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    Thank you, Myoak, for your tireless and ongoing commitment for bringing this research to us. It's all really fascinating!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      Thanks again, Myoak ! I noticed that you started this thread around Thanksgiving 2012 !
      Nearly7 years ago ! Thank you for uncovering the information and delivering it to us,MSers !
      And for sticking with it for that period of time ! Anything good is worth waiting for ! (hanging participle, oops)
      I will be checking every possible medical facility in Philadelphia to find the trial location !

      Comment


        Originally posted by JerryD View Post
        Thanks again, Myoak ! I noticed that you started this thread around Thanksgiving 2012 !
        Nearly7 years ago ! Thank you for uncovering the information and delivering it to us,MSers !
        And for sticking with it for that period of time ! Anything good is worth waiting for ! (hanging participle, oops)
        I will be checking every possible medical facility in Philadelphia to find the trial location !
        Jerry, you are welcome!

        Here are the locations and contacts for this trial in the US found in the link below. Please don't forget about the inclusion and exclusion criteria which needs be read in the link.

        https://clinicaltrials.gov/ct2/show/...83826#contacts

        Locations

        United States, Arizona
        Mayo Clinic Recruiting
        Scottsdale, Arizona, United States, 85259
        Contact: Tina Anderson 480-301-4302 Anderson.Machiko@mayo.edu
        Principal Investigator: Jonathan L Carter, MD

        United States, Louisiana
        The NeuroMedical Center Clinic, PC Recruiting
        Baton Rouge, Louisiana, United States, 70810
        Contact: Crystal Whiddon, LPN 225-761-2569 crystal.whiddon@intraFUSION.com
        Principal Investigator: April Erwin, MD

        United States, Pennsylvania
        University of Pennsylvania Recruiting
        Philadelphia, Pennsylvania, United States, 19104
        Contact: Jessica A Dobbins 215-349-5162 Jessica.Dobbins@uphs.upenn.edu
        Principal Investigator: Amit Bar-Or, MD

        United States, Texas
        The University of Texas Health Science Center at Houston Recruiting
        Houston, Texas, United States, 77030
        Contact: Theresa K Dancsak, MSN, RN 713-704-4137 Theresa.Dancsak@uth.tmc.edu
        Principal Investigator: John W Lindsey, MD

        To KittyCoCo, Jerry, Seasha, and all... you are the lovely, kind people who inspire my studies. You, and anyone reading this, are dearly welcome for anything good which may come from my efforts.

        Comment


          Just a small point of interest. I did a short cursory check online with any publications from the NMSS . I didn't find any mention of the Charcot Project ! Am I missing something ?

          Comment


            Originally posted by JerryD View Post
            Just a small point of interest. I did a short cursory check online with any publications from the NMSS . I didn't find any mention of the Charcot Project ! Am I missing something ?
            The NMSS has not contributed to Charcot Project funding; the NMSS is not a part of the Charcot Project.

            The Charcot Project, searching for a viral cause for MS, is an initiative that Australian doctor - researcher Julian Gold and London researcher Dr. Gavin Giovannoni launched about 7 years ago to tackle MS from the perspective that MS is caused by a virus; they emphasize treatment trials using anti-virals. The two leading viral contenders are EBV and HERVs.

            So, in this Charcot Project thread we talk primarily about companies and researchers who are targeting EBV and HERV in people with MS.

            As far as I know, the NMSS has not help fund the Charcot Project, thus far, but perhaps will in the future.

            I hope to see more funding in this direction!

            Comment


              My reason for my questions is " If the NMSS is an organization that is supposed to inform the MS community, Why is there no word from the NMSS about the Charcot Project "? Simply that question !

              Comment


                I find it very interesting that the Charcot Project has focused on a viral cause for multiple sclerosis and the NMSS hardly shows any interest in reporting on the projects developments . In a book, by deceased author Anne Boroch, her main focus, as the culprit / cause of the disease is on yeasts, viruses, etc. and other malicious invaders of our human bodies ! I don't recall if Anne includes EBV but I am sure she was on to something, even though she wasn't a medical doctor !

