Atrios points me today to a piece in the American Prospect about Long COVID. I know several people with Long COVID and it's no fun. The author of the Prospect article, Maureen Tkacik, also has Long COVID, and it sounds like hers is especially acute.
But the focus of the piece is the incompetence of the medical research establishment and its unwillingness to take Long COVID seriously. The main target of Tkacik's anger is the NIH, which is funding lots of Long COVID research, including a study at New York University:
The NYU effort involved recruiting hundreds of patients who had tested positive for COVID-19, subjecting them to extensive batteries of tests every few months, and building a database to collect and analyze their findings—a fine idea in theory, I guess, but hardly an appropriate first order of business in the middle of a public-health crisis affecting roughly 17 million Americans that has likely removed at least a million from the workforce already.
Some of the smaller initiatives funded by the RECOVER program were even more clueless....
Why is this clueless? It sounds like exactly what you should do—one of the things you should do—when you're fighting a weird disease with shifting symptoms that you need to understand better.
Tkacik mentions that Long COVID has symptoms similar to Chronic Fatigue Syndrome, so that's where the focus should be. Maybe so, but it's hardly a secret that Long COVID and CFS share similarities. That's widely known and accepted by researchers. But where does this get us? Here is Wikipedia's summary of the current state of our knowledge about CFS:
The cause or causes of the disease are unknown. ME/CFS often starts after an infection, such as mononucleosis. ME/CFS can run in families, but no genes that contribute to ME/CFS have been found. ME/CFS is associated with changes in the nervous and immune systems, as well as in energy production. Diagnosis is based on symptoms because no diagnostic test is available.
We don't know what causes it, we have no way of diagnosing it, and only some Long COVID patients have CFS symptoms anyway. What's more, CFS and Long COVID may be similar but it's also clear they aren't the same thing. As for the Epstein-Barr virus, which Tkacik also points to, we don't know what role it plays since everyone has it and only some people get Long COVID. What's more, there are no vaccines for Epstein-Barr and precious few treatments, so it wouldn't help much even if we did identify it as a likely suspect.
In the end, Tkacik quotes only two people. One is her own doctor, who suggests Long COVID might be "psychological." I don't blame her for being pissed off about that, but take a look at the NIH page on Long COVID. It mentions several possible physical causes of the disease with not even a veiled hint that it might be all in your head.
The second person she quotes is an anonymous researcher who says, among other things, that NIH is wasting its money on "voodoo stuff like CBT." But cognitive behavioral therapy isn't voodoo. It might not work out in this case, but it's genuinely effective sometimes—and it might turn out to be a useful therapy for some Long COVID sufferers while we're waiting for more effective cures. I have trouble taking anyone seriously who says stuff like this.
The Long COVID community is widely contemptuous of all the funding for observational studies that haven't yet produced a cure. That's understandable. It's intensely frustrating that medical research takes so long. But it does, and neither the NIH nor anyone else is refusing to take Long COVID seriously. There are currently nearly 10,000 clinical Long COVID trials in progress supported by billions of dollars in funding. Unfortunately, given the history of things like AIDS, CFS, Lyme disease, and so forth, we'll be lucky if we get good treatments any sooner than a decade or two. After all, if the answer were really simple and obvious, we'd have a cure already.
Yeah, the business regarding CBT comes from a place where people think they are being told "you are just imagining the whole thing".
This may be a disease that is somatic, or has a somatic component. Mind and body interact a lot. I do mean a lot. Somatic illness is real illness, but mental illness still has a real stigma to it, and people can easily think that they are being told that they are making it up and just imagining the whole thing or malingering.
That's what seems to me to behind all the anger and disparagement you are describing.
This is a really unfortunate reaction because a mental health problem is a real health problem. Anyone who has ever struggled with a mental health issue can tell you this.
+1
A story as old as time - there must be something to blame and if there isn't a bug, a clot, an aneurysm, or tumor - it must be the person. I think this is where the stigma has its genesis, in the misunderstanding that a person is separate of the biology that creates them.
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CBT is also used in treatment of addiction and ADHD, among other things.
Long COVID is a real problem. I know I'm still not the same. But compare the time frame to our lack of understanding about autism. My son was diagnosed 37 years ago and we still don't understand what is going on.
One of the most common complaints in Long COVID is "brain fog". I don't think there is any doubt that this has, at root, a physical cause, but until that cause and a direct treatment for it is identified, CBT can provide strategies for dealing with the issue.
