Fatigue and limited neural endurance have been major “MS” symptoms for me since perimenopause.
Very complex story made short, I recently joined two EBV groups. Same for those experiencing reactivation, although they have symptoms.
Here’s the kicker - so do I now! Mavenclad gave me those naive b cells and I have a legit immune response. It’s not enough, and I’ve not been able to clear it, BUT! With no antiviral since Mavenclad, I’d been progressing (walker and wheelchair). This time, my decline was preceded and punctuated by swollen glands, intermittent fevers and chills. I’m back on valacyclovir as of last week (Infectious Disease/Immunologist) who said the one - two punch of having covid then starting Mavenclad likely got the ball rolling again.
However, in reality Mav has rebooted my immune system so it’s speaking in a regulatory sense again!
So for those who have “failed” Mavenclad - this could be a thing. Or who are experiencing terrible fatigue still. I had been able to finally drop the antiviral, but with an IRT you can get repopulation of EBV from the epithelium, unlike the constant destruction from a B cell DMT. (All my theories from 2018 - amazing to see this all coming out lol). So although I dropped it December 2021, I slowly started crashing this year - wheelchair by May.
I’m grateful that Mavenclad gave me actual symptoms because I no longer have the unicorn doctor who diagnosed me in 2018. He treated my ms progression and fatigue as EBV symptoms to get the proper testing done.
If someone has a history of EBV reactivation, staying on an antiviral (life?) may be a thing. He is willing to try famcyclovir - I’m watching your project. I did some searching the other day and learned that normal, healthy controls do not shed virus. I do know some with MS who have MS with zero fatigue and the doubt this is a thing for them.
This inability to deal, great fatigue seemed to correlate with secondary for me. And by treating it in 2018, I ended up strongly in the relapsing camp once again. This dance with EBV - it’s a thing. N=1 here too. 🤣
By day 5 1000 mg Valicyclovir, my wheelchair and walker are no longer necessary in the noise. My vestibular system has recovered. Im frighteningly deconditioned but I’ve been here before - I’ve got this. My new doc did PCR testing and will do it again in September as he is quite intrigued as well.
Not Covid-19 but Cellulitis in my case. Had one instance at the end of March and a recurrence at the end of June 2022. I've previously had instances of Cellulitis in my lower leg but not since MS has really taken hold of my system. I note similarities with your comments of pwMS contracting Covid-19. Of most significance are:
a. Temperature spikes above 40C caused a shutdown of motor control, going from someone who walks with a stick to someone unable to get out of bed or even turn over unaided. Cognitive jelly!
b. Recovery phase. My infectious disease team were caught out by my extremely slow recovery from the March incident, both in terms of dispatching the infection and the healing of the leg wounds. I reached the end of a course of antibiotics and after a few days it was apparent the infection was taking hold again and subsequent courses of antibiotics ensued. In fact, I think my most recent recurrence (28 June) is most likely a re-establishment of the existing infection, rather than a new instance. The ID Consultant has doubled the duration of the course of IV antibiotics with an option to extend further.
c. Loss of condition. I was just about getting back to normal level of activities following the March outbreak when I succumbed to the latest outbreak. Mobility levels have taken a step change down but I'm hoping it's not inherent in the MS trajectory and I can recover some of the lost function.
In concluding, any infectious disease is an extra hazard for a pwMS and there is perhaps a lack of understanding, or to be kinder, an unpreparedness from other areas of medicine to adjust for the more fragile physiology of pwMS when devising treatment plans. I know you're all very busy already but there is a message to spread amongst other departments in hospitals of how to approach pwMS.
Thanks for this timely post Gavin. I've always thought myself in great health aside from MS and have learned to pace my life to handle MS fatigue reasonably well. Recent covid19 infection has hit me hard and even now at day 12 I'm far from right. The heat and perimenopause are doubtless not helping.
Hope you are back to scoring Amazing and Genius on Spelling Bee real soon!