                Comment


                  Where is the Charcot Project online?

                  I have been trying to find out more information on the Charcot Project . Where can I search, online, to find this information? Any suggestions are welcome !

                  Comment


                    Originally posted by JerryD View Post
                    I have been trying to find out more information on the Charcot Project . Where can I search, online, to find this information? Any suggestions are welcome !
                    Hello Jerry,

                    The first trial using an anti-viral drug to treat pwMS was not successful. But please note that the drug used was done so because the company manufacturing it funded the “Inspire” trial of it in MS, not because it was the best anti-viral available.

                    The drug used was not effective against EBV or HERV and the highest interest remains in trials focused on developing treatments for those. We have discussed those current and ongoing trials here in the Charcot Project thread. Below is link and a bit more about the first trial as part of the Charcot Project, that concept which focuses on a viral cause for MS.

                    Personally, I strongly believe anti-viral research and treatment will provide the solution to MS. The first trial was not successful, however, new trials are ongoing. Please understand there is no grand, funded scheme named the Charcot Project. Rather, the Charcot Project is the concept that there is a viral cause for MS and treatments directed toward a viral cause are included under the umbrella called the Charcot Project if they treat viruses.

                    IMO, the most interesting current trials in MS are the anti-viral trials this thread has recently discussed.

                    Here is an article to help explain the failure of the first anti-viral trial in MS...


                    INSPIRE, EXPIRES: THE FIRST BREATH OF THE CHARCOT PROJECT

                    https://multiple-sclerosis-research....arcot-project/

                    Is MS a problem caused by a virus?

                    Is the world flat?

                    The INSPIRE trial set out to investigate one of these following an anecdote that a person, who had MS but was treated with HIV-inhibiting treatment, did well.

                    Was this a fluke or the beginning of a new era in MS research?

                    You know the answer. Yep, the trial was not a success.

                    This study looked at raltegravir, rather than looking at HAART, which is a cocktail of drugs used to inhibit HIV.

                    Why? Because a company making raltegravir sponsored the study.

                    However, raltegravir is an integrase inhibitor. This means it aims to stop virus integrating into the host’s genome to cause infection.

                    This is what HIV does to infect.

                    However, for a human endogenous retrovirus, the virus integrated probably a few thousand years ago.

                    Other viruses may not integrate. Therefore, would raltegravir be the most logical choice of an anti-viral? Perhaps not.

                    So, whilst the trial failed it does not say the idea of a viral cause of MS is dead.

                    Comment


                      Thanks for your explanations, Myoak. On a similar track, I think I read that Prof. Pender had some success with an anti viral treatment for a patient with MS. And that patient did improve. I guess keeping track of Prof. Pender would be the place to find info .

                      Comment


                        Why is it so difficult to find current information on the Charcot Project ? I searched online and found very little information about it . Can someone point me to a web address that gives current information?

                        Comment


                          Originally posted by JerryD View Post
                          Why is it so difficult to find current information on the Charcot Project ? I searched online and found very little information about it . Can someone point me to a web address that gives current information?
                          Charcot Project

                          An overview of the Charcot Project
                          https://www.youtube.com/watch?v=GTD1Bp-LZk4

                          Virology: an update of The Charcot Project - Julian Gold
                          https://www.youtube.com/watch?v=Ss5alRN9voA

                          Click site below then click on the search box in the upper right corner and enter Charcot Project
                          https://multiple-sclerosis-research.org/

                          Comment


                            Thanks, Myoak !

                            Comment


                              Originally posted by ru4cats View Post
                              Thanks, Myoak. I subscribed to the site. I SO hope the drug is successful so patients like Selma Blair have a better future.
                              Speaking of Selma Blair,

                              I believe she posted on Instagram a couple weeks back about intention to get HSCT. I can no longer find her post so it may be that she changed her mind about saying anything publicly. However, several people noticed her post and commented. I found this one particularly interesting...

