Dear Blog Reader
I spent 15 minutes on the phone with one of my patients who has secondary progressive multiple sclerosis. She was an avid blog reader but has stopped reading the blog because she can’t stand the constant barrage of posts about COVID-19 and vaccinations and she doesn’t understand the posts anymore. I think some other readers may share her views.
This patient’s real concerns are about her MS and why she has deteriorated so much over the last 12 months. Is it neglect? Is it because she has stopped her weekly physiotherapy and pilates sessions? Is her MS active? The last time we imaged her in late 2019 there were no new lesions on her brain MRI. For your information, she was treated with off-label subcutaneous cladribine 4 years ago having failed interferon-beta and fingolimod in the past.
Has she deteriorated because of her worsening depression? She is lonely and lives alone. Prior to COVID-19, she used to work 2-3 days a week for a charity, with lots of contact with the public; this brought purpose to her life. Now she has face-time calls with her ageing parents once a day.
Is her deterioration due to her poor sleep? Her recurrent UTIs? Or is due to premature ageing?
Has she lost confidence in walking because of repeated falls? She now uses her wheelchair almost all day indoors.
I spent some time explaining to her that as soon as we can we will repeat her MRI and if she has new lesions she may become eligible for siponimod treatment. In the interim, I have referred her for screening for the MS-STAT-2, or high-dose simvastatin, trial and I sent her a link to the following blog post which tries to explain to pwMS why they are getting worse despite being NEDA or ‘inactive’.
EXPLAINING WHY YOU GET WORSE DESPITE BEING NEDA
Does this lady’s story sound familiar to you? Have you also noticed your MS worsening over the last 12 months during lockdown? In addition, are you also COVIDed-out? If yes, any recommendations on what content you want us to cover on the blog would be much appreciated?
Hang in there if you can, the storm is beginning to subside. If you are feeling low I would recommend reading or listening to Charlie Mackesy’s book, ‘The Boy, the Mole, the Fox and the Horse’; it has kept me sane over the last 12 months.
I am thinking of all of you. I know how hard it is but we will get through this together.
Thank you.
Prof G
I would be interested in content regarding the futur of ms. For example I am interested in when the famciclovir trial should begin recruitment. The trial in the usa for the haart trial the timeframe on it ( how long it will last, when should it start and if positive how long for a phase 2b trial to start ). Incoming basic mouse ebv studies that could be game changers in terms of explaining how ebv causes ms. These are a few of my ideas in terms of what content peaks most my interest.
Well that is up to ProfG and how much he wants to post on this…It is his thang. I have no idea about the trials. The humanised mice are interesting, but they need abit more development.
I see and I agree these humanized mice are interesting. Thank you for responding 🙂
The famciclovir trial is recruiting, but this is only to see if it suppresses peripheral EBV shedding. If it does we can then use the data to get funding for a larger trial in MS.
Not sure about the HAART trial; it is being done by the group in Boston.
Well this just made my day. 🙂 This is good news about the famciclovir trial I hope we will get interesting results at the end of the trial. Also any idea as to what the name of the trial is called for the HAART trial in Boston because I am having a hard time finding the trial on clinical trials.gov ?
P.S. Thank you for the update on the situation and also thank you for all this work you are doing for me it means hope for a cure one day
Storms end, and then the next one comes. Once part of the world population is immune, the virus mutations will have evolution/natural selection pressures. What we need to do is limit opening of borders, continue social distancing and focus on developing effective treatments so that we’re ready for the next storm.
Many thanks for that. Yup I’m Covid-out, SPMS and no DMT.
Exercise, exercise and more exercise is my solution and sanity. Its only too easy to let everything go.
Just get out and do it
Yes, use or lose it. This message is not only for pwMS, but the general population as well. Have you seen how unfit/unhealthy the average UK citizen is? We all need to walk-the-talk.
First off, High Dose Simvastatin? With a side effect of joint and muscle pain, one that I experienced on a very low dose (my cholesterol is good but because of T1d & a tiny elevation, they put me on an extremely low dose), I would not be someone jumping up and down to be picked for that trial at all. I have enough pain issues from my MS.
Your patient is Secondary progressive. All the above Covid changes do contribute to her overall health as her mind health is affected & muscle strength weakened. It does not take much for muscles to lose strength & memory. I woke from back surgery & lost full function in my right leg & some temporarily in my left. I never regained full in right, still have partial paralysis.. it only took a short bit of time for my leg to become small & muscle that was there dissappeared. 6 months later I was getting down my stairs by butt sliding each step, getting on my recumbant bike & strapping that leg in foot pedals & forcing that machine to move with my other leg. Eventually I started building up muscle. I work at creating muscle memory daily in it. One day without & it makes a huge negative impact. So yes, she has to continuously find something to keep herself moving even more so than someone without MS. As far as MS itself worsening, yes it sounds like it is. Balance off that bad? That’s nothing to do with stopping exercise unless her balance is because of weak legs.
