Back to the drawing board?

First you claimed EBV must be present for MS to arise. Now you’re admitting there’s no irrefutable proof, and that it might be unrelated.

“Good quality evidence shows there might be a link” would be perfectly fair comment. But please take care to distinguish between that, and presenting something as fact.

1 Like

I thought that a whole bunch of things were considered to be required in order to get an autoimmune disease; for eg. if you have the genetic propensity, plus are exposed to a virus (possibly EBV or maybe another), plus are in the right (could be considered to be wrong) environment, plus maybe lack certain nutrients (vit D?), plus x,y and z then you could get a specific AI disease at a certain age. Which could be MS or lupus, or RA or AI liver disease, or one of a whole bunch of other auto immune disorders. But no one is sure which factors absolutely have to be present for each specific disorder. Personally I reckon I drew the short straw with regard to genetics, environment, exposure to viruses, gender, etc, etc. I’ve had Graves Disease, MS and it’s been suggested my two bouts of hepatitis have an AI relationship.

I’ve done a bit of reading about autoimmune disorders and so far haven’t been convinced that any one single factor on its own has to be present in order to get MS. But then, my brain is the type that has to be forced to really concentrate on anything too scientific, so what do I know??

Sue

Hi,

It has to be down to genetics. If you don’t have those mutated genes then it’s not going to happen.

Adrian

Sue,

I completely agree that it’s likely to be multi-factorial, and the factors may even be different for different people.

I do think the biggest single risk is genetic propensity, but after that, there could be a number of environmental factors that either mitigate or increase a person’s risk. I think it’s unlikely a single cause will ever be identified, but they will know that certain things contribute to a person’s risk profile.

Tina

x

1 Like

The reason it’s proven not to be entirely genetic is the studies on identical twins. If it was solely down to genetics then both of a pair of identical twins would get MS if one did and that’s not the case.

This link is a page from the MS Trust on the genetic link Risk of developing MS | MS Trust

But as the data shows, there is certainly a genetic link.

Sue

Perhaps, Patrick, you should read Murray’s history of MS and see how many viruses have been considered as a possible cause. There are too many for me to type out (look at P242) , but everything from measles to herpes simplex.

You might also try the link you gave - as posted. It does not work. The two links are being treated as one.
Separating the two separate links results in the Bart’s one returning a “page not found error”, while the Australian one (comprehensive as it looks) contains a couple of interesting points.

  • the Conclusions states, in total:
    “Given the rapidly accumulating evidence for a role of EBV in the pathogenesis of MS, there is ground for optimism that it might be possible to prevent and cure MS by effectively controlling EBV infection. Strategies to control EBV infection include vaccination against EBV, antiviral drugs and adoptive immunotherapy with EBV-specific cytotoxic CD8+ T cells.”
    and the next section Conflicts of Interest states:
    _ “SRB holds a patent on the EBV epitopes included in the AdE1-LMPpoly construct.”
    SRB is, you will note, the second author.

Tina has already made the point that about 90% of adults have the virus, and it is estimated that 50% of all children over age 5 in the US have it. This being the case, we really would expect a much higher prevalence of MS if EBV is the cause.

Geoff

2 Likes

Is there a doctor some where who could check the blood of a small number of pwms to see if they all have Lyme’s antibodies or EBVirus antibodies

Could it be that most people’s myelin breaks down and re-generates automatically but in pwms this process doesn’t function properly.

Now this is a fascinating thread. I have no idea so shall just relate my family’s experience and make of it what you will.

My maternal grandmother had ms, this was back in the late 1950’s early 1960’s so not much information available. She died aged 47 so I presume hers was progressive and she suffered secondary problems.

I was diagnosed in June as a bolt from the blue.

My niece (same maternal great grandmother) has recently been diagnosed with EDS.

