Don, I have to strongly disagree with you. What we are seeing with Long Covid may give us a lot of insight into those previous chronic fatigue patients, as their symptoms are so similar, but I can guarantee you this is NOT just "all in their heads".
First of all - we DO have concrete proof of many of the long term damages. Sophisticated heart tests show damage, kidney function is decreased, we know the virus can enter the brain, neurological and dermatological conditions have been observed, GI symptoms occur and the virus can be shed in the gut for months, etc etc.
Second the patients I have seen with serious chronic-fatigue type Long Covid syndrome had no reason to want to be sick or to benefit from being sick. And their symptoms were shockingly similar to what Long Covid patients are reporting online. They are definitely NOT making this up. And frankly the ignorant attitude that they must be, is making many of their lives infinitely worse. Most of these people were very functional in their lives before this hit. Athletes, teachers, high energy people - now one person posted with excitement today that for the first time in 8 months they were able to read a book!
Mast cell activation syndrome (acquired from the virus) seems to play a role in many. Some develop POTS. Other have developed autoimmune conditions triggered by the virus (we have research showing that Covid antibodies target many proteins that are targets of autoimmune disease. ) Some lose large amounts of weight (like 25-50 lbs or more) with no explanation (probably mostly due to malabsorption from the GI effects of the virus, undiagnosed celiac disease triggered by the virus, hyperthyroidism triggered by the virus, or lack of appetite triggered by loss of sense of smell and taste - still for many there's no explanation yet). Some may have adrenal damage from the virus although no one is really studying that well yet. Don't forget that mononucleosis can cause severe fatigue for up to 6 months. Why is it so difficult to believe that a brand new virus might affect some susceptible people for even longer than that?
To everyone out there - if you have a family member or friend who is suffering from this - THEY ARE NOT MAKING IT UP! I hear heartbreaking stories in the Long Covid group of people being abandoned by their spouses or family members just because they think they should be "over it" in two months. Don't do this to them. It's real, it's awful, and we don' know how to treat it yet (like I said before, the antihistamine approach is the only thing I've seen so far that seems to help some people, not all. ) And if they push too hard too soon they almost always relapse. They have to take it slow and gradual as they increase their activity. The athletes struggle with this but almost always pay the price of pushing too hard.
BTW, although I do not specialize in treatment of chronic fatigue syndrome, I do have a couple of patients that I inherited over the years. Both have tried everything in the book to get well. One is maintained on a very weird combination of medications that a previous physician started him on, it was the first thing in ten years that allowed him to function like a human being so I don't mess with it, even though it's unproven. He limps by in his life. The other is a woman who has shown me the photos of herself when she was a wild young thing on a motorcycle. She had many adventures in her life and was always a high energy person. Now she struggles with the simplest activities of daily life.
Neither is neurotic. Neither is benefiting in ANY way from being ill. I pray that we will be able to learn more about their conditions by studying this large group of similar patients that Covid has dumped on our doorstep.
