Glimmers of Hope: Post-COVID Syndrome Research

Sep 2 4:35pm | Greg Vanichkachorn | @drvan | Comments (13)

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.

Interested in more newsfeed posts like this? Go to the Post-COVID Recovery blog.

Very important study, and yet small N, no control group, and expectancy effect may be at work, yet this is a very promising study and worth others following up on and Long COVID clinics to explore. There is precious little to help the many who have been seriously struggling with little or no support. Yes many unknowns but not enough time, financial support or media attention given to the serious suffering of so many. We can do better and we should do better. Any further studies on Naltrexone, please let us know and if any other tx for ME/CFS and POTS please keep us posted. Those with Long COVID illness are effecting their own mental health, by not being heard and helped, or given priority, and it is effecting their families, their employment, our economy and in extreme ways their own mental health and that are so many others. Add to this the facts, that there are more females, and those in 40-65 range and we may have outdated sexism going on – this needs to be addressed. Thank you to the Mayo Clinic! Diane Bridgeman, Ph.D.

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I wonder if it would work for post COVID vaccine auto immune issues???

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Interesting article, however, I would like a study with respect to the mental problems many have faced once they have conquered this malady. As a Psychologist, I have counseled my share of survivors, who are currently battling the after effects of isolation, perceived rejection, and gloomy future. Many are angry at the way they were treated, as they were threatened by others, regarding distance, masks, etc. I believe that the whole thing was a concerted effort by the powers that be for the primary purpose of total control of the populace, and eventual conditioning of of same.

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Thank you for this update.
I am hoping you will comment on the double-blind study published recently in Nature/Scientific Reports about hyperbaric therapy for long covid patients. It showed remarkable improvement for those who received the oxygen therapy. I realize this is a costly and time-consuming treatment. However, I would love to have you views about what the hyperbaric study indicates about long covid's impact on the brain and the possibilities for treatment that it seems to offer.
P Gordon

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@kga

I wonder if it would work for post COVID vaccine auto immune issues???

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Good question.

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I'm sorry but western medicine is missing the point entirely. We need to treat the ROOT CAUSE of long-haul Covid, not just throw prescriptions at every symptom and malady. Since western medicine treats each system of the body as separate, and only treats symptoms one by one, it will be a LONG TIME coming to find any answers (if ever).

Many people have found GREAT relief from long-haul Covid by working with holistic practitioners who assess the whole body — by greatly reducing inflammation, heavy supplementation of key nutrients, bringing the nervous system back into balance instead of hyperstimulation/overdrive (chiropractic care, vagal nerve reset). It would be nice if regular doctors were paying attention because many people have had really excellent results with these methods.

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@denglish19

I'm sorry but western medicine is missing the point entirely. We need to treat the ROOT CAUSE of long-haul Covid, not just throw prescriptions at every symptom and malady. Since western medicine treats each system of the body as separate, and only treats symptoms one by one, it will be a LONG TIME coming to find any answers (if ever).

Many people have found GREAT relief from long-haul Covid by working with holistic practitioners who assess the whole body — by greatly reducing inflammation, heavy supplementation of key nutrients, bringing the nervous system back into balance instead of hyperstimulation/overdrive (chiropractic care, vagal nerve reset). It would be nice if regular doctors were paying attention because many people have had really excellent results with these methods.

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Hi. So I take LDN and have for a few years. The thing with it is it actually works holistically. In a very low dose, it shuts down your adrenals for about 3 hours while you sleep. After that your endorphins kick into high gear and becomes the response similar to a runners high. Helping reduce pain. It's so cheap, no drug companies want to do research! There is lots written about it online and millions are starting to take it. It's been known to cure Parkinsons, MS and even some cancers. There is a huge long list of medical problems it's been thought to help. It resets your adrenal glands. There is a pharmacist in FL who has his whole family on it. I spoke with him for an hour as I researched it for nearly a year before stating it.