I had an interesting chat with my Mum the other day when she said ‘you’re just like my Mum, she got everything properly too’

This got me thinking. I have, throughout my life always managed to.get a normal illness and turn it into a drama. It started with german measles as a 10 month old baby which according to my Mum very nearly finished me off. In my early to mid teens chicken pox and measles were pretty major. Then came the doozy, when I was 19, Glandular fever. Took me 6 months to get over it. But when I say get over it, I never really did. Then got it again about 3 years later. GP said, no way you can’t get it twice, it’s something else, but guess what, I did the impossible and got a second positive blood test for it ! Doc had never encountered this before. I like to be different :slight_smile:

since then every time I have had any illness - coughs, colds whatever it has always left me totally knocked out. A sore throat would end in laryngitis and sometimes bronchitis.

My niece is showing signs of being exactly the same.

Three generations with the same propensity for average illnesses being done ‘properly’

I don’t believe this can be a coincidence and with hindsight I’m sure this has been with me all my life.It has just taken a spinal lesion to have a properly disabling effect on me.

There just has to be a genetic predisposition here.

Pretty sure it’s already been done - anything THAT obvious, including hundreds of candidate infections, has already been investigated.

I can’t point to the proof, but why don’t you investigate, and tell us, instead of expecting other people to do your homework for you? Any and all research findings will be out there on Google somewhere, so if you have a specific interest in Lyme disease as the culprit, why don’t you spend a bit of time looking into it, and see what’s already out there? I’m sure there will be something, and also 99.99% certain the upshot will be that no causal link was identified.

But don’t take my word for it - look into it. If the theory’s already been tested and discounted, we don’t need a doctor somewhere to revisit it.

Tina

Clearly Janet you had the EBV (twice!).

But I’m not convinced by the argument that because you’ve had complications with lots of infections you were bound to get MS. I’ve never had the majority of the illnesses you’ve had, the exception being chicken pox. And then I didn’t get it badly. I’ve only ever had average cold viruses and not even had those badly. You could even argue that the reverse argument might hold up, that those people with the strongest immune systems, ie. the people who don’t get diseases and throw off viruses easily, would be more likely to have their immune systems go bananas (medical term!) and attack their myelin etc.

MS still has a genetic component, so the fact that your grandmother had MS (as did mine, probably - it was never tested let alone diagnosed but seems very likely), almost certainly increased the likelihood that you and I have MS and your niece has EDS (never heard of it but I presume another AI disease/disorder).

Again, the proviso that I basically know nothing about anything.

Sue

You made me laugh Sue :slight_smile:

a very valid point to take the opposite point of view. I guess we all apply our own experiences ahead of other peoples when it comes to the ‘why me’ question.

I tend not to dwell on this because it makes b****r all difference. Think it’s an interesting debate though. Wish I understood the difference between genetic predisposition and heredity. Though I presume it doesn’t matter as all the research says it doesn’t have a significant impact. I think it might be wrong but then that’s just my , very unscientific, opinion :slight_smile:

[quote=Anitra]

Pretty sure it’s already been done - anything THAT obvious, including hundreds of candidate infections, has already been investigated.

I can’t point to the proof, but why don’t you investigate, and tell us, instead of expecting other people to do your homework for you? Any and all research findings will be out there on Google somewhere, so if you have a specific interest in Lyme disease as the culprit, why don’t you spend a bit of time looking into it, and see what’s already out there? I’m sure there will be something, and also 99.99% certain the upshot will be that no causal link was identified.

But don’t take my word for it - look into it. If the theory’s already been tested and discounted, we don’t need a doctor somewhere to revisit it.

Tina

you have pm

Agree that general propensity to illness, or even to getting common illnesses more seriously than others, is not correlated with predisposition to MS.

I had no major or serious illnesses as a child, and not even all of the common ones most kids get.

I did have Scarlatina, which is a mild form of Scarlet Fever, which is quite an unusual one, and I remember feeling pretty ill with that, and being delusional. Oddly, I could somehow tell I was delusional, but not stop it - nonsense that at some level I knew wasn’t real was coming out of my mouth. As soon as I began to get better, one of the first things I asked was: “Have I been saying some strange things?” (Yes! LoL)

Although I do remember this as being pretty yucky, I was at no point considered to be in any danger, and wasn’t admitted to hospital.

I wouldn’t say I was a very healthy child overall, as I did have an almost constant stream of colds, which in turn made it difficult for me to eat, as I not only couldn’t breath with my mouth full, but couldn’t taste what I was eating, so everything seemed bland and horrible, and I couldn’t bring myself to finish it. This led to me being very small and underweight for my age. BUT, as depressing and debilitating as the constant colds were, I never got anything more serious, except the one-off Scarlatina.

