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Glimmers of Hope: Post-COVID Syndrome Research
Post COVID Syndrome (PCS) has been part of our language for more than 2 years. Despite that, research on this condition has been progressing slowly. Most of the research in the world has been focused on first figuring out what PCS really looks like and how it affects different populations. While this information is important, many patients are desperate for some news on treatments. Well, today is your day.
In July 2022, a research team from Ireland published their findings on a medication called naltrexone. Naltrexone is a medication that is commonly used to reverse the effects of opioids. For example, naltrexone could be used when someone may have overdosed on a pain medication like morphine. When used for this purpose, the dosage is typically around 50mg. However, when naltrexone is used at very low doses, for example 1-4.5mg, it has shown to work mainly the immune system. With this effect, low dose naltrexone has been used for conditions such as Chron’s disease and chronic fatigue.
In this study, 38 patients with PCS were treated with low dose naltrexone. When symptoms before and after treatment were compared, a statistically significant improvement was found for fatigue, function, pain, concentration, and sleep.
Now, before everyone starts calling their favorite long haul COVID clinic, the study findings need to be interpreted cautiously. As we have discussed before, no research is perfect, and we must go beyond the title to really understand the limitations. First, this study looked at a very small population of patients. The smaller the number of participants, the less reliable the results are. In addition, the results of the group treated with naltrexone was not compared to a group of patients not treated with naltrexone. Without that comparison group, called a control group, we do not know if the reported improvements are due to naltrexone or just due to something completely separate, like the weather or green grass in Ireland. Also, the patients who were treated with naltrexone were aware they were being treated and examined. Just knowing that can sometimes change how someone feels.
Despite all those limitations, I am still excited about this study and others coming down the pike. It represents finally some first steps in treatment research, and it should be a sign of hope for patients with PCS around the world.
At this time, the Mayo Clinic specific post-COVID studies are only recruiting participants that are being seen at Mayo Clinic post-COVID clinics. If you are a patient being seen in Mayo Clinic's post-COVID clinics and would like to participate in research, please email postCovidRSCH@mayo.edu
Learn more about the most recent developments with post-COVID syndrome by following the Newsfeed and discuss your experience in the Post-COVID Recovery discussion group.
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I have my neurological psych next Monday and can't wait for the pep talk - hope he's ready to explain why I'm in his office and what he plans to contribute to the recovery process.
I also had a blood test prescribed by my GP since it was my yearly check-up but it was a standard test rather than a targeted test to look for covid so it was useless - as with anything you have to tell them what to look for and pay accordingly. Mine was my yearly blood draw so my A1C was ok, red & white cell count ok , cholesterol ok .... but nothing on covid because we didn't ask. I understand that if you take a certain blood test within 6 weeks of contracting Covid they can confirm Long Covid - that does nothing for the long covid population that has been battling it for over 2 months.
I'm glad people are seeing good results from this drug. It sounds like one of the rare few that might actually treat a root cause (perhaps over-stimulation/exhaustion of the adrenals?) and that's great.
The same result could probably be found by changing lifestyle and diet. I've known people who have revered MS and other auto-immune conditions -- a lot of it is diet. Yes, our adrenals are a mess. It's not a surprise. We are an over-taxed, over-stimulated, over-worked, over-caffeinated culture. People push themselves to the absolute limit before even thinking of making a change. Of course we have physical and emotional burn out, and our bodies are merely showing us that something is very out of balance when various conditions arise. Treating THIS root cause (the mental, emotional and spiritual) would really be fantastic, because we are complex creatures -- not just physical bodies. But any step in the right direction is a good one, just don't forget mental and emotional health too. It's all connected.
Your last sentence rings true with me. I have had this thought all thru the pandemic. You would think that those of us who survived, and now have long Covid, would be of interest to study.
It was three months after my infection of Covid 19 and pneumonia that I was re- hospitalized, tested, tested and tested then, and it continues, with no results. At least I know my heart and lungs are ok, but it has been a ritual of doctor visits since then. I'm exhausted!
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1 ReactionIn addition to my last comment, I have been staying away from large groups, wearing a mask when out, much like the initial precautions. No one seems to know if taking the 5th booster is safe for those of us with post covid syndrome, or even the flu shot. How susceptible are we to catching Covid again?
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2 ReactionsKaren. I am looking for a group of people that did not have COVID, but are experiencing increased autoimmune issues. I did have the 1st & 2nd COVID Pfizer vaccine shots.
I did have an autoimmune condition prior to vaccine, but have developed issues after taking the vaccine.
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2 ReactionsHello,
To my knowledge, I have not had COVID. However, I was seriously ill and ended up in the ER, but they had no idea what was wrong with me. A year or so later, I took the first vaccine and was so violently ill, that I’ve never taken another one. I had autoimmune issues before as well.
I had my 1st & 2nd shot in January of 2021. I had low platelets before the vaccine, but ended up in hospital when my platelets dropped down to 5,000. I even had to go through Rituximab treatments for four weeks. I was then sent to a surgeon to have my spleen removed, but he chose not to. My platelets are in the 80,000 range now, but holding steady. I’ve had a bone marrow biopsy that was negative. I’ve had a biopsy of some nodules that started coming up this year along side of my spine that came back as a Collagenoma. Now I’m waiting to get a lung biopsy for nodules in my lungs that are increasing. I was in pretty good health & felt great before the vaccines. It has been a nightmare since.
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2 ReactionsWow, that’s a lot! I’m so sorry! I’m doing Rituximab as well, but only 2, 2 weeks apart then 6 months apart. So only 4 in one year. I’m so sorry for all you’ve been through.
Good luck to you. I hope the Rituximab treatments work. Take care of yourself.
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1 ReactionHas there been any results with using Paxlovid for long haul Covid?