Very interesting new clues. If you divide MS in different components; BVL/SCVL, SEL, relapses,. Can EBV be the driver of all these components or will some be hit and run? Is there a reason to believe that pwMS are more susceptible to long covid? I haven't had covid but I know a young person with long covid who is still recovering. Covid really reminds us viral infection can cause serious health problems in healthy people. So sad seeing nurses on the TV telling they aren't being able to work after 2 years of long covid which has serious financial consequences. Really struggling with some kind of arrangement for these people in the Netherlands.
Right at the start of the pandemic I did a short Twitter thread on dealing with fatigue as I saw the similarities - mostly drawing on my experience of recovering from glandular fever as that is still the worst fatigue I have ever suffered from. It is very interesting to see what I have felt (quite literally in my bones) to be true being confirmed by science.
I don't have long-covid related fatigue Prof G but I would like to wish you a speedy recovery and hope you manage to rest as best you can. Take good care. 🧡
I have just listened to a number of your podcasts. I was searching for views on managing fatigue in this heat. I found a lot of information. Thank you for explaining many issues in fairly straightforward words. I have progressive MS. I am not sure how long I can stay on my DMT. (I am 56) I am interested in your view on AHSCT vs mitoxantrone or trying to start another DMT which might halt my progression/enable recovery of some motor skills. (Cladribine or Natalizumab.)
First was Delta variant in Oct, which my daughter caught it in school. Despite masks/avoidance, I tested pos 4 days later. Had a slight fever, mild cough. I slept 3 days, on 4th day I woke up feeling better. Then nasal passages started to burn & I lost smell/taste. Both returned 10 days after.
In Apr, I had terrible congestion, slight cough & tested pos again! I was tired, but not fatigued. I felt like I had a cold for a few days. I was given monoclonal antibodies. I felt better but still tested pos for 3 more days.
My neighbour has Long Covid & her symptoms/issues similar to MS: fatigue, pain in legs/hips, difficulty walking very far, unsteady & needs a cane outdoors. She had to resign from teaching primary school.
The Telegraph ran an article Tue 13/7 written by Long Covid sufferer, re:methods she has tried, and the uselessness of NHS long Covid clinic (no clinical trials so no evidence based recommendations yet).
Hi Prof, I hope the fatigue is starting to lift and you're feeling a bit better. Just a quick thought I had while reading your article... I took part in the 2013 trial with Raltegravir. It was probably the last time I had no fatigue and my cog fog improved so much, I was able to return to work.
It could just be a coincidence but it was the best I'd felt for a whole year.
Hi I had Covid twice. First time was just like an MS relapse - was so weak and bladder problems worsened so i spent 2 days sleeping on bathroom floor as too weak to crawl back to bed! Took 3 weeks to recover enough to get dressed and several more weeks to be "back to normal".
2nd time was mild just like a normal cold, so even with MS it only took a couple of weeks to pass.
BUT The combined effect has been definite deterioration on all aspects. It does seem to be very similar to the fatigue of long Covid.
All my MS symptomes are worse eg Mobility & balance have deteriorated as well as fatigue ... but most worrying is the brain fog. I had to learn the words of a song recently and it was totally impossible. Even when not tired the cogs are just not spinning at the same speed as they were pre-covid.
Is that just old age, MS or Covid related?!
Will be interesting to see the forthcoming MRI scan results. Traditionally they dont show any changes despite me feeling like I have declined (smouldering MS?) and did not even show new legions after what everyone agreed was clearly a relapse (which was largely overcome via steroids and physio).
Hope you feel better soon (although I am secretly pleased the world will now understand MS fatigue better thanks to so many people experiencing Covid!)
Jul 11, 2022·edited Jul 11, 2022Liked by Gavin Giovannoni
First I am sorry you are going through this. I have always wished that there had been more emphasis and more information given to the public about the full effects and potential long term problems caused by Covid and not have the virus sold as a "bad cold", or just dangerous to the old and immune compromised but no real threat to younger people.
