CrowdSpeak: so near yet so far out of reach

We are almost there with your first Crowding Funding initiative; Thank you. #CrowdSpeak #MSBlog #MSResearch

"Your Crowdfunding initiative is close to 90% of its target; I am truly amazed at how quickly we have done this and your enthusiasm for the project. Thank you."




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"The first study done under the Charcot Project umbrella, the INSPIRE or raltegravir trial, finished last year and was negative. We will be submitting two papers on the results in the next few weeks and presenting the results at a congress sometime this year. "

"To take the Charcot project forward we have decided to focus on EBV component of the viral jigsaw puzzle in the next trial. To make the case regarding the retroviral component of the study we need more biomarker data whether or not the anti-retrovirals are having an effect on HERVs (human endogenous retroviruses) and we also need more epidemiology data on whether or not our observation of lower MS rates in HIV infected individuals is due to anti-retrovirals or some other factors."

"You may recall that you the community suggested crowdfunding and had a vote between two projects (Charcot project 2 vs. the ZEUS Trial). You chose the former and gave the trial its name (ARTEMIS - Antiretroviral Treatment for Epstein-Barr Virus in MultIple Sclerosis) and you helped resolve some early design questions. For example, the following is your feedback on some of the inclusion and exclusion criteria."


"We love the name ARTEMIS as it is the name of a Greek moon goddess often portrayed as a virgin huntress. The primary aim of the Charcot Project is to hunt down the viral cause of MS; so having a trial named after a huntress seems appropriate. Even if we simply focus on the EBV component of this study the namer ARTEMIS still works; (ARTEMIS - AntiviRal Treatment of Epstein-Barr Virus in MultIple Sclerosis) "

"Some may ask what is the rationale for doing this study? There is emerging evidence that EBV and HERVs are involved in MS. Some of us in the MS community are of the opinion that EBV causes MS and that if you can prevent people becoming infected with EBV you may prevent MS. We don't know how EBV causes MS. One of the theories that we are investigating is that EBV causes MS via its interaction with HERVs."

"HERVs are viruses that live in our genome; about 6-8% of the human genome is HERVs. Why do we have so many HERVs in our genome? Evolution has selected for them because they must give us, and other mammals, a survival advantage. For example, one HERV protein is critical for the development of the human placenta. Mammals who don't have a placenta (marsupials) don't have this HERV. As HERVs are sort of 'foreign', the human body has developed intricate ways of detecting them and if they are found to be expressed in a cell the cell's internal immune system flags that it is infected with a virus so that the immune system can eliminate the cell. This so called danger signal is often is what is needed to activate the external immune system and if this happens to be an autoreactive immune cell it can trigger autoimmunity. Interestingly, there is a very rare disorder due to mutations in the systems that detect and suppress HERVs in cells. The children with these mutations present with multiple autoimmune diseases indicating that uncontrolled HERV expression can drive autoimmune disease. You may be aware by now that there is emerging data that MSers have evidence of increased HERV expression in the cells of the peripheral blood and possibly in their brains as well. At present we don't know if MS causes HERV expression or does HERV expression cause, or drive, MS? This is one of the reasons we are so interested in HERVs."

"So how do EBV and HERVs relate to each other? It turns out that herpes viruses, in particular EBV, are potent transactivators of HERVs. In other words EBV does something to wake-up the sleeping HERVs in our genome and increases their expression. This is the rationale for using drugs to reduce EBV activity in the hope they will suppress HERVs."

"I am aware that what I am saying above is complex, but I hope it sets out the rationale and makes the case for using an anti-EBV drug in MS. The proposed ARTEMIS study will hopefully provide us with necessary virological and safety data to make the case for doing a larger efficacy study in MS."




"This remains a community project so please feel free to comment. Thank you."

CoI: multiple and Team G will be recipients of a grant from Crowdacure to perform this research

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