In a broader sense, although not a frontline therapy, counseling and/or psychotherapy can improve quality of life for people with chronic disease.
Obviously some people had severe cases of COVID that resulted in blood clots, lung and circulatory system damage, etc. This damage can be physically detected and is real.
For those who had less severe cases and no observable permanent damage, is there an iota of evidence that Long COVID is anything more than attention seeking, malingering, and mental health issues unrelated to COVID?
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Long Covid is a messy, difficult syndrome that seems to manifest differently in each patient and I agree with Kevin that a lot of the coverage of it has taken the form of profiling frustrated patients who are angry that the doctors can't come with a cure now for their particular symptoms. There *does* seem to be some links between LC and other mental health issues in some patients, however. So I don't think its completely crazy -- pardon the term -- to suggest that treating LC might partly be about treating underlying, or concurrent, psychological and/or neurological issues. See e.g.: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10290767/
(Bloomberg) -- A 15-day course of Pfizer Inc.’s antiviral Paxlovid didn’t provide significant relief for long Covid patients, researchers at Stanford University found.
Their trial didn’t find a statistically significant difference in the severity of six core symptoms both at 10 and 15 weeks post-treatment between the 102 patients administered the drug twice daily and 53 who were randomized to receive a placebo.
Stanford’s STOP-PASC study attracted interest from almost 800 potential participants. It’s the first randomized clinical trial to test whether a longer course of the Covid medication could alleviate prolonged symptoms including fatigue, brain fog, shortness of breath, and body aches by rooting out the lingering coronavirus remnants thought to underlie at least a subset of people with long Covid, also known as post-acute sequelae of Covid-19, or PASC.
The debilitating condition affects millions of people worldwide, some of whom have been suffering for more than four years, leading to an urgent need for effective treatments.
“This trial’s results do not reject the hypothesis that viral persistence may lead to PASC but they will help inform further studies in this area,” Linda Deng, a clinical associate professor of medicine at Stanford, and colleagues wrote in the study, which was published Friday in the journal JAMA Internal Medicine.
Having read the article referenced by Kevin, I think that more than a frustrated patient looking for answers, this is a case of a not too bright, nutjob libertarian looking to score political points for stuff she clearly doesn't understand, and refusing to take responsibility for her own decisions.
The first paragraph is as good as a big flashing warning sign telling you that the following paragraphs will be rants mostly detached from reality.
Then the complaints about the study she enrolled her kids in shows that she is ranting in bad faith, because every single test, sample, or procedure that her kids would participate in, is explicitly described in the study protocol and would have been explained in as much fine detail as she wanted before she even had the chance to agree to be a part of it, yet she presents it as if things were sprung on her at the last possible second.
Also notable are the other articles cited, which amount to highly misleading or uninformed stuff about supposed NIH cover-ups of a lab-leak origin for COVID and similar garbage. There's some interesting stuff in this article, but I essentially lost interest at that point, since I could no longer trust the source.
Yeah, it's basically an incoherent rant about how no one has solved her problems backed up by the quack community's disinformation.
I found back in the dark ages of the internets when searching for information about back surgery that I was scheduled for, that folks with bad results complain loudly and those with good results don't bother. The lady referenced might be a member of that class.
My experience was better than a co-worker who ended on a morphine pump.
Actually heard an interesting hypothesis on CFS. That the fatigue is caused by damage to the mitochondria.
Anyhow my long covid sympthom is massive congestion. Ever since I got covid and I got a rebound that created 3 days of so much congestion nothing could stop it, everytime I get sick I get much MUCH more congested than pre-covid. At the same time the kid just finished kindergarten so I've been sick a lot the last 2 years. Also got covid because my spouse was careless. Not anything I did.
I heard this too; I actually thought this connection had been well-established. Apparently Covid-19 can attack the mitochondria in the cell, and when they are damaged, the cell essentially has less energy for the remainder of its existence. So it can take up to seven years for these cells to become senescent and die, to hopefully be replaced by one with healthy mitochondria.
So if your brain was attacked, you can expect a few years of brain fog. If your heart was attached, you will sweat a lot and have less energy. And so it goes.
But I thought that heart cells don't make new ones.
Neurons are not, but most brain cells are Glia and they replicate, and heart cells are replaced also. But it all gets slower as we age...
Oh, I think you're wrong about researchers not knowing what causes PASC and CFS. Research in the past two years confirms dysregulation of the immune system.
