As I have MS my daughter has about a 1 in 40 risk of getting MS. I assume that as she now has IM her risk of getting MS is further increased. What can I do to reduce this risk?
+1 here. IM aged 19 and PPMS from around 50 (retrospective estimate).
As you say, there's a big gap in the research between IM, MS and Infectious Diseases. Trouble is that IM and ID are of the episodic mindset, whereas the MS community are looking at a lifetime condition and still seeking the metaphorical source of the Nile.
MS needs its own Bill Gates. An evangelist with bottomless pockets determined to eradicate a particular disease.
I grew up in NZ where I was kept out of the sun after my godmother died from melanoma. I had glandular fever just before I turned 20 and I don't feel like I ever fully recovered. Life got harder from that point on. There were no more all nighters, that's for sure!
Now I live in the UK it's actually easier to get some sun. I don't have to spend ten minutes putting sunscreen on before going outside. I lead a very active life a lot of which involves being outside. I run, I cycle, I go camping, I walk everywhere as I don't have a car here (a necessity in NZ but not in London!). Last year I bought a ground floor flat with a garden and I feel so good when I've been working out there.
In terms of reducing MS risk there is some good advice in the book Overcoming MS - much of it the same as Prof G's. The book adds following the Overcoming MS diet. That works for me but from the evidence available it seems any of the MS diets will do. What they all have in common is a focus on whole foods and reduction or elimination of highly processed foods.
I caught IM aged 17 but didn't develop the typical sore throat until AFTER I had already developed jaundice and had been hospitalised as 'PUO' following three weeks of high fever and no response to antibiotics. I was very poorly but got better eventually. At 22 I had my first MS flare but was chased away by an unsympathetic neurologist. Two years later (1986) following other signs and symptoms over time and a lumbar puncture, I was diagnosed with MS. Sadly the physician I saw decided not to tell me, instead saying it was likely ME and I should go live my life (this was at the same hospital, though a different medic).
I continued to have mildish problems (vertigo, 'back spasms', fatigue etc.) over time but didn't connect these with the possibility of MS since as far as I knew this had been ruled out.
At 27 I caught chicken pox, which turned into pneumonia and I was hospitalised again, in a different hospital and different area of the country. I was immediately put on a drip of Acyclovir and on discharge was given the drug in tablet form. I thought this was normal - if I thought about it at all - and only later found out it wasn't.
At 39 and after years of only mild MS activity I had what I now know to be a major relapse and was finally told - by yet another doctor in yet another area of the country - that I was, indeed, a PwMS and was referred on to the local neurology clinic.
I'm now 61. I take no DMDs but manage the issues of what became SPMS about ten years ago with meds; luckily I do pretty well on that front, I FINALLY have a reasonable relationship with a neurologist who I see annually unless I need help sooner. I can't work, though, and over the years since recovering from IM I've had quite a few health problems on top of the MS.
Pernicious anaemia (vit B12 injections every twelve weeks); migraine; severe IBS; food and drug intolerances. I flag up as stage 3 CKD in blood tests on various medical computer systems, though this seems to be 'normal for me' and has been stable for years. Sometimes some of these have been more debilitating than the MS, or maybe it's the MS making them harder to cope with.
The whole course of my illness has given me proper anxiety bordering on phobia of hospitals and medical things in general (not to mention the DWP, bless them) which REALLY doesn't help. I'm having quite bad memory/cognition problems and have been advised I can go for evaluation for this but the clinic is at the hospital I first encountered. I can't bring myself to go back there even though the original building has been replaced and no doubt the staff has changed.
When I was first diagnosed the link between IM/EBV and MS wasn't discussed much (mind you the fact that I even had the disease wasn't discussed at all!) but it struck me that virtually everyone I met who had MS had also had IM. Personally I feel EBV could cause many more problems to develop in a body than 'just' MS and it really should be taken much more seriously and studied way more than it is, since I can't be the only person whose life has been knocked off course like this, or worse.