My friend who has ME and I with MS both have had fatigue for a decade with no real support apart from "pace yourself". She has had Covid and said although it was brutal, its not as bad as long term unrelenting ME fatigue. Our only wish is that now so many are affected by fatigue, Cog-fog and other similar symptoms, that these symptoms will be taken more seriously, there will be more research into this, there will be different approaches to fatigue, and not just written off as "all in your mind".
As her ill health was triggered by limes disease and I had EBV when younger, looking at anti infective elements as forms of treatment would be a great step forward. As with the break through treatment of TB decades ago, we often have the tools there it just takes one person to use them with their patients to change the treatment of us all for the better.
Good luck and I hope that you make a full recovery
Hi Professor G, I’m so sorry to hear you’re going through this. The cognitive issues have been the most exasperating and panicking part of MS for me. It became impossible for to continue my work (law) between that and extreme fatigue. I’ve managed to avoid Covid thus far, however, when I heard of cognitive issues with Covid, I wondered if people realized how seriously and significant brain processing issues are. You mention puzzles. My ability to complete the Times Sunday crossword and acrostic went from fun to onerous, my reading ability slowed in a weird way, timed word games became totally frustrating. I’m wishing you a complete and speedy recovery, as well as sleep! You are needed!
Hi Gavin, this is me right now! I have RRMS and one of my most common symptoms is fatigue, particularly cognitive fatigue. I have recently had my second bout of covid 19 and my first symptom was massive fatigue, which I put down to an MS flare, as I clearly had an infection but repeated covid tests were negative until a week later. I was too late to get the antivirals that really helped me last time (Paxlovid?), and though the cough etc is now gone I am still struggling with fatigue, your description being similar to my experience. When I had the Paxlovid last time, afterwards I felt better than I had for a long time, so really fed up I missed it this time. Hope you are staring to feel better. You need to stop work and rest!
Fatigue and limited neural endurance have been major “MS” symptoms for me since perimenopause.
Very complex story made short, I recently joined two EBV groups. Same for those experiencing reactivation, although they have symptoms.
Here’s the kicker - so do I now! Mavenclad gave me those naive b cells and I have a legit immune response. It’s not enough, and I’ve not been able to clear it, BUT! With no antiviral since Mavenclad, I’d been progressing (walker and wheelchair). This time, my decline was preceded and punctuated by swollen glands, intermittent fevers and chills. I’m back on valacyclovir as of last week (Infectious Disease/Immunologist) who said the one - two punch of having covid then starting Mavenclad likely got the ball rolling again.
However, in reality Mav has rebooted my immune system so it’s speaking in a regulatory sense again!
So for those who have “failed” Mavenclad - this could be a thing. Or who are experiencing terrible fatigue still. I had been able to finally drop the antiviral, but with an IRT you can get repopulation of EBV from the epithelium, unlike the constant destruction from a B cell DMT. (All my theories from 2018 - amazing to see this all coming out lol). So although I dropped it December 2021, I slowly started crashing this year - wheelchair by May.
I’m grateful that Mavenclad gave me actual symptoms because I no longer have the unicorn doctor who diagnosed me in 2018. He treated my ms progression and fatigue as EBV symptoms to get the proper testing done.
If someone has a history of EBV reactivation, staying on an antiviral (life?) may be a thing. He is willing to try famcyclovir - I’m watching your project. I did some searching the other day and learned that normal, healthy controls do not shed virus. I do know some with MS who have MS with zero fatigue and the doubt this is a thing for them.
This inability to deal, great fatigue seemed to correlate with secondary for me. And by treating it in 2018, I ended up strongly in the relapsing camp once again. This dance with EBV - it’s a thing. N=1 here too. 🤣
By day 5 1000 mg Valicyclovir, my wheelchair and walker are no longer necessary in the noise. My vestibular system has recovered. Im frighteningly deconditioned but I’ve been here before - I’ve got this. My new doc did PCR testing and will do it again in September as he is quite intrigued as well.
Totally forgot to say - feel better SOON and if that fatigue continues, I’d get both a full thyroid panel and EBV testing done. :)
Fascinating. You’re lucky that you have such good doctors.
Thank you for this information. I hope you recover completely and quickly!
