“At our research day on Saturday one of the attendees asked me if I a wealthy donor gave me a large sum money for MS research what would I spend it on?”
“Would I spend it on another progressive MS trial or on more animal and basic research?”
“No! I would invest it in MS PREVENTION.”
“The incidence of MS is rising, more women will be diagnosed this year than last. Why? It is not that we have no idea what causes MS; we have clues. Low vitamin D levels, smoking and EBV infection increase your risk. All these factors are modifiable If we know how they interact we can prevent MS. Therefore, why are we not doing prevention trials? The problem is the current people working in MS, myself included, don’t necessarily have the skill set, or resources, to run the studies necessary to tackle prevention on the grand scale that is required.”
“So I would use the money to set-up an Institute of Preventative Neurology; I would not only target MS as some of the ideas and methods needed for MS could be used for other neurological conditions. In addition for any new Institute to be successful it will require critical mass. For MS prevention, I would hire an team that consisted of an epidemiologist and a public health expert and provide them with what they need to study MS at a population level, in particular administrative and statistical support. They will also need the tools for launching a public health campaign; these include public relations, advertising and marketing staff. The unit would also need virology, biomarker and genomics groups, not to mention IT and logistics group to run and maintain the websites, databases and public engagement tools that would underpin the studies and interventions envisaged. Embedded in the unit would be social scientists, in particular sociologists. The emerging importance of social science for the hard sciences cannot be over stated. The adoption of any preventative strategy and measuring its impact will need to be done by social scientists; neurologists and immunologists are relatively clueless when it comes to the social impact of their research.”
“Would I spend it on another progressive MS trial or on more animal and basic research?”
“No! I would invest it in MS PREVENTION.”
“The incidence of MS is rising, more women will be diagnosed this year than last. Why? It is not that we have no idea what causes MS; we have clues. Low vitamin D levels, smoking and EBV infection increase your risk. All these factors are modifiable If we know how they interact we can prevent MS. Therefore, why are we not doing prevention trials? The problem is the current people working in MS, myself included, don’t necessarily have the skill set, or resources, to run the studies necessary to tackle prevention on the grand scale that is required.”
“So I would use the money to set-up an Institute of Preventative Neurology; I would not only target MS as some of the ideas and methods needed for MS could be used for other neurological conditions. In addition for any new Institute to be successful it will require critical mass. For MS prevention, I would hire an team that consisted of an epidemiologist and a public health expert and provide them with what they need to study MS at a population level, in particular administrative and statistical support. They will also need the tools for launching a public health campaign; these include public relations, advertising and marketing staff. The unit would also need virology, biomarker and genomics groups, not to mention IT and logistics group to run and maintain the websites, databases and public engagement tools that would underpin the studies and interventions envisaged. Embedded in the unit would be social scientists, in particular sociologists. The emerging importance of social science for the hard sciences cannot be over stated. The adoption of any preventative strategy and measuring its impact will need to be done by social scientists; neurologists and immunologists are relatively clueless when it comes to the social impact of their research.”
“Yes, prevention is the Elephant in the Room. We are neglecting it at our peril! The next generation of MSers are going to look back and ask us why we didn’t start prevention studies sooner. Will they accept our excuses? I wouldn’t!”
“This reminds me of a story about a new Viceroy to India. When he arrived in India he asked his private secretary: ‘Why has nobody planted trees on the estate?’ To this his private secretary responded: ‘By the time they have grown you will be long gone’. The Viceroy responded, ‘Even more reason to plant them today.’“
“I doubt I will forgive myself if I don’t launch an MS Prevention study before I die. May be it is time to stop blogging and to write grants; prevention grants?”
I think prevention trials will be started once MS becomes a really big epidemic; right now it's still a 'niche' disease so most people don't even know what it is. I would think that once you stop progression/find a cure maybe prevention will not be needed like in the case of an EBV-vaccine or some supplementation. Once they become mandatory (as happened with polio) the disease will cease to exist.