I think those of us who had severe ME at a young age and went on to develop seemingly unrelated issues and MS can relate. I have multiple food and drug intolerances, severe IBS, worsening fatigue since the age of 12 that keeps me bedridden and many other seemingly unrelated diseases. After 38 years and every on and off label treatment, the MS is severe. The newest one for me is that every single one of my neuroendocrine hormones is through the roof, but every single scan (CAT with contrast and whole body Gallium PET) say there is no cancer, so my cancer doctor wants to treat it symptomatically. Do I think it is somehow related to EBV? Yes.
Hi StripyJules, no you’re not the only one, though I am older. Your history is very much like mine. IM at 12. Knocked down with it again at 14. It seemed as though health went downhill thereafter and became worse after a c-section delivery of second child. I’m taking valcyclovir prophylactically and like you also, no DMDs now, but treating it symptomatically. As well as EBV and IM, I absolutely believe in Prof G’s smouldering MS. I am spms and neid, and I just had the worst of flares this last week I attribute to lack of sleep and high stress (a very sick dog and losing two beloved people within weeks of each other). Just when I think “this isn’t so bad!” well, I find it is. Could not walk, speak well, double vision, tremor. Now, a nasty UTI. I couldn’t agree more with you about hospital and medical phobia. 🌷
I like the way you answered the question and added much more value. I also like your suggestion of printing the article and taking it to the daughter's GP.
Research grows knowledge and knowledge is power. I'm in Canada - is there any way I can help you? I don't have any political clout, but I'm happy to help in any way I can.
When I read this I was surprised to see that your GP stopped the antibiotics when they found EBV. This is because EBV tonsillitis always seems to respond to antibiotic treatment (as long as it is not Ampilillin/amoxicillin). Consequently, I always thought that EBV tonsillitis was related to to co-infection with strep and EBV. I was wrong. “EBV-GAS coinfection to be 18 and 29% (Henke et al., 1973; Rush and Simon, 2003)”, so presumably they got a negative throat swab before stopping the antibiotics. I would be interested to know how they diagnosed Acute EBV infection. If it was just a positive EBV IgG, it could be from antenatal vertical transmission and completely irrelevant to her presentation.
Prof G many thanks for your post, and a question about whether the same vit D advice applies to pwMS, not just those at risk?
I saw a dermatologist recently to get a pre-cancerous lesion dealt with post-AHSCT. She was adamant I should continue using sunblock even when my immune system has fully recovered and believed supplements would be as good; she said she has many patients on anti-CD20 drugs with ongoing problems. I did a very quick search and there seems conflicting information on supplements v sunlight so I’m unsure what to do in the future.
Do you think we should be going without sunblock and just monitoring our skin closely or is it dependent on the treatment we are on and degree of immunosuppression?
Yes, I recommend the same dose of vD supplementation regardless of whether you have MS or not. For people without MS it is to prevent MS and for pwMS it is for bone health. The evidence that vD supplements are disease-modifying once you have MS is very weak.
The issue about vD vs. sun exposure requires a trial. Clearly not exposing yourself to sun to prevent skin cancer may come at a cost.
We don't actually treat-2-target in the NHS. Too expensive and difficult to get regular vD levels done.But in an ideal world you would like levels to be between 100 and 250 nmol/L or 40-100ng/mL.
Regarding EBV and antivirals. Soon in Poland there will be the first MS clinic in Zabrze. I think it would be good to contact the clinic in order to organise some clinical trials of antivirals (maybe it is cheaper and easier to do it in Poland). Also I am wondering if antivirals can work in PP MS... there are not so many drugs for this form of ms. I believe we should test this small molecule which can block EBNA 1 in ms (it is tested in cancer at Stanford University). Maybe produce a drug which will be an inhibitor of EBV but it will be able to cross BB barrier better than Ocrevus... just wondering if Ata 188 moves to the third phase... and what about vaccines (PAS 002 and mrna vaccines) Will they work in all forms of ms?
Prof G thank you very much for your reply. I am just wondering- if ms is one disease what about doing one high effective drug which targets EBV but is able to cross BB barrier. Such drug should work in all forms of ms. So instead of using DMT produce one drug able to penatrate the brain? Or maybe focus on car t cell therapy or vaccine? They should also work in all forms of ms. Like IKEA claims - the easiest solutions are the best one.