I personally am NOT annoyed at the Covid19 blog posts as Covid19 virus can affect MS. Also I worry of MS immune response to the various vaccines creating relapses (especially since my very good friend just had a severe response & high fever to dose2 of Moderna). So, the blog posts about the Covid 19 are of help. I suggest that people weed through & pick and choose what they want to read, same as I do with the annoying FB social site (I have to weed or scroll over all the political annoyance posts). Because Covid19 as much as we are all tired of it, affects our MS. And I like reading about how the science of how the b cells & t cells are involved in vaccine response & like the previous latest blog from my favorite blogger Mouse Dr, these t cell responses, or lack thereof may help down the road in our MS responses to figuring Ocrevus.. it’s ALL relevant in the end.
I think people are asking for advice regarding what is going to happen post-COVID. An interesting thought experiment.
Having asked myself the same question in the past year: „why physical degradation during COVID-19 in spite of lacking disease progression NEDA-3”, my personal conclusion was actually simple:
My tracker showed that I had walked 20% less between March and December 2020 because of lockdown. I went late last year for a month on stationary Rehabilitation and my physical checks for mobility were all down about 20%. I spent the following weeks playing catch-up and my exit exams were nearly back to pre-pandemic.
My feeling therefore is that – in absence of other complicating factors – this challenge can be surprisingly linear and could likely be addressed foremost by additional efforts when the opportunities for exercise return. It would however likely imply focused and dedicated engagement from patients and caregiver support. Patients will have to count on the extra support post-pandemic!
Use it or lose it? I was doing 3+ hours a day before going back to work. Now about 3 hours a week. I have noticed the difference.
I know I have moved less during this last winter as I could not access indoor exercise ( I don’t like cold and rain) and now that outdoor opportunities are more available I feel I can make some improvement. However, I am keenly interested in understanding the functional decline so that I can taylor my rehab efforts. Like what is my brain is causing x and or Y. For example, in your NEDA post you mentioned pyramidal tract lesions being problematic and it makes me curious to know why. So I guess it’s good for my overall brain health to be curious and try to under the why. Finding this kind of information, with the depth I am looking for, is hard. Most information, I get from Clinic team, is vague and non specific. I always want to know why even if I can’t fix it. I watch a lot of YouTube videos, Anatomy Ninja is one of my favourites. I know the neurologist and physiatrist don’t have time to give me the Why but that is what I want. Why does that one spinal lesion cause me so much trouble and then how can I compensate for it. I’m not tired of Covid in terms of MS. It’s a fascinating time in terms of knowledge.
I’m for continuing the full range of posts, including Covid.
One aspect of the Blog that’s held true in the five years be been accessing it, is that it’s a tell all, no holes barred site. This is true for the few positive posts you’re able to provide and the zillions of far less positive/downright negative ones. It’s somewhere to come to when you want the best possible lowdown on all things MS related. Covid has a legitimate place in this, particularly as there’s the question of vaccine response, Long Covid and most importantly at this present time: reiterating the reasons why PwMS should have the vaccine.
“it’s a tell all, no holes barred site”
Perfectly said Fi!!!
I agree with this – I appreciate the full range of topics on this blog, including Covid-related ones. In fact, your Covid-related blogs are really helping keep me sane…there is so much uncertainty in life right now that is compounded by so little information about Covid and MS, I return to your blog every time I start spiraling into anxiety to root myself back in the science that you and your team collect and help me interpret. I understand that it can be overwhelming for some, but it is incredibly helpful for me.
That said, in an effort to think about how to please everyone, I’d be fine if you opted to do all of the Covid-related blogs on a specific day of the week or if you separated them into a different mailing list or website so folks could opt out?
I need diversion from everything MS, despite being fully absorbed in every opportunity to learn more about it. So, Covid-related posts are welcome. A varied diet of information makes the MS posts more digestible. Most of all, I loved the horse, but the boy, the fox and the mole too. Even the mole knows we cannot exist on cake alone. Maybe I’ll send the book to my friends, just as I did with “When I Am An Old Woman I Shall Wear Purple,” by Jenny Joseph. Try it. Perfect for International Women’s Day. Thanks for another perspective, Prof G.
Prof G,
Thanks for your post.
