1. < Post-COVID Recovery

Glimmers of Hope: Post-COVID Syndrome Research

Sep 2, 2022 | Greg Vanichkachorn | @drvan | Comments (90)

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.

26 Reactions

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

bonniefielding | @bonniefielding | May 2 3:26pm
In reply to @c1john "@bonniefielding did you start with 7 or 14 mg?" + (show)
@c1john

@bonniefielding did you start with 7 or 14 mg?

Jump to this post

I purchased the 14 mg and cut them in half.....1/2 patch every 24 hrs 🙂

REPLY
1 reply
c1john | @c1john | May 2 3:31pm
In reply to @bonniefielding "I purchased the 14 mg and cut them in half.....1/2 patch every 24 hrs :)" + (show)
@bonniefielding

I purchased the 14 mg and cut them in half.....1/2 patch every 24 hrs 🙂

Jump to this post

thank you!

REPLY
bonniefielding | @bonniefielding | May 2 3:32pm
In reply to @anniliz "I have had severe asthma for many years. When I got Covid in October 2022 I..." + (show)
@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

Please try something different - it sounds just like what I was doing..... symptom-wise. Start taking a baby aspirin every night before bed and start 1/2 Nicotine patch every day - see if it helps.....I was about to give up too but am back to my life now....please try.. Bonnie

REPLY
margaretamada | @margaretamada | May 3 7:23am

I think physicians are so conditioned to think in terms of diagnosis and cure that when they are presented with something which can’t be simply diagnosed and can’t be cured many or most of them don’t want (and can’t) deal with us. I was so fortunate to have a PCP who herself had severe Long Covid. It forced her to retire, but I never had to deal with that skeptical look or “I don’t really want to deal with you” look. All of us end up having to do so much research on my own and little by little finding what helps. Including for that awful LC insomnia !

REPLY
cantek | @cantek | Aug 14 11:59am
In reply to @dianebridgeman "Very important study, and yet small N, no control group, and expectancy effect may be at..." + (show)
@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

And all so secret!
I called Jacksonville and they have no space.
So I guess we just let people suffer?
How about sharing the study and opening studies at ALL teaching hospitals????

REPLY
1 reply
lkirnbauer | @lkirnbauer | Aug 15 1:37pm
In reply to @denglish19 "Appreciate your response but I healed long Covid long ago! Like 2 years ago... And whenever..." + (show)
@denglish19

Appreciate your response but I healed long Covid long ago! Like 2 years ago... And whenever I get re-exposed (which I can feel pretty quickly), I know exactly what to do. But I certainly hope others are finding the information that they need. MANY of us have recovered...

Jump to this post

I’m so happy for you that you recovered from Long Covid, but it would be helpful to me and others here as to what you did to regain your taste and smell. I’m going on 2 years without taste or smell and it would be great if you could share. Thank you!

REPLY
mclelland1958 | @mclelland1958 | Aug 16 5:10am
In reply to @cantek "And all so secret! I called Jacksonville and they have no space. So I guess we..." + (show)
@cantek

And all so secret!
I called Jacksonville and they have no space.
So I guess we just let people suffer?
How about sharing the study and opening studies at ALL teaching hospitals????

Jump to this post

My PCD referred me to University of Florida Integrative
Medicine 7/30/24. I have a Zoom meeting this afternoon. The staff are amazing, so helpful.
I am not sure how it’s going to go, but I am hopeful.

REPLY
2 replies
lkirnbauer | @lkirnbauer | Aug 16 8:28am
In reply to @mclelland1958 "My PCD referred me to University of Florida Integrative Medicine 7/30/24. I have a Zoom meeting..." + (show)
@mclelland1958

My PCD referred me to University of Florida Integrative
Medicine 7/30/24. I have a Zoom meeting this afternoon. The staff are amazing, so helpful.
I am not sure how it’s going to go, but I am hopeful.

Jump to this post

What were their responses to your symptoms? I’m assuming you’ve had this Zoom already as it’s now August. Can you please share what was told to you? We are all struggling here and any information would be helpful. Thank you.

REPLY
3 replies
cantek | @cantek | Aug 16 10:55am
In reply to @mclelland1958 "My PCD referred me to University of Florida Integrative Medicine 7/30/24. I have a Zoom meeting..." + (show)
@mclelland1958

My PCD referred me to University of Florida Integrative
Medicine 7/30/24. I have a Zoom meeting this afternoon. The staff are amazing, so helpful.
I am not sure how it’s going to go, but I am hopeful.

Jump to this post

https://web.cvent.com/event/11825c60-cdb2-446b-adcd-c1ea9e40368f
NIH link to Recover TLC Symposium in September to discuss all working interventions and future research.

REPLY
cantek | @cantek | Aug 16 11:01am
In reply to @lkirnbauer "What were their responses to your symptoms? I’m assuming you’ve had this Zoom already as it’s..." + (show)
@lkirnbauer

What were their responses to your symptoms? I’m assuming you’ve had this Zoom already as it’s now August. Can you please share what was told to you? We are all struggling here and any information would be helpful. Thank you.

Jump to this post

https://web.cvent.com/event/11825c60-cdb2-446b-adcd-c1ea9e40368f
This is NIH’s upcoming conference ( free) to discuss successful interventions and future research.

I am an RN with Long Covid and doing my own research survey.
I’m thing of starting a blog to share what has worked for me so far, all research based by NIH and Pub Med.
I called UF Integrative and couldn't get in until mid October!

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.