When reading this, I suddenly remembered that I had ‘pharyngitis’ when I was teaching in London- aged about 26/27…ten years later, initial ms symptoms and diagnosed with ppms at 40 (HSCT aged 41) I also have two girls so will follow this with interest…
I have advanced MS of 38 years. There is also a history of several other auto-immune illnesses in my family. There are 2 or 3 clinical trials for EBV vaccines that my very healthy son is interested in participating, to potentially prevent MS and other auto-immune disease, but his concern is an increased risk of developing MS due to molecular mimicry from some antigenic component of the vaccine. Is this concern valid?
I will need to do a separate MS-Selfie on molecular mimicry, but I don't think it is an issue. Atara Bio's trial of EBV-specific cytotoxic T-cells did not show an increase in MS disease activity and it included EBNA-1, which is the antigen fingered to most in relation to potential molecular mimicry.
This is a great case study and one I've often wondered about since reading your EBV hypothesis. Is there anything we can currently do to limit the effects of EBV in children given we can't yet vaccinate....
If we might limit the longer term effects of EBV by treating IM, and Famciclovir can be bought without a prescription in the UK - is it a reckless to just order this ourselves for symptomatic teens?
Sorry, I don't want to suggest people just self administer meds, but it does seem tempting - what are the risks?
An interesting case study. I am a father of 2 daughters with MS and will certainly take on board the advice regarding vitamin D. I do encourage them to get outside also but dont really want to be thinking of that within a MS context.....it already blights to many thoughts / aspects of life. This case threw up a couple of questions for me that have always bugged me a little
1. 2 years before my first episode, i was experiencing a strange sensation in my throat. Like it was swelled or the passage was tighter somehow. I went to ENT and they said i had an oversized uvlea and cut half of it away. Seemed a bit severe and i wonder what role this piece of anatomy actually performed. Was this the first presentation of MS or was the removal a triggering event? I can never remember having serious IM
2. On my second presentation which gave me my diagnosis, i also developed psorasis (hands and knees)....i had really had MS for at least 5 years at that point although classified as CIS. So why did this coincide with the second episode?
I think coinfection simply means shedding at the time of a strep infection. Finding EBV in your saliva doesn't mean you have IM. IM is the clinical syndrome with being anti-VCA and/or anti-EA IgM positive and Anti-VCA and anti-EBNA1 IgG negative. We have stopped doing monospot.
I have been thinking about this post a lot, raising 3 young children in 1 low UV environment.
Then this came out: "The ARISE study using dimethyl fumarate demonstrating a risk reduction of over 90% of a first clinical event compared with placebo"
Does Prof G see any benefit in proactive regular MRI scanning of at-risk children above a certain age to spot the first pre-symptomatic lesions and start medicating immediately?
Just a theoretical question at this stage with no practical applications.
No I would not recommend MRI monitoring. In a Sardinian family study 10% of sibling of pwMS develop lesions compatible with demyelination, but only 1 in 4 go onto to develop MS. I suspect the 3 out of 4 who have the 'MS endophenotype' on MRI probably clear the virus or cause of MS spontaneously and never get MS. It would not be feasible to monitor children or siblings of pwMS using MRI. For the latte will need a simpler biomarker that can be done on a population level.
Hello Doctor- So I was hospitalized three times in my teens for strep throat. This was in the 70’s and the doc was very old school. Doubt if they did any EBV testing, I was diagnosed visually.. Apparently, I did respond to antibiotics, so it must have been bacterial? Severe sore throat (hard to swallow), white spots, swollen glands, high fever. Would clear in 5 days and I’d wait 5 days to be discharged. Then in my early 20’s, spinal meningitis (bacterial I think as I responded to antibiotics again). That was pretty bad, but recovered. MS ten years later about 30. I’ve brought these issues up in the past but was always told there was no relation. Is it possible I had EBV not strep throat? I think I was pretty active and happy otherwise. I’ll have to ask my female cousin who has MS if she ever had any strep throat?
Unrelated to that- Multiple Sclerosis News Today reports “ModeX teams up with Merck to develop MDX-2201 vaccine for EBV”. Anything to it that MS people might be interested in?
+1 here. IM aged 19 and PPMS from around 50 (retrospective estimate).
As you say, there's a big gap in the research between IM, MS and Infectious Diseases. Trouble is that IM and ID are of the episodic mindset, whereas the MS community are looking at a lifetime condition and still seeking the metaphorical source of the Nile.
