This Is MS Multiple Sclerosis Knowledge & Support Community

bromley · Post by **bromley** » Thu Oct 05, 2006 4:43 am

Dear all,

Many experts consider MS to have an infectious cause (for those with genetic susceptibility)

Dr Giovannoni is one of my neuros and is interested in the role of EBV. I saw today that he has been given a grant to do further research on this. Once infected with EBV (90% of the population) the virus remains for life in B cells. Rituxan which depletes B cells is currently in trial for MS, so it will be interesting to see what affect depleting B cells has.

Ian

http://www.mssociety.org.uk/go.rm?id=18366:1

Brainteaser · Post by **Brainteaser** » Thu Oct 05, 2006 2:16 pm

Why do they think it could be EBV? My neuro said that MS might result from one of 6000 viruses. Maybe Ian, you could ask Dr G. about this.

Degerlache · Post by **Degerlache** » Fri Oct 06, 2006 1:36 am

Hey,

There are already serious indications about involvement of EBV

as

- a study on nurses with blood samples dated before their start of MS showing very specific reactions agains EBV in persons later having MS,
- In studies persons with MS are 100% infected with EBV, while in general it is only about 95%, but more important,
- among the 5% of population not infected with EBV, MS is not appearing.

bromley · Post by **bromley** » Fri Oct 06, 2006 3:14 am

Degerlache,

Thanks.

Phil,

There's also evidence from studies of kids with MS in both Canada and Turkey. The overwhelming majority diagnosed with MS had been infected with EBV.

The work done by the Boston Cure Project on pathogens also highlighted EBV as a strong contender.

But other pathogens are being examined, so the jury is still out. But the evidence to date suggests that EBV has a role.

Ian

lyndacarol · Post by **lyndacarol** » Fri Oct 06, 2006 3:34 am

Ian, does any researcher know if EBV damages the pancreas? Does it causes the production of lots of mucus (inflammation) in the body, which I think prompts the pancreas into excess insulin mode? You know about my fixation on insulin--I continue to look for a connection in everything to that.

bromley · Post by **bromley** » Fri Oct 06, 2006 3:52 am

Lyndacarol,

I'm not sure.

By coincidence, The Lancet Neurology, Vol 5, Number 10, October 2006 has a discussion / articles on 'Infectious causes of multiple sclerosis' (covering EBV and Cpn). As usual there's always money to be made and they want $30 to access it on the web. If anyone has access to the hard copy it would be good to summarise the conclusions (not Sarah - Cpn bias, or myself - EBV bias).

The Lancet has an article on MS rates for females in Canada which are increasing much higher than for males. My advice to young Canadian women - get out while you can! Ecuador must be on the equator.

Ian

Degerlache · Post by **Degerlache** » Fri Oct 06, 2006 4:43 am

Hello,

If looking for a connection to insulin, there is to remind the pioglitazone (ACTOS) case story, reversing a secondary progressive case of MS and there should currently be a phase II trial on pioglitazone (but didn't hear anything about it for some time).

ACTOS is a medicine (PPARgamma agonist) for diabetics and has to do with insulin resistance (wathever that means).

Degerlache

Brainteaser · Post by **Brainteaser** » Fri Oct 06, 2006 11:11 pm

Ian,

No argument from me that EBV might not be involved in MS. I just thought that while you had the ear of Dr G. you might ask him his views on the involvement of other potential viruses.

It's been a while since I studied statistics but is 95% a statistically significant variation from 100%?

Phil.

bromley · Post by **bromley** » Sat Oct 07, 2006 1:32 am

Phil,

The UK MS Society is also funding research into another virus:

http://www.mssociety.org.uk/go.rm?id=18365:1

I think the data on EBV is that around 90% of people get infected. For people with MS, 99% have been infected with EBV. For the c.10% that have not been infected with EBV, they don't get MS.

Here is an abstract from the Lancet:

Patients with MS are seropositive for EBV, and the titres of virus-specific antibodies are higher in indiduals with the disease than in controls. The difference in the seroprevalance rate is even more prominent in children with the disease (83% vs 42% in age matched healthy individuals).

Of course other viruses may be involved. But some can probably be discounted. Measles, Mumps and Rubella vacinations have been around for some time yet individuals who have had the MMR jab have been diagnosed with MS - so probably shows that these viruses are not the cause.

If EBV is shown to be the trigger or the reason for the progression of the disease, what can be done? EBV vaccines are being worked on - so this would help future generations. For us? Depleting the B cells where EBV resides by drugs such as Rituximab, fiddling with the genes... This has all to be worked out. But identifying the trigger / cause must be the right way forward than just tinkering with the immune system.

