant (I don’t recommend these as first-line treatment though due to side effects. Wellbutrin is probably the one with the least bad side-effect profile, but talk to your psychiatrist). See Scott Alexander's posts on things for depression, his overview of depression, and this post on things for anxiety. Recognize vicious cycles and think about how to break them:
Get rid of digital trackers and stop obsessive symptom checking
Many people with Long Covid are spending large parts of their day focusing on their symptoms. This tends to magnify those symptoms and cause anxiety. Heart rate trackers are very noisy and unreliable and will create anxiety. Do not use them unless instructed to by a doctor. Smart watch readouts like the Garmin “body battery” will confuse you and cause anxiety. Sleep trackers are at best 70% reliable and are bound to cause anxiety. Stop using them! Try going a week without any trackers and see if you notice any difference in your anxiety, stress, and fatigue levels.
Check for iatrogenic harm
“Iatrogenic” means “brought forth by a healer” in Greek. Consider what medications and supplements you’re taking and if they are causing more harm than good. Some of these may be things that you started before Long Covid that are no longer serving you well. One of the most popular Long Covid drugs, Benadryl, will dry out your mucus membranes and make you cognitively sluggish. Curcumin is generally crap and may mess with hormones. Curcumin often contains piperine, which can interfere with any other medications you’re taking by changing how your intestine absorbs drugs and inhibiting liver enzymes. NSAIDs can disrupt sleep quality and aren’t good for your stomach lining. Quercetin is crap. Cromolyn sodium and other mast cell activation drugs are known to have a very high side effect burden. Ashwagandha can do weird things to your hormones when supplemented chronically. Niagen, l-methyl folate, and CoQ10 can affect your sleep quality and induce insomnia. Anything with autologous stem cells is extremely dangerous and probably not backed by any science. SSRIs are arguably overprescribed, in general, or prescribed at too high a dose. Sedating tricyclics like amitriptyline, which are sometimes prescribed by ME/CFS specialists, are a nightmare and will cause sedation during the day and a lot of side effects. Antipsychotics are very much overprescribed and may cause cognitive problems and possibly even permanent brain damage (for instance Seroquel is often prescribed for sleep and Abilify is prescribed for a bunch of stuff it shouldn’t be prescribed for).
Understand psychosomatic effects better
This is for people who are more analytical systems thinkers and want to understand things at a theoretical level. You can start by reading my blog post “psychosomatic contributors to Long Covid”. For a deep dive into a more hypothetical psychosomatic theory see my other blog post. Other subjects you can read about are placebo/nocebo effects, hypnotherapy, somatic symptom disorder, psychosomatic theories for chronic pain, and functional neurological disorder. It’s quite a rabbit hole once you get into it.
See if you can go six hours without complaining to anyone about your symptoms. Then see if you can go a day. Finally, see if you can go for a week. Getting a bit of sympathy may feel good but its benefits are fleeting. Complaining is exhausting for both yourself and others.
Keep a positive mindset
The placebo effect, also called the expectation effect, is your friend. Your enemy is the nocebo effect and worrying too much about symptoms. Positive thinking can seem delusional, and sometimes it is. Not all delusion is bad, however, a little bit of delusion can be good if it reduces stress and leads to behavioral activation and virtuous cycles that help you recover.
Leave online support groups
These groups are filled with people who complain about their Long Covid all day. There’s often a bad dynamic where people feed off each other’s hysteria. These groups also tend to be dominated by people who have made chronic illness a significant part of their identity, which is not what you want to do. You may be under the impression you are learning useful tips from these groups, but in reality you’re most likely just reading worthless anecdotes. Try leaving any groups you are in for two weeks. At the very least, leaving these groups will free up some time in your day for other things.
Stop professing your illness
Our identity and sense of who we are is partially constructed through our relations with others. Stop telling people “I have Long Covid”.
Appendix: treating the possible biological causes
If you had severe acute Covid, obviously ask your doctor about getting a chest X-ray or other scanning. A cardiopulminary function test and/or EKG can check for damage to the heart and lungs. A test for Epstein-Barr reactivation might be useful if your doctor is willing to order one. At least a few people online have found they had a high degree of EBV reactivation and then had it treated with a course of anti-viral medication. You can try getting a booster, but it seems the possible benefits of this are pretty small (~30% of people report they feel better, ~15% worse, and 55% the same). You can try Niagen and Paxlovid, both of which are under investigation. Guanfacine might help with Long Covid brain fog (possibly by reducing sympathetic activation which is caused by the brain). N Acetyl Cysteine (NAC) (~600mg 2x a day) is super safe, may normalize inflammation levels, is good to take in general, and you’ll be less likely to get infected with any virus while taking it. You can try Urolithin A. You can also try an antihistamine, I recommend one without any anticholinergic side effects (avoid benedryl, doxylamine… start with loratadine then move to fexofenadine and hydroxyzine). You can try an SSRI or psychedelics (not for depression but to reduce inflammation / immune activation). You can try low dose lithium (you can buy lithium orotate on Amazon.). You can try aspirin if you think you have microclots. You can try a nicotine patch or nicotine gum (see this Twitter account). You can try nattokinase if you think you have microclots or persistent virus (see this study but also note its only in-vitro and there are other issues with it).
Other investigational treatments (added 10/12/23):