That's the problem; it is not niche. The incidence in the UK is quoted as being 6-7/100,000. Most think this is an underestimate and the correct figure is closer to 9/100,000. The UK has a population of 61.9M*, using the conservative figure of 6/100,000 means that over 3,700 people will develop MS per year. If we wait 10 years, that is over 37,000 people with MS. Each person with MS costs the UK $48,882 per year (2007, figures from the MSIF report). Over 10 years these 37,000 MSers will cost the UK £2.48billion in direct and indirect costs. This does not include the 100,000+ MSers that already exist. As we are still in the epidemic phase of MS, i.e the incidence is increasing, these figures may underestimate the problem by a factor of 2. Even if our prevention strategy reduces the new cases by 25% it would have a major economic impact; not to mention the personal impact it will have on those 9000+ people who don't get the disease. IF WE DON'T PLANT THE TREES NOBODY WILL EVER SEE THE GROWN! Too much is at stake to ignore the issue! We need to act now. *(http://www.wolframalpha.com/input/?i=What+is+the+population+of+the+UK%3F).
Prof G,Agree with above post. They've been trying for years to stop people from smoking and can't get much below 20% (worse in young woman).I would hope that as you get to the end of your career (10-15 years time), those newly diagnosed will get treatments which allow them to continue living a full life e.g. treatments which stop them going progressive / needing walking aids etc. Your focus should be on stopping MS NOW for those with the disease i.e. EBV treatments, Alemtuzumab type treatments, treatments which encourage repair. These are within you grasp (and your lifespan). Prevention should be left to the next generation of researchers. You and your colleagues should continue to focus on stopping MS in its tracks and encouraging repair. I you make headway on these two themes (forget Prevention) you will get your rewards in the after-life.
Is it not important to find what is the cause first, how can you know how to prevent something if you do not know the cause ?
I think we have found the cause; EBV! I am having problems convincing people that it is the cause. This is why we have launched the Charcot Project; one way of proving EBV it is the cause of MS is to treat EBV and see what happens.
Maybe if you found that benefactor then you could mobilise the troops… Do they exist?
I am also convinced that EBV (maybe VZV) is the ORIGINAL cause.But: does EBV also cause the relapses? I guess this question is of more importance. And I would like to make one prediction here: getting rid of EBV will NOT stop relapses. It may be beneficial to other ppl with diseases caused by EBV which would be a good thing nonetheless.But I am in no way convinced that getting rid of EBV will stop relapses.
Or ? even e.g. Chlamydia Pneumonia or Lyme disease, I believe there are a stringent antibiotic regimes for these.Are there accurate tests available?If so, is this what you would envisage for Ebstein Barr.Is everyone presenting with the list of ms symptoms not routinely tested already?or for Thyroid Function i.e. T3 & T4 ?
There is a new movie coming out about the life of Dr. Jean-Martin Charcot, the French neurologist that discovered MS (http://www.variety.com/article/VR1118065548/).I think this blog should tell the producers about their Charcot project and see if you and get more funding for trials by associating yourselves with the project.
really that should be very interesting
What's the difference between controlling and treating a disease? It seemed that you hope the retroviral trial will control MS, but you don't seem to say it will be a DMT. If given at a CIS could it stop MS developing. It would probably be unethical to give retrovirals to prevent MS in those EBV+
We need to wait and see what the results are from the trial before making any bold claims.
When is the movie coming out – will it be on general release?
Don't stop blogging – this is a great resource and it would be a real shame to see it go!
i didn't make it to the day on saturday but had a question all ready to go which seems indirectly pertinent to this thread:A wide variety of MS treatments including pharmaceutical interventions appear effective for some but not others, treating vascular issues appears to be effective for some but not others, dietary approaches to disease management appear to be more effective for some but not others, HBOT appears effective for some but not others and you could say the same for LDN.Could we conclude that MS has more than one cause?If this is the case are there any tests that could be used to screen/examine patients early on in the course of their disease to see which treatment is most likely to be most relevant for that particular individual?Might this also provide an opportunity to hold meaningful trials that could recruit patients from a narrower base and more effectively target future treatments?
It is clear that some people are better responders than others. This will depend on what target for treatment.In the sativex trial all people were put on active drug then the 50% that gave a more than 20% response or so were randomised to either carry on with drug or get placebo.Then there are predictors, some features of disease are indicators of prognosis, check out prof Gs posts for today