It's been my theory for a few years now that it's not necessarily that COVID causes PASC; it's that any severe (via naive immune system) infection risks dysregulation of the immune system, resulting in aligned symptoms between PASC, CFS.
I think we can point to the gap in the PASC incidence rates between the vaccinated and unvaccinated as a key clue.
As for treatment, well, I mean it's obvious isn't it? Cytokine storms and inflammation = corticosteroids. There's been a ton of research into the prophylactic use and treatment of PASC.
I swear I posted about this a couple of years ago.
A "Long COVID community" is now a thing? Good grief.
Pretty much all chronic diseases have a community of people who share experiences, treatments, insights, etc. as to how to mange them. Is this so hard to understand?
Well, you know, a few well placed activists would speed up the research.
Around here, high school teachers must have a degree in their discipline and a concentration in education. The problem I've always had with journalists reporting on science (even Science Journalists) is the assumption that "journalist" is an all encompassing field, the philosopher's stone of thinking.
But it isn't. Reporting is not a substitute for some actual knowledge and experience of doing science. One could hope journalists' education could be similar to our high school teachers'. Perhaps they could get a Master's degree.
In SCIENCE! (tip of the hibachi to Duck's Breath Mystery Theater)
Man! That turned out to be a long way to go for a joke. It was much more concise in my head.
I have a master's degree. In SCIENCE.
One problem is that the symptoms are so varied and vague that probably 90% of the people who claim to have long COVID just have anxiety or are tired or have allergies or have any numbers of various issues that they probably always had or would have had, COVID or not.
And yes, I get that this doubt is exactly what people are frustrated about. That doesn’t mean they’re right! There’s no way 5% of the country has long COVID.
I think the problem is that the definition of long covid is so loose that I bet a bunch of people have the symptoms without ever having had Covid.
A friend of mine said he had LC when he had a cough that lasted 3 months after Covid. That's a bunch, but I get a 6 week cough every time I get a cold, so it didn't sound that outlandish to me.
Others obviously have more serious symptoms, but when you read the 5% number, you don't really know how many people have which symptoms.
If she wants to do a real service Tkacik should write an article about research into diseases that affect mostly minorities, or women.
I can't speak to the specific complaints of the article, but I can share some general information. My father suffered from ME/CFS in the 80s, before it had a name. Unlike the many women with similar complaints who were ignored or told the problem was psychological, he was taken seriously, partly because he was a male executive, and partly because he was "lucky" enough to have physical symptoms like a resting heart rate around 120 (jumping to 170+ if he stood up).
For an entire year, he was subjected to about every test imaginable. In the meantime, he could not work, he was exhausted all the time, and he suffered "brain fog" so severe he could not read the newspaper (something he did every day of his life before breakfast before this point and after he somewhat recovered). He could not follow TV more complex than sports or a game show. He had difficulty with conversation. He could not drive. For over a year his life was essentially over, and nobody could tell him what was going on, much less offer any help. At least nobody tried to tell him it was all "in his head" and there was nothing physically wrong.
Retrospectively, our best guesses (plus the best guesses of the doctors of the time): the initiating factor was an insect bite followed by an unusual rash but no other symptoms. The neurologists thought his immune system was attacking his nervous system; he'd been extremely healthy for decades and thus had a strong immune system. I suspect the bite introduced something to his immune system that "looked" enough like parts of his brain that his immune system treated his brain as a foreign invader and went to work. To my knowledge, nobody even attempted to give him something to suppress his immune response.
We know this: a disease can attack and damage parts of the body. The immune system can also attack or damage parts of the body. When that damage happens to the brain or nervous system, it can have wide-ranging effects and be very difficult to detect, and addressing the cause could be useless (if the damage happened in the past and is long-lasting) or vital (if the damage is caused by something happening NOW). Even basic and common neurological disorders can't even be physically diagnosed without an autopsy; there's simply no way to see physical damage to deep parts of the brain even with modern imaging technology.
I will say it is fair to be infuriated when something so bad that it essentially ends your life has happened to you and doctors aren't taking you seriously, and I can see being upset at a few studies being started to determine if Long COVID exists while your life has been overturned by it. Perhaps the expectation that anyone could have long-lasting effects after any illness would be a reasonable place to start and listening to one's patients and trying to help them a better idea for doctors than dismissing patient distress as if all possible diseases and disorders are already well-understood.
Given the casual cruelty of several commentators here on this site, I doubt things have improved much since the 80s. And people in areas underserved medically and without medical coverage are going to be most affected.