MS needs its own Bill Gates. An evangelist with bottomless pockets determined to eradicate a particular disease.
I grew up in NZ where I was kept out of the sun after my godmother died from melanoma. I had glandular fever just before I turned 20 and I don't feel like I ever fully recovered. Life got harder from that point on. There were no more all nighters, that's for sure!
Now I live in the UK it's actually easier to get some sun. I don't have to spend ten minutes putting sunscreen on before going outside. I lead a very active life a lot of which involves being outside. I run, I cycle, I go camping, I walk everywhere as I don't have a car here (a necessity in NZ but not in London!). Last year I bought a ground floor flat with a garden and I feel so good when I've been working out there.
In terms of reducing MS risk there is some good advice in the book Overcoming MS - much of it the same as Prof G's. The book adds following the Overcoming MS diet. That works for me but from the evidence available it seems any of the MS diets will do. What they all have in common is a focus on whole foods and reduction or elimination of highly processed foods.
I caught IM aged 17 but didn't develop the typical sore throat until AFTER I had already developed jaundice and had been hospitalised as 'PUO' following three weeks of high fever and no response to antibiotics. I was very poorly but got better eventually. At 22 I had my first MS flare but was chased away by an unsympathetic neurologist. Two years later (1986) following other signs and symptoms over time and a lumbar puncture, I was diagnosed with MS. Sadly the physician I saw decided not to tell me, instead saying it was likely ME and I should go live my life (this was at the same hospital, though a different medic).
I continued to have mildish problems (vertigo, 'back spasms', fatigue etc.) over time but didn't connect these with the possibility of MS since as far as I knew this had been ruled out.
At 27 I caught chicken pox, which turned into pneumonia and I was hospitalised again, in a different hospital and different area of the country. I was immediately put on a drip of Acyclovir and on discharge was given the drug in tablet form. I thought this was normal - if I thought about it at all - and only later found out it wasn't.
At 39 and after years of only mild MS activity I had what I now know to be a major relapse and was finally told - by yet another doctor in yet another area of the country - that I was, indeed, a PwMS and was referred on to the local neurology clinic.
I'm now 61. I take no DMDs but manage the issues of what became SPMS about ten years ago with meds; luckily I do pretty well on that front, I FINALLY have a reasonable relationship with a neurologist who I see annually unless I need help sooner. I can't work, though, and over the years since recovering from IM I've had quite a few health problems on top of the MS.
Pernicious anaemia (vit B12 injections every twelve weeks); migraine; severe IBS; food and drug intolerances. I flag up as stage 3 CKD in blood tests on various medical computer systems, though this seems to be 'normal for me' and has been stable for years. Sometimes some of these have been more debilitating than the MS, or maybe it's the MS making them harder to cope with.
The whole course of my illness has given me proper anxiety bordering on phobia of hospitals and medical things in general (not to mention the DWP, bless them) which REALLY doesn't help. I'm having quite bad memory/cognition problems and have been advised I can go for evaluation for this but the clinic is at the hospital I first encountered. I can't bring myself to go back there even though the original building has been replaced and no doubt the staff has changed.
When I was first diagnosed the link between IM/EBV and MS wasn't discussed much (mind you the fact that I even had the disease wasn't discussed at all!) but it struck me that virtually everyone I met who had MS had also had IM. Personally I feel EBV could cause many more problems to develop in a body than 'just' MS and it really should be taken much more seriously and studied way more than it is, since I can't be the only person whose life has been knocked off course like this, or worse.
I think those of us who had severe ME at a young age and went on to develop seemingly unrelated issues and MS can relate. I have multiple food and drug intolerances, severe IBS, worsening fatigue since the age of 12 that keeps me bedridden and many other seemingly unrelated diseases. After 38 years and every on and off label treatment, the MS is severe. The newest one for me is that every single one of my neuroendocrine hormones is through the roof, but every single scan (CAT with contrast and whole body Gallium PET) say there is no cancer, so my cancer doctor wants to treat it symptomatically. Do I think it is somehow related to EBV? Yes.