The patient case highlighted above is just incredibly sad. It’s no use trying to spin any positives from such a case – there are no treatments to arrest the accruing disability and the future is grim. I have a friend diagnosed a few years before me who is now in an electric wheel operated by the couple of her fingers that still function. 55 years old, children who are at university, no hope of any sort of normal retirement with her husband of 30 years. Lives devastated. We wouldn’t let animals suffer like this! Most of us with MS live in fear of the future – fear of existing like the patient you highlight.
So I like blog posts which give a bit of hope for the future. I’m guessing most readers are interested in:
– your summaries of key highlights from MS conferences (the virtual conferences have been a damp squib in terms of game changing research or trial results);
– posts on what is happening with regard to treatments for smouldering MS. You tantalise us like a striptease artist, but then nothing is revealed. Things often go quiet for years which is frustrating when you have convinced most of us that smouldering MS is likely the real MS;
– posts on EBV as a cause of MS. See point above on smouldering MS. You’ve convinced most of us that EBV is likely the underlying cause / trigger of MS, but then it goes cold again;
– updates on the progress with Team G projects / trials. I’ve lost count of the various ideas eg DODO… are any of these trials being taken forward? Wasn’t NDG running a trial relating to plasma cells?
– I’ve found your posts on brain health particularly useful and I’m a poster boy in terms of following the regime religiously. Your pointers to Vit D supplementation and Alpha Lipoic Acid were very helpful. Many of us don’t have the luxury of waiting 5-10 years for (as an example) the results of trials testing Alpha Lipoic Acid as a possible neuroprotective agent. I’m more than happy to take a gamble with a low risk/ low cost supplement. Any further advice / suggestions gratefully received.
– I also like a bit of crystal ball gazing ie if you had MS what excites you as an MSologist from the research / trials currently underway / planned? Even if things don’t pan out, it’s nice to hear your views and your odds on success etc.
Many thanks for all your efforts.
SID could be me. Yes to everything! Consider it seconded. I want to hear more about smouldering MS – you’ve convinced us enough that we worry, but don’t know what to do! Protecting brain health – yes! Do what I can. want more. I find the covid posts with new info (i.e. new guidelines, finally a study proving the fact we all already knew that anti CD therapy leads to increased risk for severe disease) useful. I’d like guidelines on how to phase back to normal when we are only partially vaccinated as no one addresses this. -Those will all be useful and welcome covid posts, but I find the constant level of posts repetitive so mix in more on what to do on smoldering ms and what trials we might consider please! .
Thanks, Sid. You are one of our regular readers who have specifically requested for us to do less COVID-19 and more posts on MS research. I will certainly try and cover these topics over the next few weeks.
You’ve recommended it enough times I’ve just downloaded it on Audible. Normally I’d say I’ll listen to it on one of my runs but I’m currently on the bench with yet another injury. Just as well my marathon was postponed again.
I’ve written 3 comments and deleted them because to explain what’s happening with my ms is too long winded. But I do want to say that MD is the person I go to for my covid info, I wouldn’t know who else to turn to for the kind of information and reassurance he provides. Thanks MD.
🙂
Hear hear. Thanks MD you kept me sane during the first covid months and my anti CD20 related panic.
i would be interested on the co-occurrence of other neurological illness alongside ms for example ms and fnd or fibro or benign fascinations syndrome.
The Covid posts have been helpful . At a time when access to our usual MS appointments has been limited it has been really appreciated to be able to read the latest on how the vaccines and the illness itself affect or don’t affect PwMS.
But I do really appreciate learning about the latest developments in MS treatments and knowledge.
I’d also be interested in more articles about lifestyle and MS.
Once again; Patients do not fail treatment. Treatments fail to work as hoped.
Please please please descist from amplify ing the medical infradig. It’s harks back to times gone by where medics were perfect God’s and failures must be the patients.
I would suggest both are correct.
Some patients do fail treatments; they take the treatment and it only works partially or not at all. Like taking a test at school and failing it. The school test didn’t fail them they failed the test.
In others, who may be misdiagnosed and don’t have MS, the treatment may fail them as they don’t have MS. Like somebody who is given a history exam paper by accident instead of the biology exam paper; the exam paper was the problem, not the student.
Yes I am tired of the Covid posts. I was tired of them a long time ago. I used to read the posts every day until it became all about Covid so I stopped viewing and only check back in every now and then to see if they have stopped.