Ian

scoobyjude · Post by **scoobyjude** » Sat Oct 07, 2006 9:12 am

Ian, since you are very involved with the EBV as cause research I'm curious to know why you have decided to go with Campath and not a trial of Rituximab since it would seem to help prove the EBV theory. I am not at all scientifically minded and have no research genius Neurologist on my side so admittedly I get a lot of my info from this site. I was very interested in Rituximab's method of action but have recently become a little leery of it strictly based on possible side effects. I thought for sure that you were interested in Rituximab from previous posts but have recently mentioned Campath. Does Campath destroying T cells also have a link with EBV? Just curious, no alterior motives involved. Trying to gain all the knowledge I can. If I'm remembering wrong I apologize.

bromley · Post by **bromley** » Sun Oct 08, 2006 2:24 am

Scooby,

Campath depletes B cells (the cells that harbour EBV) and T cells (the cells that the researchers think do the damage). It's an option for me because I can get on a study and there's no placebo arm. I also followed the stories of some who have taken the option. Campath has been studied for use in MS since the early 1990s. As it is very good at stopping relapses and inflammation - its benefit is in the RR phase. Jury still out if going this route will stop the move to the progressive phase - early results look positive (but you never know with this disease).

Some think Rituximab looks very promising but the Phase II more detailed trial data has still to be publicised. It will also be interesting to see how the trial with PP MS patients goes. I think the Rituximab trials are all taking place in the US (which rules me out).

Of course, treatments like Campath are not for everyone. But Rituximab has also been approved for difficult RA cases (in addition to cancers) and is also being trialled for Lupus. And Rituximab has been used for a long time. I get sick and tired of reading possible side-effects. You even get bad ones if you take aspirin. At the end of the day we are backed in a corner with this disease and the choice appears to be (i) let the disease take its course or (ii) take a treatment (Tysabri, chemo drugs) with possible serious side-effects. Some choice! My simple philosophy is that we were the 1 in 1,000 to get this crap disease. If 'life' also hands you the 1 in 3,000 cases of PML etc etc, then someone really didn't like us!

Ian

scoobyjude · Post by **scoobyjude** » Sun Oct 08, 2006 11:22 am

You're right, side effects can happen with anything you take. Guess it's just scary to think that taking something that's supposed to help you could have such horrible side effects. Right now there really is no easy choice. Kinda sucks. And I happen to be a horrible worry-wort. Hopefully soon there will be something a little less scary.
I didn't realize Campath depleted B cells too. Thanks for the info. I'm still interested in Rituximab but I'll probably wait to see more results. Good luck on your study.

bromley · Post by **bromley** » Sun Oct 08, 2006 1:24 pm

Scooby,

Here's an article from earlier this year about Rituxan (I'm a sucker for news clips like the one with this article).

<shortened url>

Details of the Phase II trial results have yet to be released, but it was interesting that a Genentech executive said that "These initial results exceeded our expectations". In addition to the Phase III PPMS trial, the US NMSS is also funding a small RR trial. Also, the cureMSnow charity is funding research based on Rituximab. Finally, work is on-going at the Monson Labs examing Rituxan as a possible treatment.

So it may all come to nothing, but there seems to be a lot of interest. Fingers crossed that it delivers better efficacy than the CRAB drugs. And two infusions a year.

Ian

scoobyjude · Post by **scoobyjude** » Sun Oct 08, 2006 7:36 pm

Two infusions a year does seem wonderful compared to every other day. Is Campath still a once a year infusion even in the study?

Loobie · Post by **Loobie** » Tue Oct 10, 2006 8:41 am

I offer up this tidbit. It's hard to imagine something that 90% of the population has running around in their bloodstream triggerring this in only a handful of us, but let me get to the point. In the early stages of my diagnosis, my neuro-optho had many tests run to find out what was going on with my eyes. We did sugar, lyme, you know the routine. Anyway, my Epstein-Barr titer came back so high that he wanted to know when in my lifetime did I have mononucleosis. I stated that I had never had it. He told me that I had to because the titer was so high (whatever the hell that means, and it's been a while so I might have the terminology wrong). I asked "could you ever have mono and not know it?". He said absolutely not, it's too "heavy" of a condition for you to have it and not know.

Well I'm here to tell you, I've never had it. But apparently my body has reacted to something with the EBV. So maybe they are onto something. Maybe just us MS'ers have something in our immune response to EBV that also has it eating our myelin.

EBV

EBV

Does EBV damage the pancreas?