Hi StripyJules, no you’re not the only one, though I am older. Your history is very much like mine. IM at 12. Knocked down with it again at 14. It seemed as though health went downhill thereafter and became worse after a c-section delivery of second child. I’m taking valcyclovir prophylactically and like you also, no DMDs now, but treating it symptomatically. As well as EBV and IM, I absolutely believe in Prof G’s smouldering MS. I am spms and neid, and I just had the worst of flares this last week I attribute to lack of sleep and high stress (a very sick dog and losing two beloved people within weeks of each other). Just when I think “this isn’t so bad!” well, I find it is. Could not walk, speak well, double vision, tremor. Now, a nasty UTI. I couldn’t agree more with you about hospital and medical phobia. 🌷
BRAVO - - -BRAVO - - -BRAVO
I like the way you answered the question and added much more value. I also like your suggestion of printing the article and taking it to the daughter's GP.
Research grows knowledge and knowledge is power. I'm in Canada - is there any way I can help you? I don't have any political clout, but I'm happy to help in any way I can.
When I read this I was surprised to see that your GP stopped the antibiotics when they found EBV. This is because EBV tonsillitis always seems to respond to antibiotic treatment (as long as it is not Ampilillin/amoxicillin). Consequently, I always thought that EBV tonsillitis was related to to co-infection with strep and EBV. I was wrong. “EBV-GAS coinfection to be 18 and 29% (Henke et al., 1973; Rush and Simon, 2003)”, so presumably they got a negative throat swab before stopping the antibiotics. I would be interested to know how they diagnosed Acute EBV infection. If it was just a positive EBV IgG, it could be from antenatal vertical transmission and completely irrelevant to her presentation.
Prof G many thanks for your post, and a question about whether the same vit D advice applies to pwMS, not just those at risk?
I saw a dermatologist recently to get a pre-cancerous lesion dealt with post-AHSCT. She was adamant I should continue using sunblock even when my immune system has fully recovered and believed supplements would be as good; she said she has many patients on anti-CD20 drugs with ongoing problems. I did a very quick search and there seems conflicting information on supplements v sunlight so I’m unsure what to do in the future.
Do you think we should be going without sunblock and just monitoring our skin closely or is it dependent on the treatment we are on and degree of immunosuppression?
Yes, I recommend the same dose of vD supplementation regardless of whether you have MS or not. For people without MS it is to prevent MS and for pwMS it is for bone health. The evidence that vD supplements are disease-modifying once you have MS is very weak.
The issue about vD vs. sun exposure requires a trial. Clearly not exposing yourself to sun to prevent skin cancer may come at a cost.
What serum Vit D level do you aim for?
We don't actually treat-2-target in the NHS. Too expensive and difficult to get regular vD levels done.But in an ideal world you would like levels to be between 100 and 250 nmol/L or 40-100ng/mL.
Thanks for your response, really appreciate it.
Regarding EBV and antivirals. Soon in Poland there will be the first MS clinic in Zabrze. I think it would be good to contact the clinic in order to organise some clinical trials of antivirals (maybe it is cheaper and easier to do it in Poland). Also I am wondering if antivirals can work in PP MS... there are not so many drugs for this form of ms. I believe we should test this small molecule which can block EBNA 1 in ms (it is tested in cancer at Stanford University). Maybe produce a drug which will be an inhibitor of EBV but it will be able to cross BB barrier better than Ocrevus... just wondering if Ata 188 moves to the third phase... and what about vaccines (PAS 002 and mrna vaccines) Will they work in all forms of ms?
Yes, if the EBV hypothesis is correct antivirals will work in all forms of MS. Don't forget #MS_is_1_not_2_or_3_diseases
Prof G thank you very much for your reply. I am just wondering- if ms is one disease what about doing one high effective drug which targets EBV but is able to cross BB barrier. Such drug should work in all forms of ms. So instead of using DMT produce one drug able to penatrate the brain? Or maybe focus on car t cell therapy or vaccine? They should also work in all forms of ms. Like IKEA claims - the easiest solutions are the best one.
