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    Thank you to everyone who helped fund the beginning of Charcot Project 2!!!!

    This project involves identifying and treating a viral cause for MS. It has taken donations from MS patients, caregivers, and supporters to get Charcot 2 up and running using crowdsource funding.

    I believe it is a great day because it proves people are willing to fund research directed toward cause, cure, and prevention.

    Quoting from Barts MS Blog…

    “there is an enormous amount spent on multiple sclerosis-the only problem is, it’s spent on dealing with the adverse consequences of not having given access early to effective interventions or having a proper prevention program. I believe that people can be coached into becoming literate about multiple sclerosis and the early intervention will improve self-management and avoid lifelong bad outcomes for many pwMS.”

    “Hopefully the Charcot project will help catalyze an MS prevention program”

    Thank you again!

    Comment


      A virus causes MS according to the following study:

      Epstein Barr Virus—The Cause of Multiple Sclerosis

      Journal of Applied Mathematics and Physics, 2016, 4, 1042-1053 Published Online June 2016 in SciRes.

      http://file.scirp.org/pdf/JAMP_2016061314500533.pdf

      Quote, “A particular aspect of our study is the identification of Epstein-Barr Virus (EBV) as the cause of multiple sclerosis. Since without an infection by Epstein-Barr Virus (EBV) no multiple sclerosis develops and due to the fact that there is a highly significant causal relationship between Epstein-Barr Virus (EBV) and multiple sclerosis, we are allowed to deduce that Epstein-Barr Virus (EBV) is not only a cause but the cause of Multiple Sclerosis (MS).”

      CONCLUSION:

      “A particular aspect of our study is the identification of Epstein-Barr Virus (EBV) as the cause of Multiple Sclerosis (MS). Finally, the cause of multiple sclerosis is identified. Consequently, it is more than necessary to develop a low-cost and highly effective vaccine against Epstein-Barr Virus (EBV).” End Quotes

      Comment


        Soooo, I was going to read the pdf, but I quickly changed my mind once I saw all the formulas involved.

        I'm seeing my neurologist on Tuesday and will have a discussion with her at that time.

        Does one acquire the EPV virus and then it lies dormant until a precipitating event? I was diagnosed at 58 1/2 versus someone who was diagnosed at 26. At least in my case, I know stress allowed my MS to present itself.

        I, personally, believe that EBV could be the cause of many cases of MS, but I find it hard to believe it is the ONLY cause of MS. For some, I believe genetics is involved. In my case, autoimmune diseases run in my family with 3 cases of RA and one case of Lupus.

        I do hope they can develop a vaccine that could be given to everyone, in hopes of preventing most cases of MS. It would be like the HPV vaccine that will hopefully eradicate cervical cancer in the coming years.

        So many questions, but at least a place to start.

        Comment


          [QUOTE=ru4cats;1495174]

          Does one acquire the EPV virus and then it lies dormant until a precipitating event? I was diagnosed at 58 1/2 versus someone who was diagnosed at 26. At least in my case, I know stress allowed my MS to present itself.

          I, personally, believe that EBV could be the cause of many cases of MS, but I find it hard to believe it is the ONLY cause of MS. For some, I believe genetics is involved. In my case, autoimmune diseases run in my family with 3 cases of RA and one case of Lupus.

          I do hope they can develop a vaccine that could be given to everyone, in hopes of preventing most cases of MS. It would be like the HPV vaccine that will hopefully eradicate cervical cancer in the coming years.
          [/I]

          You make so many good points! The belief among many is that a EBV vaccine would indeed prevent MS. No EBV = no MS. That is the conclusion of the study above which is essentially a mathematical probability if you look at the study.

          But why doesn't everyone who has been infected with EBV get MS? Because EBV only begins a process, a cascade which may end in MS if certain genetic susceptibilities are present along with certain and various known environmental risk factors... such as stress, low vitamin D, smoking, infections, birth month, etc.

          EBV causing MS is not a direct cause and effect like a virus causing a cold. We know, for example that EBV provides the environment which permits HERV to replicate and many believe MS is a response to HERV replicating. It is known that even in a latent state EBV can allow HERV to replicate. So the EBV infection does not have to be active; only that it took place sometime during a person's life.

          One of the most recent experimental treatments (GNbAC1) was highly successful in small trials treating HERV. We will see more of this particular treatment in larger trials in the very near future, I'm certain.

          Some researchers firmly believe that a vaccine to prevent EBV would prevent MS. That doesn't help anyone with MS obviously, but it is definitely a theory worth testing to prevent MS in those who don't have it. And, it should be attempted ASAP because it may take 50 years to prove preventing EBV infection would prevent MS. There are researchers willing to do this but it requires a lot of money. Let's hope interest is generated by our discussions.

          The answer to MS may be a simple vaccine to prevent EBV infection. And, IMO, very likely is the answer.

          Comment


            Thanks, Myoak. With the additional information, it does makes sense. I had no idea what I was looking at in the pdf (math was my weakest subject ) I will ask my neurologist about her thoughts when I see her on Tuesday (My list of questions continues to grow. She always anxiously awaits my arrival. ). As long as a vaccine did no harm, it certainly couldn't hurt and might definitely prove the hypothesis. I know my niece who recently became a nurse-practitioner specializing in women's heath, said the drop in cervical cancer cases with the addition of the vaccine have fallen off a cliff. Perhaps the same would be the case with MS? With luck, time will tell.

            Comment


              I invite those interested in research about a viral cause for MS to view a recent slide presentation by one of the world’s leading MS researchers, Dr. Gavin Giovannoni ...

              http://multiple-sclerosis-research.b...ject.html#more

              Quote… “The Charcot Project is an initiative that Professor Gold and I (Gavin Giovannoni) launched about 5 years ago to tackle MS from a different perspective; a perspective that MS is caused by a virus and to tackle MS we need to start doing treatment trials using anti-virals. The two leading viral contenders are EBV and HERVs. If you have any queries about the slides please feel free to ask.

