Glimmers of Hope: Post-COVID Syndrome Research

Sep 2, 2022 | Greg Vanichkachorn | @drvan | Comments (73)

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.

I don't think its curiosity - I think they are motivated to ignore sympthom treatment or causal investigation. I see our government, the insurance industry and finally pharmaceutical as the culprits fighting to keep "Long Covid" as a closet secret. After all, who stands to lose if we recognize Long Covid as real and spend the time and money to treat - care for it? What if Long Covid does more and quicker damage to the lungs than asbestos & Smoking? What if the Spike Proteins interfere with the immune system and inflames old injuries or if Long Covid potentially affects the heart and nervous system and causes clots and strokes? All of the above are potential outcomes with significant science back-up - yet you think the doctors lack curiosity - No I think the only reason they play dumb, is potential liability. I see a lot of lawyers prescribing no care for long haullers.

REPLY
@lbyrd02

I don't think its curiosity - I think they are motivated to ignore sympthom treatment or causal investigation. I see our government, the insurance industry and finally pharmaceutical as the culprits fighting to keep "Long Covid" as a closet secret. After all, who stands to lose if we recognize Long Covid as real and spend the time and money to treat - care for it? What if Long Covid does more and quicker damage to the lungs than asbestos & Smoking? What if the Spike Proteins interfere with the immune system and inflames old injuries or if Long Covid potentially affects the heart and nervous system and causes clots and strokes? All of the above are potential outcomes with significant science back-up - yet you think the doctors lack curiosity - No I think the only reason they play dumb, is potential liability. I see a lot of lawyers prescribing no care for long haullers.

Jump to this post

I hate to think this way, but I’m afraid I agree. I am one month out from my first case of COVID and still recovering and hope I don’t have any long COVID symptoms that persist. But I share your fears because I had a severe case of Lyme Disease which went undiagnosed and untreated (because doctors didn’t take me seriously) and ultimately caused damage to my heart and I had to get a pacemaker. Chronic Lyme is also ignored because the medical community expects you to heal with the tools they have and they don’t know what to do with you if that doesn’t happen. It’s difficult for them to admit they don’t have the answers if a drug or a surgery won’t fix it. And where does that leave people with unresolved medical issues like long COVID or chronic Lyme? In limbo.

REPLY
@lovemypups

I hate to think this way, but I’m afraid I agree. I am one month out from my first case of COVID and still recovering and hope I don’t have any long COVID symptoms that persist. But I share your fears because I had a severe case of Lyme Disease which went undiagnosed and untreated (because doctors didn’t take me seriously) and ultimately caused damage to my heart and I had to get a pacemaker. Chronic Lyme is also ignored because the medical community expects you to heal with the tools they have and they don’t know what to do with you if that doesn’t happen. It’s difficult for them to admit they don’t have the answers if a drug or a surgery won’t fix it. And where does that leave people with unresolved medical issues like long COVID or chronic Lyme? In limbo.

Jump to this post

Oh wow. Chronic Lyme is SO vicious!! And completely ignored. I pray Ling Covid doesn’t go the way of t D’s ( tick borne diseases). A lot of Lyme docs have commented on the parallels to long Covid. So: If you WANT to get furious, see the new Lyme documentary…

REPLY
@car0

Oh wow. Chronic Lyme is SO vicious!! And completely ignored. I pray Ling Covid doesn’t go the way of t D’s ( tick borne diseases). A lot of Lyme docs have commented on the parallels to long Covid. So: If you WANT to get furious, see the new Lyme documentary…

Jump to this post

Called— “The Quiet Epidemic”.
But only if you want to be furious….!!!

REPLY
@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.

Jump to this post

read a paper that suggested post covid fatigue was longer in women particularly peri and menopausal due to changes in oestrogen levels. I agree having seen it that male patients still are more likely to be listened to positively about this and sadly there is a tendency among certain Drs to dismiss females blaming it on stress or hormones but not in the scientific way as above.

REPLY

I have had severe asthma for many years. When I got Covid in October 2022 I became deathly ill and because I had no access to Paxlovid I ended up in bed most of the time pretty much for 4 months . In January 2023 my asthma specialist started me on nebulizer treatments initially 6 times every 24 hours. By May I was down to 2 times a day and for a brief time I was only on my regular inhalers but am now taking 1 nebulizer treatment a day plus my long acting inhaler. But I’m still having trouble with the bad coughing and fatigue. I also experience weird electrical type muscle pain from time to time . I’m so sick and tired of being sick and tired and days I do feel better I have to be super careful not to overdo things or I’m sick again for weeks. I’m in physical therapy to regain strength and balance. I had been benefiting from water exercises several times a week but due to uncontrolled coughing since August 12 have not been able to participate. I’m hoping to get back to that this week if all goes well. Psychologically I struggle a great deal. I have a supportive partner but he really doesn’t get it although he tries…my sense of the future is foreshortened and there have been stretches of time in the past year that I thought I should just get it over with and give up and die. But I’m still here striving to have a life and do meaningful things yet it’s almost a daily battle to stay positive.

REPLY
@anniliz

I have had severe asthma for many years. When I got Covid in October 2022 I became deathly ill and because I had no access to Paxlovid I ended up in bed most of the time pretty much for 4 months . In January 2023 my asthma specialist started me on nebulizer treatments initially 6 times every 24 hours. By May I was down to 2 times a day and for a brief time I was only on my regular inhalers but am now taking 1 nebulizer treatment a day plus my long acting inhaler. But I’m still having trouble with the bad coughing and fatigue. I also experience weird electrical type muscle pain from time to time . I’m so sick and tired of being sick and tired and days I do feel better I have to be super careful not to overdo things or I’m sick again for weeks. I’m in physical therapy to regain strength and balance. I had been benefiting from water exercises several times a week but due to uncontrolled coughing since August 12 have not been able to participate. I’m hoping to get back to that this week if all goes well. Psychologically I struggle a great deal. I have a supportive partner but he really doesn’t get it although he tries…my sense of the future is foreshortened and there have been stretches of time in the past year that I thought I should just get it over with and give up and die. But I’m still here striving to have a life and do meaningful things yet it’s almost a daily battle to stay positive.

Jump to this post

These missives read like my own biography. God I hope something happens soon to give you and all of us relief .

REPLY
@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.

Jump to this post

New theory gathering notice is Nicotine patches for Post Covid. Any info and/or opinion.

REPLY

Good Grief,
I have noticed my Neurologist writes down a few of my symptoms, not a whole lot about my memory impairment, or lack of focus and concentration, fatigue, blurred vision, I wobble around, involuntary arm and leg movements. I break dishes all the time, coffee is spilled all over the my home, because it is spilling our of my cup. There is so much more... so much more. I forgot where I was going with this. Maybe my gut and my brain are apparently in a big fight, so there is that.
Good luck to everyone on our quest to regain some of our health back

REPLY
@frking

I came down with long covid three months after 3 weeks of hospitalization for covid. Now 13 months later I am seeing a major decrease in the symptoms I had.
Be patient as there is not much else you can do. I hope your symptoms subside as mine have.

Jump to this post

Did you do anything specific to address your symptoms, or did long Covid dissipate with time, in its own?

REPLY
Please sign in or register to post a reply.