Hi Gavin
Not Covid-19 but Cellulitis in my case. Had one instance at the end of March and a recurrence at the end of June 2022. I've previously had instances of Cellulitis in my lower leg but not since MS has really taken hold of my system. I note similarities with your comments of pwMS contracting Covid-19. Of most significance are:
a. Temperature spikes above 40C caused a shutdown of motor control, going from someone who walks with a stick to someone unable to get out of bed or even turn over unaided. Cognitive jelly!
b. Recovery phase. My infectious disease team were caught out by my extremely slow recovery from the March incident, both in terms of dispatching the infection and the healing of the leg wounds. I reached the end of a course of antibiotics and after a few days it was apparent the infection was taking hold again and subsequent courses of antibiotics ensued. In fact, I think my most recent recurrence (28 June) is most likely a re-establishment of the existing infection, rather than a new instance. The ID Consultant has doubled the duration of the course of IV antibiotics with an option to extend further.
c. Loss of condition. I was just about getting back to normal level of activities following the March outbreak when I succumbed to the latest outbreak. Mobility levels have taken a step change down but I'm hoping it's not inherent in the MS trajectory and I can recover some of the lost function.
In concluding, any infectious disease is an extra hazard for a pwMS and there is perhaps a lack of understanding, or to be kinder, an unpreparedness from other areas of medicine to adjust for the more fragile physiology of pwMS when devising treatment plans. I know you're all very busy already but there is a message to spread amongst other departments in hospitals of how to approach pwMS.
Graeme
Thanks for this timely post Gavin. I've always thought myself in great health aside from MS and have learned to pace my life to handle MS fatigue reasonably well. Recent covid19 infection has hit me hard and even now at day 12 I'm far from right. The heat and perimenopause are doubtless not helping.
Hope you are back to scoring Amazing and Genius on Spelling Bee real soon!
Very interesting new clues. If you divide MS in different components; BVL/SCVL, SEL, relapses,. Can EBV be the driver of all these components or will some be hit and run? Is there a reason to believe that pwMS are more susceptible to long covid? I haven't had covid but I know a young person with long covid who is still recovering. Covid really reminds us viral infection can cause serious health problems in healthy people. So sad seeing nurses on the TV telling they aren't being able to work after 2 years of long covid which has serious financial consequences. Really struggling with some kind of arrangement for these people in the Netherlands.
Sorry it got you!
Right at the start of the pandemic I did a short Twitter thread on dealing with fatigue as I saw the similarities - mostly drawing on my experience of recovering from glandular fever as that is still the worst fatigue I have ever suffered from. It is very interesting to see what I have felt (quite literally in my bones) to be true being confirmed by science.
I don't have long-covid related fatigue Prof G but I would like to wish you a speedy recovery and hope you manage to rest as best you can. Take good care. 🧡
I have just listened to a number of your podcasts. I was searching for views on managing fatigue in this heat. I found a lot of information. Thank you for explaining many issues in fairly straightforward words. I have progressive MS. I am not sure how long I can stay on my DMT. (I am 56) I am interested in your view on AHSCT vs mitoxantrone or trying to start another DMT which might halt my progression/enable recovery of some motor skills. (Cladribine or Natalizumab.)
I had Covid19 twice!
First was Delta variant in Oct, which my daughter caught it in school. Despite masks/avoidance, I tested pos 4 days later. Had a slight fever, mild cough. I slept 3 days, on 4th day I woke up feeling better. Then nasal passages started to burn & I lost smell/taste. Both returned 10 days after.
In Apr, I had terrible congestion, slight cough & tested pos again! I was tired, but not fatigued. I felt like I had a cold for a few days. I was given monoclonal antibodies. I felt better but still tested pos for 3 more days.
My neighbour has Long Covid & her symptoms/issues similar to MS: fatigue, pain in legs/hips, difficulty walking very far, unsteady & needs a cane outdoors. She had to resign from teaching primary school.
The Telegraph ran an article Tue 13/7 written by Long Covid sufferer, re:methods she has tried, and the uselessness of NHS long Covid clinic (no clinical trials so no evidence based recommendations yet).