You can't take any pain medicine when on it as this low dose med blocks the effects. I came off for surgery and didn't get right back on so now I've been on it for almost two years again. It's definitely worth looking into if you treasure wholism. Our adrenals are a mess. All of us. More and more illnesses are being found to be autoimmune. This is a really good treatment worth trying for autoimmune conditions. It's just been approved for CRPS for which there is no treatment. Helps fibro etc. I don't know about this study but please research it and don't eliminate it thinking it just another drug. It's an anti-drug when used in tiny doses. It kind of functions like a homeopathic in my mind. Give a little to spark a response. Check it out, seriously. NOT the 50mg! And naltrexone 50mg is not used to reverse and overdose. Totally different drug. This is taken daily like the old Antabuse when the person has to want to stop using but it's the anti-methadone.

People who take the full 50 can actually die trying to get high. You can't get high on it so the chances of an overdose is higher as they can "die trying." You have to be willing to quick all opioids to use it.

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In the middle of editing, it stopped letting me edit so here is the final post. A little different than above.

Hi. So I take LDN and have for a few years. The thing with it is it actually works holistically. In a very low dose, it shuts down your adrenals for about 3 hours while you sleep. The lower the dose the better. After that your endorphins kick into high gear and becomes a kind of "runners high" in that your endorphins go into overdrive. Helping reduce pain. It's so cheap and old, no drug companies want to do research! No money in it.

There is lots written about it online and millions are starting to take it. It's been known to cure Parkinsons, MS and even some cancers. There is a huge long list of medical problems it's been thought to help. It resets your adrenal glands. There is a pharmacist in FL who has his whole family on it. I spoke with him for an hour as I researched it for nearly a year before stating it. Very knowledgeable but there are secrets to it. And it's becoming so popular many pharmacies are mixing their own and might not be using short acting, and pressed the right way and potentially bad powders from bad overseas manufacturers. There is no brand name anymore, it's all generic so you can't just assume it's all equal as it's all the rage and unlike Stan (pharmacist) in FL, some don't know how to do it right.

You can't take any pain medicine when on it as this low dose med blocks the effects. I came off for surgery and didn't get right back on but now I've been on it for almost two years again. You don't always know it's actually helping until you come off sometimes so people stop after a month. It's a long game treatment. It can take even 2 years to start helping so any short study won't work and even comparing it to a control group is useless as all people have adrenal issues so it's not about an "illness" to cure in a month. I can't imagine any study that would show it works as you really need to plan on a ten year study with illnesses and without. The how many on it (%) didn't get cancer that the % of the gen pop did. That kind of thing.

Definitely worth looking into if you treasure wholism. Our adrenals are a mess. All of us. Children too. Stress. Adrenal insufficiency esp which is rarely diagnosed by western med but is real like I'm sure you know.

More and more illnesses are being found to be autoimmune. This is a real treatment worth trying for autoimmune conditions. It's just been FDA approved for CRPS I think (only off label use approval for LDN – some hope for a disease for which there is no treatment. Helps fibro etc.

I don't know about this study but please research it and don't eliminate it thinking it's just another drug. It's an anti-drug when used in tiny doses. It kind of functions like a homeopathic in my mind. Give a little to spark a big response. Check it out, seriously. NOT the 50mg! And naltrexone 50mg is not used to reverse an overdose. It does not remove an opioid from your body. Totally different drug. This is taken daily like the old Antabuse where the person has to want to stop using. Kind of the anti-methadone.

People who take the full 50 can actually die trying to get high. You can't get high on it so the chances of an overdose is higher as they can "die trying." You have to be willing to quick all opioids to use it.

Please research it.

I am not giving endorsement for the use of a med. This still needs to be ordered by your doctor and not many doctors understand even what it is. My doc has down I take 50/day so my insurance company probably thinks I'm a drug addict. As a nurse I mix it myself so 30 pills, about $20 lasts me about a year and a half! Best of luck all. I'm all about LDN as you can tell. It's hope for the hopeless.

But it's a long game. If you are not willing to give it more than a year, then I would say don't bother.

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@dianebridgeman

Very important study, and yet small N, no control group, and expectancy effect may be at work, yet this is a very promising study and worth others following up on and Long COVID clinics to explore. There is precious little to help the many who have been seriously struggling with little or no support. Yes many unknowns but not enough time, financial support or media attention given to the serious suffering of so many. We can do better and we should do better. Any further studies on Naltrexone, please let us know and if any other tx for ME/CFS and POTS please keep us posted. Those with Long COVID illness are effecting their own mental health, by not being heard and helped, or given priority, and it is effecting their families, their employment, our economy and in extreme ways their own mental health and that are so many others. Add to this the facts, that there are more females, and those in 40-65 range and we may have outdated sexism going on – this needs to be addressed. Thank you to the Mayo Clinic! Diane Bridgeman, Ph.D.