When reading this, I suddenly remembered that I had ‘pharyngitis’ when I was teaching in London- aged about 26/27…ten years later, initial ms symptoms and diagnosed with ppms at 40 (HSCT aged 41) I also have two girls so will follow this with interest…
I have advanced MS of 38 years. There is also a history of several other auto-immune illnesses in my family. There are 2 or 3 clinical trials for EBV vaccines that my very healthy son is interested in participating, to potentially prevent MS and other auto-immune disease, but his concern is an increased risk of developing MS due to molecular mimicry from some antigenic component of the vaccine. Is this concern valid?
I will need to do a separate MS-Selfie on molecular mimicry, but I don't think it is an issue. Atara Bio's trial of EBV-specific cytotoxic T-cells did not show an increase in MS disease activity and it included EBNA-1, which is the antigen fingered to most in relation to potential molecular mimicry.
It would be great to get to know more about molecular mimicry. Thank you prof G for everything. We really appreciate what you do for MS community.
This is a great case study and one I've often wondered about since reading your EBV hypothesis. Is there anything we can currently do to limit the effects of EBV in children given we can't yet vaccinate....
If we might limit the longer term effects of EBV by treating IM, and Famciclovir can be bought without a prescription in the UK - is it a reckless to just order this ourselves for symptomatic teens?
Sorry, I don't want to suggest people just self administer meds, but it does seem tempting - what are the risks?
An interesting case study. I am a father of 2 daughters with MS and will certainly take on board the advice regarding vitamin D. I do encourage them to get outside also but dont really want to be thinking of that within a MS context.....it already blights to many thoughts / aspects of life. This case threw up a couple of questions for me that have always bugged me a little
1. 2 years before my first episode, i was experiencing a strange sensation in my throat. Like it was swelled or the passage was tighter somehow. I went to ENT and they said i had an oversized uvlea and cut half of it away. Seemed a bit severe and i wonder what role this piece of anatomy actually performed. Was this the first presentation of MS or was the removal a triggering event? I can never remember having serious IM
2. On my second presentation which gave me my diagnosis, i also developed psorasis (hands and knees)....i had really had MS for at least 5 years at that point although classified as CIS. So why did this coincide with the second episode?
Thanks
I think coinfection simply means shedding at the time of a strep infection. Finding EBV in your saliva doesn't mean you have IM. IM is the clinical syndrome with being anti-VCA and/or anti-EA IgM positive and Anti-VCA and anti-EBNA1 IgG negative. We have stopped doing monospot.
I have been thinking about this post a lot, raising 3 young children in 1 low UV environment.
Then this came out: "The ARISE study using dimethyl fumarate demonstrating a risk reduction of over 90% of a first clinical event compared with placebo"
https://multiple-sclerosis-research.org/2023/08/ok-you-know-about-this-but-the-ms-processes-occur-long-before-ms-shows-itself/
Does Prof G see any benefit in proactive regular MRI scanning of at-risk children above a certain age to spot the first pre-symptomatic lesions and start medicating immediately?
Just a theoretical question at this stage with no practical applications.
No I would not recommend MRI monitoring. In a Sardinian family study 10% of sibling of pwMS develop lesions compatible with demyelination, but only 1 in 4 go onto to develop MS. I suspect the 3 out of 4 who have the 'MS endophenotype' on MRI probably clear the virus or cause of MS spontaneously and never get MS. It would not be feasible to monitor children or siblings of pwMS using MRI. For the latte will need a simpler biomarker that can be done on a population level.
Hello Doctor- So I was hospitalized three times in my teens for strep throat. This was in the 70’s and the doc was very old school. Doubt if they did any EBV testing, I was diagnosed visually.. Apparently, I did respond to antibiotics, so it must have been bacterial? Severe sore throat (hard to swallow), white spots, swollen glands, high fever. Would clear in 5 days and I’d wait 5 days to be discharged. Then in my early 20’s, spinal meningitis (bacterial I think as I responded to antibiotics again). That was pretty bad, but recovered. MS ten years later about 30. I’ve brought these issues up in the past but was always told there was no relation. Is it possible I had EBV not strep throat? I think I was pretty active and happy otherwise. I’ll have to ask my female cousin who has MS if she ever had any strep throat?
Unrelated to that- Multiple Sclerosis News Today reports “ModeX teams up with Merck to develop MDX-2201 vaccine for EBV”. Anything to it that MS people might be interested in?