I don’t really feel childhood propensity to a lot of colds had anything to do with my subsequent development of MS. And as a family, I don’t think we were ever particularly sickly. I can barely remember my parents or grandparents ever being ill with anything - not 'til late in life, when my father got cancer - twice - the second time terminally - but this was caused by occupational asbestos exposure. I think my grandmother did have some sort of immune condition - probably rheumatology spectrum - because she had been up to the hospital for wax bath treatments to her hands, I think. This was quite young - not in old age. So we conclude her hands were painful - she must have had some kind of rheumatism or arthritis - that’s why this therapy was usually given.

She also had open sores on her legs for years and years - they were always bandaged up. I’m not sure she ever got a diagnosis - or maybe she didn’t even seek one. But obviously, open sores for no reason aren’t normal, and this too could be linked with rheumatology.

She had a sister (my great aunt) with MS and another with Parkinson’s. Important genes implicated in MS AND Parkinson’s are both on the same chromosome, so although they’re two different illnesses, I suspect there was more to this than mere bad luck, and there was a family problem with a certain aspect of the immune system.

I never knew until after my diagnosis that anyone else in the family had ever had MS. If I’d known, I’d have been much more suspicious immediately, even though it’s quite a distant relative.

Tina

Strangely, a friend was just telling me about epigenetics (honest I don’t often have conversations like this). She was interested because she reckoned they’ve managed to ‘prove’ a gay gene due to epigenetics. the Wikipedia entry on epigenetics starts out:

Epigenetics is the study, in the field of genetics, of cellular and physiological phenotypic trait variations that are caused by external or environmental factors that switch genes on and off and affect how cells read genes instead of being caused by changes in the DNA sequence.

The full entry is at Epigenetics - Wikipedia

Or another website is Epigenetics: Fundamentals, History, and Examples | What is Epigenetics?

​It looks quite interesting given this whole conversation. It could explain why genetics isn’t the whole answer. And how the various factors that we’ve been debating switch on or off certain genes that have caused MS in us (and our grandparents etc).

Now I’ve given up thinking anything even vaguely sciencey for the day/week/year.

Sue

It is ever so interesting, this epigenetics business. My concern is that it will be used as yet another stick to beat mothers with: no-one can blame the parent for being the unwitting carrier of a dodgy gene or two that happens to be passed through to the unlucky child. But if they can argue (and ‘they’ are starting to do this) that the gene’s (and other genes’) mode of expression can be influenced by (say) conditions in the womb - is expectant mum too fat, is she trace-mineral-deficient on account of poor eating habits, is she thinking enough nice thoughts all the time or is the foetus sloshing around in maternal stress hormones…? Start thinking in those terms and you are within shouting distance of blaming mothers for absolutely everything that ever goes wrong for the child in later life - obesity, mood disorders, hypertension, diabetes etc etc. And MS, most likely.

I deplore the idea of suppressing good science on account of anxiety about how people will receive it, but I really do worry a bit about epigenetics and its implications. :frowning: Ah well. It is as it is, I suppose, and every bit of knowledge takes us further forward, however potentially troubling its implications.

Alison

Than you, I got it OK. Not ignoring you - I will reply in due course.

Tina

And, having followed this thread with interest, I am going to return to one of my pet ideas.

No, not really, it was someone else’s idea to start with.
The “three component” theory was very popular in psychology in the mid/late 1980s.
It was used as an explanation for the start of several mental disorders.
The idea is that there are three components, all of which have to come together for a disorder to develop.
There are some physical conditions which can have this applied to, as well.
The components are Genetic, Environmental, and Situational.

In other words, first you need a genetic predisposition for [whatever it is].
Then you have to be in the right (or wrong) sort of environment.
Then, the right (or wrong) situational factor acts as a trigger.

So, this does sort of fit with the epigenetics approach.
I have applied it to why both my father and son developed lung cancer, and I have not. And, no, I am not going to bore you with the details here.

Geoff

1 Like