Respectfully to those fed up (but Without exaggeration) This is the only place in the entire world that I have been able to get specific timely information during the past year related to dealing with MS during the pandemic. I used info from this site to make an informed decision about continuing my DMD as well as about timing vaccine with DMD (both with my personal neuro’s approval). I am grateful. With regard to what type of content I am interested in: how to live my best life with MS. For me, this means specific evidence based lifestyle, diet, exercise, and pharmaceutical interventions I can employ. Finally, what helps MS depression? it’s different than regular depression, and as you described with your patient above, compounded by isolation and loss of purpose imposed by The Longest Year. I joke with others that my (MS induced) existential crisis was trumped by a worldwide pandemic. Now As the world adjusts to a “new normal”, what does it mean for us MSers who continue to be immune compromised and may need to voluntarily continue to self isolate? I hear discussions that the States likely will have a long tail of recovery. How can MSers best protect their physical and mental health in the coming year?
For me, I’d like to see a post about converting theory to practice. The cocktail that your prescribed for sid is a great example of taking your theory and enabling someone to apply it in practice. To take another one – HSCT and Alemtuzumab have been shown to be the DMTs of choice in terms of potentially curing MS and at least attacking the route cause of these disease. How can these DMTs be accessed in practice though? The reality is you need to take a trip abroad, accrue more damage on a crab drug to take Alem second line or fail a high efficacy treatment. Is accepting Ocrevus in this scenario counter productive? It excludes you from a trial, keeps mri activity at bay and controls relapses. Good news on some fronts but it means that you lose the keys to top top shelf when it would be of most use early in the disease course. What is the solution here?
Very good question, I wrestle with much the same point about ocrelizumab…
This is the only place to read current information re covid as it relates to those of us with MS. I would like to continue seeing such posts, in addition to those things linked out by SID.
As an aside, for your lady with secondary progressive MS, if she can reach to paying for the MS gym it really is a great resource in in terms of keeping ppl engaged, active with tailored movements and for many it provides a community of support / motivation it you chose to engage with that side of it
Any thoughts on this?
“”year after the start of the coronavirus pandemic, experts have made an intriguing discovery: blood tests on some sufferers of long Covid are coming back positive for ‘reactivated’ Epstein-Barr.””
the infamous Epstein Barr rears it’s head again……
yes, I know it’s from the Mail, but
https://www.dailymail.co.uk/health/article-9358477/Why-struck-Long-Covid-really-suffering-glandular-fever.html
Not sure of the source information this is prof Gs domain
This lady has my sympathy. I hope things improve for her because I know what it was like seeing it happen to my mum.
No, please keep the emails coming.
Knowledge is power!
I’ve learnt so much from all the blog emails that I have received to-date.
I can’t think of one other neurologist and their team that does this, is incredibly passionate about their work and shares information and their thoughts on a regular basis.
Brilliant, keep it up.
However, one small request …
Can you please switch off the blog emails on a Sunday.
It’s good to have one day a week to take a breather from reading about MS.
Thanks.
bernard
I came here partly because of the Covid commentary. People out in social media land repeat ill found information. Besides the web sites of the MS Society and the MS Trust where do you suggest we go?
Going on to what pwMS are doing in lockdown
I dealt with the first lockdown by educating myself through online learning. This covered MS itself, medical research methodology, improving health service practice, how the NHS works, brain health. I do not claim to be an expert, but I found out in my last career that people who knew a little about a lot of things are a good foil to those who know a lot about a little.
To add to the smouldering MS and use it or lose it models. I would like to add my own variation. Living with MS is like walking on a slippery slope. The natural progression is to deteriorate. By doing stuff we stay where we are or maybe creep back a little. Covid has severely curtailed our activities, not even allowing us the frustration of travelling to our medical appointments let alone going to the cinema, theatre, sports event or even shopping. I grabbed whatever I could between lockdowns and have inserted zoom exercise classes for our post Christmas lockdown episode.
It will be difficult for our medical teams to measure our deterioration against what might be expected. What if anything can be done to address this post lockdown when we will be competing against long covid as well as all the other groups.
What can be done beyond DMTs is difficult to prove and so to obtain resources for. The splitting off of the funding for DMTs centrally is essential for it to be continued, but does leave other aspects and those excluded under resourced with the MS nurses having to spend additional time on monitoring their charges who are on DMTs (like me).
The MS Trust has started to sponsor MS champions in the same way as it does MS nurses to emphasise what can be done some for long term MS sufferers who have fallen out of the system.
I think this article is fab at explaining cognitive impacts of COVID – it might not all be MS related
https://www.theatlantic.com/health/archive/2021/03/what-pandemic-doing-our-brains/618221/
Please keep the Covid posts going. It’s the place I come for information about MS and Covid. Particularly interested to find out how effective the vaccines turn out to be for people with auto-immune conditions and if immuno-compromised. I had Pfizer a few weeks back, I’m on natalizumab. My MS seems worse since I had the vaccine …… could be coincidence …… several of my MS friends are saying the same thing.