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Think sexism comment is off base. First in terms of the basis of frustration experienced by either male or female from what I I hear it is similar. Maybe post covid is sexist in that it disproportionately affects females, but you have to provide more evidence that broadly the medical community is dismissing it because of that.

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A lot of good post that capture the patient impact. When reading the article I first noticed that only Mayo patients could participate in their upcoming study. This was similar to my request to get into the NIH Long Covid study – they only wanted participants close to their facilities so being sick in Northeast Connecticut precludes me from virtually all studies because of convivence of the program. If I lived in Boston, DC or NY no problem but apparently, I was discriminated on the basis of milage. Additionally, to get into a long covid recovery you have to have a referral from your primary care doctor to get in (Apparently the requirement of the care provider – not my insurance) and I have a doctor that believes in the stick your head in the sand to see if it goes away rather than actually do anything to investigate or treat it. So many of us are sitting around imagining our lives are quickly being extinguished while the medical industry sits back and does nothing.

Is this a huge conspiracy as one poster implies? Is it a political position to hide the impact and cost of actually investigating and treating long covid because if it became public, reelection would be doubtful, or is it insurance related to keep their expenses down or finally is it the ineptness of our Medical field that prevents them from exploring and doing even the most minimal effort to acknowledge and basically suggest potential mitigation.

Has anyone out there been given even the slightest investigative testing, a placebo, or even the minimal non evasive treatment to mitigate the symptoms, much less cure them?

Covid made the top 3 "Killers List" behind Heart Atack and Cancer last year – If you were found to a potential candidate for either of the number 1 or 2 on this list – do you think your doctor would be advising you to -"lets not verify it – why don't we sit around and do nothing – I'll see you in three months – you can pay the bill at the front desk on your way out." And one wonders why we are upset.

Treatment update – my pcp eventually gave me a referral to a Neurologist Physc on Monday – can't wait ask him the same questions and see if he has a kumbaya feel good cure.

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@lbyrd02

A lot of good post that capture the patient impact. When reading the article I first noticed that only Mayo patients could participate in their upcoming study. This was similar to my request to get into the NIH Long Covid study – they only wanted participants close to their facilities so being sick in Northeast Connecticut precludes me from virtually all studies because of convivence of the program. If I lived in Boston, DC or NY no problem but apparently, I was discriminated on the basis of milage. Additionally, to get into a long covid recovery you have to have a referral from your primary care doctor to get in (Apparently the requirement of the care provider – not my insurance) and I have a doctor that believes in the stick your head in the sand to see if it goes away rather than actually do anything to investigate or treat it. So many of us are sitting around imagining our lives are quickly being extinguished while the medical industry sits back and does nothing.

Is this a huge conspiracy as one poster implies? Is it a political position to hide the impact and cost of actually investigating and treating long covid because if it became public, reelection would be doubtful, or is it insurance related to keep their expenses down or finally is it the ineptness of our Medical field that prevents them from exploring and doing even the most minimal effort to acknowledge and basically suggest potential mitigation.

Has anyone out there been given even the slightest investigative testing, a placebo, or even the minimal non evasive treatment to mitigate the symptoms, much less cure them?

Covid made the top 3 "Killers List" behind Heart Atack and Cancer last year – If you were found to a potential candidate for either of the number 1 or 2 on this list – do you think your doctor would be advising you to -"lets not verify it – why don't we sit around and do nothing – I'll see you in three months – you can pay the bill at the front desk on your way out." And one wonders why we are upset.

Treatment update – my pcp eventually gave me a referral to a Neurologist Physc on Monday – can't wait ask him the same questions and see if he has a kumbaya feel good cure.

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I've had basic tests and they all come back normal my GP sends me to the neurologist they do more tests that's fine then my neurologist sends me back to the GP then the GP sends me back to the neurologist back and forth back and forth four times. Wasted my money and time

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@glennathill

I've had basic tests and they all come back normal my GP sends me to the neurologist they do more tests that's fine then my neurologist sends me back to the GP then the GP sends me back to the neurologist back and forth back and forth four times. Wasted my money and time

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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.

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