“Today is day 14 of our Crowdfunding initiative to establish the rate of EBV viral shedding in a population of pwMS. We are fortunate that frequent saliva samples were collected as part of an exercise study in Sheffield. This means that we can find out what we need to know regarding EBV viral shedding in pwMS without having to spend additional time, effort and money to set-up the collection part of this study. In short we are leap-frogging ahead by using an existing biobank of samples. We already have ethics approval and are ready to go. The rules of Crowdacure are that we can’t start our study until we have reached our target and if we don’t reach our target within the allocated collection time the money will be returned to the donors. Crowdfunding is all or nothing so please help us get to our target; even a £1 donation from enough of you will make a difference.”
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Coarelli et al. Characterization of Epstein–Barr virus genotypes in multiple sclerosis through next generation sequencing approaches. L Neuroimmunol 2014;08:209
Notwithstanding the highly converging evidence, the identification of the mechanisms responsible for the multiple sclerosis (MS)–Epstein–Barr virus (EBV) association remains difficult to clarify. The possibility that only a particular viral genotype associates with the disease is plausible and has been investigated by other groups, with conflicting results. We sequenced the most polymorphic region of the Epstein–Barr nuclear antigen 2 (EBNA2) in blood samples of MS patients and healthy donors (HD) and found an association between EBNA2 genetic variants and MS and a higher than expected breadth of new variants.
Do you count Giftaid? Have not seen a tax form to sign yet?
Yes, we will setting-up gift aid, but not with this campaign. To do that we need to start our own charity. We are planning to do this for the next campaign.
Pof g. Let's get this straight. We donate for you to do a power study to then try to get a trial funded elsewhere? If you don't get this funded our money is wasted?
RE: "We donate for you to do a power study to then try to get a trial funded elsewhere?"I don't like the term 'you'. The Charcot Project is a crowd project and therefore we should refer to it as us.Re: "If you don't get this funded our money is wasted?"This is an important issue. Science is incremental it builds on itself. Without foundations and a base you can't build a pyramid. We think the theoretical foundations re EBV being as being a possible cause of MS is very sound. What we need now are the blocks of the base of the pyramid to convince us that what we are doing in relation to targeting EBV is based on sound science. Without hard data we would simply be guessing. This is why science takes time; it is incremental. I can't promise anything, but without a solid base we can't build. What we need is data on our primary outcome to find the correct dose of an anti-EBV drug. Once we are confident of this only then can we do a clinical trial. There are no short cuts. The good thing about crowdfunding is that it is voluntary; if you don't agree with the proposed study you simply vote with your feet and abstain. However, if you do agree and donate who knows where it will end up. Imagine; imagination in a wonderful thing!
I agree with you pof g, and have supported. But how will you find optimal dose? You are not testing in this study? Also will all of us be authors on the paper?
Re: "But how will you find optimal dose?"Once we are able to power the study we will be doing a study to select the dose.
Re: " Also will all of us be authors on the paper?"The logistics of this will be difficult. What we will do is post the paper for comment and ask for comments. Those who contribute will be entered into a register and will become the Crowdacure MS consortium. We will then publish the paper on behalf of the consortium with all the names registered in a supplement. This type of arrangement happens with large trials already.
Dear Anonymous (Sunday, January 17, 2016 5:25:00 pm), thank you for your support it is much appreciated.
"Pof g. Let's get this straight. We donate for you to do a power study to then try to get a trial funded elsewhere? If you don't get this funded our money is wasted?". Think of it this way if this works your few pounds started a process that will do unbelievable good and if it does not work you have probably wasted less than you wasted on the lottery last year.