It's an interesting discussion. Interesting also in how the medical world has shifted -- there was widespread denial that there was a post-lyme syndrome, yet now we see medical centers rapidly opening post-COVID clinics.
The truth is that you're likely both correct. Some people do seem to have a clear post COVID syndrome. As was mentioned above, someone has a patient who was otherwise active and healthy, got a moderate case of COVID, and now has severe dysautonomia and is extremely limited. One of my partners got COVID very early in the pandemic, was moderately ill at home (not admitted) and recovered -- but his recovery was very slow and to this day he says he is not the same. He still comes to work, does his job, and is otherwise pushing through -- but his lung capacity does appear to be somewhat diminished. When you have friends, family members, colleagues, or patients whom you know well who end up with these types of problems, you tend to be a believer.
But some of this is certainly nocebo effect. People know that you can get a post covid syndrome, and so any new vague symptoms they develop after covid get blamed on covid. We have no gold standard test, the symptoms are all over the place, and no way to tell. Almost certainly a small number of people are outright frauds, demanding disability.
How much is "real" and how much is the power of suggestion? It's impossible to tell. More physicians now believe in a post-lyme syndrome -- not a chronic infection, but a chronic immune problem similar to post-covid.
Or, is this all Sick Building Syndrome? I'm old enough to have practiced through that. The theory was that people were getting sick because of poor ventilation in office buildings and fumes from carpets and plastics. Ultimately it was discovered it was highly infectious -- through social connections. Talking to someone on the phone about it made them more likely to have it. Ultimately the whole thing was relegated to hysteria.
I think the comparison to chronic pain above is apt. When a patient complains of chronic pain, there's nothing except their word about it. We have no pain-o-meter. There's no blood test, imaging study, or other physiologic test to determine if they "really" have pain. Current practice is to accept that the patient is in distress, and try to help them as much as possible. Medications to control symptoms, behavioral therapy, psychological counseling, etc. There is no cure, but we stand by our patients as best we can. The same can be said for long COVID.
Or, maybe we're only making these problems worse by doing so. Tell patients to move on with their lives, deal with their symptoms, etc. Are we enabling them to continue to be in the sick role? Are the studies showing changes in patients with post-covid showing real damage? Or have we just created tests that are so sensitive, we see signal where there really is only noise?
Since I can't tell the difference between those with true post-covid syndrome and nocebo effect, I treat them all the same. I tell them that their experience is personal and unmeasurable. I can't prove they have long covid, or don't. There's no test. Whether they have it or not, best option is to try to help them get better. Time alone may help. as may some adjunctive treatments such as PT, OT, CBT, and others. Medications may help with symptoms somewhat but will not cure them. Opioids are a huge negative.
Disability paperwork is a challenge. In these types of cases I describe patient symptoms, fill out forms honestly. I never say "yes, disabled" or "no, not disabled". If paperwork needs something like this or more details, then they get referred to Occ Med. Which I realize is a cop-out on my part, but it's where I draw the line.
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