Hi Prof, I hope the fatigue is starting to lift and you're feeling a bit better. Just a quick thought I had while reading your article... I took part in the 2013 trial with Raltegravir. It was probably the last time I had no fatigue and my cog fog improved so much, I was able to return to work.
It could just be a coincidence but it was the best I'd felt for a whole year.
Suzanne
Hi I had Covid twice. First time was just like an MS relapse - was so weak and bladder problems worsened so i spent 2 days sleeping on bathroom floor as too weak to crawl back to bed! Took 3 weeks to recover enough to get dressed and several more weeks to be "back to normal".
2nd time was mild just like a normal cold, so even with MS it only took a couple of weeks to pass.
BUT The combined effect has been definite deterioration on all aspects. It does seem to be very similar to the fatigue of long Covid.
All my MS symptomes are worse eg Mobility & balance have deteriorated as well as fatigue ... but most worrying is the brain fog. I had to learn the words of a song recently and it was totally impossible. Even when not tired the cogs are just not spinning at the same speed as they were pre-covid.
Is that just old age, MS or Covid related?!
Will be interesting to see the forthcoming MRI scan results. Traditionally they dont show any changes despite me feeling like I have declined (smouldering MS?) and did not even show new legions after what everyone agreed was clearly a relapse (which was largely overcome via steroids and physio).
Hope you feel better soon (although I am secretly pleased the world will now understand MS fatigue better thanks to so many people experiencing Covid!)
Prof G, be nice to yourself and take a break and rest!! As usual very interesting. Thank you
So sorry to hear you've got covid.
Hope you recover and return to full strength as quickly as possible.
I tested positive last Friday after returning from a short trip to Dublin.
Fatigue is my main symptom currently, not helped by the Sahara-like temperatures.
Just returned from a Xevudy/Sotrovimab infusion at Watford General Hospital.
Wishing us both well.
First I am sorry you are going through this. I have always wished that there had been more emphasis and more information given to the public about the full effects and potential long term problems caused by Covid and not have the virus sold as a "bad cold", or just dangerous to the old and immune compromised but no real threat to younger people.
My friend who has ME and I with MS both have had fatigue for a decade with no real support apart from "pace yourself". She has had Covid and said although it was brutal, its not as bad as long term unrelenting ME fatigue. Our only wish is that now so many are affected by fatigue, Cog-fog and other similar symptoms, that these symptoms will be taken more seriously, there will be more research into this, there will be different approaches to fatigue, and not just written off as "all in your mind".
As her ill health was triggered by limes disease and I had EBV when younger, looking at anti infective elements as forms of treatment would be a great step forward. As with the break through treatment of TB decades ago, we often have the tools there it just takes one person to use them with their patients to change the treatment of us all for the better.
Good luck and I hope that you make a full recovery
Hi Professor G, I’m so sorry to hear you’re going through this. The cognitive issues have been the most exasperating and panicking part of MS for me. It became impossible for to continue my work (law) between that and extreme fatigue. I’ve managed to avoid Covid thus far, however, when I heard of cognitive issues with Covid, I wondered if people realized how seriously and significant brain processing issues are. You mention puzzles. My ability to complete the Times Sunday crossword and acrostic went from fun to onerous, my reading ability slowed in a weird way, timed word games became totally frustrating. I’m wishing you a complete and speedy recovery, as well as sleep! You are needed!
Hi Gavin, this is me right now! I have RRMS and one of my most common symptoms is fatigue, particularly cognitive fatigue. I have recently had my second bout of covid 19 and my first symptom was massive fatigue, which I put down to an MS flare, as I clearly had an infection but repeated covid tests were negative until a week later. I was too late to get the antivirals that really helped me last time (Paxlovid?), and though the cough etc is now gone I am still struggling with fatigue, your description being similar to my experience. When I had the Paxlovid last time, afterwards I felt better than I had for a long time, so really fed up I missed it this time. Hope you are staring to feel better. You need to stop work and rest!