                              www.mumsnet.com/Talk/_chat/3614880-Selma-Blair-is-doing-HSCT-for-MS

                              Quote, "Basically MS is an auto immune problem. So what they do is give you 4 doses of chemo, just enough to kill your faulty immune system. Then they take your own stem cells (so there is no chance of rejection. They give you shots to accelerate the growth of them), and give them back to you so you grow a new MS free immune system.

                              I’m thrilled for her. I did the same 2.5 years ago and it was the best thing I’ve ever done.

                              As she is very famous and she’s openly doing it, it’s going to really highlight it and I’m really happy about that. I think more celebs have probably done it but they don’t talk about it.

                              I did it privately and it cost $50K. Most people fund raise if they can’t self fund. There's also a pay it forward attitude with the people that have done it. A lot of the time if someone has done the treatment and has fundraising money left over then they will pass it on to someone else that is doing it.

                              Some people get on trials. To get on a trial you usually have to have tried and failed 2 of the DMT drugs. I remember about 3 years ago going through the JACIE (Worldwide HSCT accredited facilities) list and emailing everyone. There were pages of it. Generally they treated cancer patients but because HSCT for MS was getting more press quite a few said they would be offering it to MS patients in the next few years.

                              It’s not a new treatment. I have met and spoken to doctors that have been doing it since the early 90’s, that keep in touch with their patients and those patients are still doing well.

                              It has an 80% success rate and 40% will see some improvement in their symptoms, but the aim is to stop progression.

                              Risks - You could be sick from the chemo. You only have 4 doses of low doses of chemo, just enough to kill the bad immune system, so it's a lot less than the average person has when undergoing cancer treatment.

                              The DMT's carry a lot of risks too. So it's about choice. For me personally, I was looking for a cure/a stop. So a DMT felt like putting a band aid on a gaping wound IYSWIM, so HSCT was the choice I made.

                              I started a thread earlier about this but mumsnet took it down because on one post I had put a link to a clinic where people could find out more information if they wanted to.

                              I have not included any links in this post as I don’t want it deleted again. I have tried to answer questions that other people asked on it though.

                              I really hope that Selma Blair is in the 80%. I wish her all the luck in the world.

                              Selma Blair is very open about MS and how it has affected her. She did an interview here". www.youtube.com/watch?v=hsJOqH5BR3E
                              End Quote

                              Comment


                                A word more about HSCT and viral infection of the autoimmune system...

                                HSCT has been notably effective for most, but not everyone. HSCT appears to be the most effective way to deal with MS in younger patients. Younger MSers have more neurological reserve which means they have more ability to recover lost function if disease progress can be slowed or halted.

                                How does HSCT slow or halt progress? Not unlike other highly effective DMTs such as Tysabri, Ocrevus, or a new DMT soon to be reported, Ofatumumab. In the opinion of many researchers, MS is caused by a virus and the virus is carried by certain B-cells. HSCT is an immune reconstitution therapy. The idea is that by wiping out the immune system you destroy the virally infected B-cells and when the immune system reconstitutes minus virally infected autoimmune cells MS will remain in remission. HSCT has worked well for the majority doing it. However, virally infected B-cells may repopulate post HSCT in some people.

                                Ocrevus kills selected B-cells, those thought to be harboring the viral infection. Tysabri keeps the infected B-cells out of the CNS by blocking them from crossing the blood brain barrier.

                                There is a new B-cell depleter that will be reported on in about 2 weeks at ECTRIMS called Ofatumumab. It is being given at a dose of 20mg subcutaneously monthly; so, a pwMS can do this treatment at home. This dose was chosen to keep B-cells depleted, but not severely depleted, so as to allow rapid repopulation of peripheral B-cells numbers if ofatumumab is stopped. In other words, B-cell depletion is relatively mild compared to HSCT or Ocrevus. Hopefully, this would leave the immune system more intact to fight cancer, combat infections, etc.

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