              In this presentation, I stress the point that I have made several times before that MRI activity (new Gd-enhancing lesions) and relapses are not MS, the disease. If they were the disease they would predict MS outcomes whether or not you are on a DMT. The data indicates they only predict outcomes when you are on a DMT. Based on Prentice criteria of what constitutes a surrogate end-point for a disease both relapses and MRI activity fail.

              I then review the observation that changes occur weeks to months in the white matter before a new focal lesion occurs. This would indicate something is happening in the brain of pwMS prior to inflammation ('Field Hypothesis'). This may explain the Prineas lesion, i.e. oligodendrocyte apoptosis without overt inflammation. The million dollar question is what is killing the oligodendrocyte?

              I then review the epidemiology evidence supporting EBV and possibly HERVs as the viral aetiology of MS. I complete the lecture with some experiments that need to be done to prove that EBV is the cause of MS. Simple? I wish! Trying to get funding for studying the viral cause of MS is very difficult and slow, but we will get there, eventually.”

              Comment


                Quote, “The Charcot Project is an initiative that Professor Gold and I (Gavin Giovannoni) launched about 5 years ago to tackle MS from a different perspective; a perspective that MS is caused by a virus and to tackle MS we need to start doing treatment trials using anti-virals. The two leading viral contenders are EBV and HERVs." End Quote

                Another (this is not the first time) patient with MS taking an anti-retroviral drug has experienced a significant improvement in MS.
                Hopefully, we will see another MS trial using an anti-retroviral drug soon!

                Below is a quote from this report:
                Drosu NC, Edelman ER, Housman DE. Could antiretrovirals be treating EBV in MS? A case report. Mult Scler Relat Disord. 2018 Feb 27;22:19-21.

                "We present the case of an HIV-negative patient clinically diagnosed with relapsing-remitting MS who achieved significant disease improvement on Combivir (zidovudine/lamivudine). Within months of treatment, the patient reported complete resolution of previously unremitting fatigue and paresthesiae, with simultaneous improvements in lesion burden detected by MRI. All improvements have been sustained for more than three years. This response may be related to the action of zidovudine as a known inhibitor of EBV lytic DNA replication, suggesting future directions for clinical investigation."

                Comment


                  “The Charcot Project is an initiative... to tackle MS from a different perspective; a perspective that MS is caused by a virus."

                  Geneva, Switzerland, and Paris, France, March 26, 2018 – GeNeuro (Euronext Paris: CH0308403085 – GNRO) and Servier announced today positive results at 12 months from the CHANGE-MS Phase 2b study of GNbAC1, a novel and promising therapeutic approach for the treatment of multiple sclerosis (MS). The data showed that GNbAC1 administration had a significant, consistent positive impact on key neuroprotection markers known to be linked to disease progression. This is the first time that the benefit of a treatment targeting endogenous retrovirus protein is shown in a clinical trial.

                  https://servier.com/en/communique/ge...e-sclerosis-2/

                  “These results are a significant success... as they demonstrate the role played by pathogenic HERV-W protein in patients affected by MS. It supports the concept of altering the neurodegenerative course of MS by treating a causal factor of the disease, as suggested by preclinical research,” stated Jesús Martin-Garcia, CEO of GeNeuro.

                  "GNbAC1 is a monoclonal antibody designed to neutralize a pathogenic protein encoded by a member of the Human endogenous retroviruses (HERV-W) family. HERVs are ancestral, retroviral DNA insertions in the human genome, thought to account for up to 8% of the total DNA. The pHERV-W protein is thought to be a causal factor in the development of multiple sclerosis, Type 1 diabetes and CIDP."

                  Why is this news significant? Because this is the first treatment directed at the cause of MS. Quoting Professor Gold, "The reason this is so important is that current therapies aim to suppress the immune system not to control the possible cause. This treatment aims at controlling the cause or trigger which is the way all disease should be treated."

                  Comment


                    I am in limbo at the moment but MS is highly suspected. I went to a doctor who specializes in alternative medicine and she tested me for EBV. I had really high levels of the IgG antibody which indicated a reactivation of EBV. I did not have mono though. So I must have contracted it at an early age without getting sick from it. I will read the article and I'm excited about all the math in it! But I was wondering if anything has been mentioned about a situation like mine where the EBV IgG antibodies are high and EBV reactivation and any relationship to MS?

                    Comment


                      [QUOTE=mathgirl24;1508278]I am in limbo at the moment but MS is highly suspected. But I was wondering if anything has been mentioned about a situation like mine where the EBV IgG antibodies are high and EBV reactivation and any relationship to MS?[/QUOTE]

                      Yes, there is a great deal of evidence that EBV is driving MS. You can google, "Multiple Sclerosis and EBV: Relapsing Together" for one article.

                      EBV is one of the herpes virus, all of which trigger HERV expression but EBV is particularly effective activating HERV whether the EBV is active or even latent, as demonstrated by this study... "Activation of MSRV-Type Endogenous Retroviruses during Infectious Mononucleosis and Epstein-Barr Virus Latency: The Missing Link with Multiple Sclerosis?"

                      Some speculate if there were no EBV there would be no MS. Until there is a large trial vaccinating against EBV we will not know for sure. However, if replication of HERV is a large part of the MS story as some believe and things other than EBV activate replication of HERV, also, then other treatment options may be beneficial, too by thwarting the replication of HERV. Things like GNbAC1 or anti-retroviral drugs.

                      If you start at the beginning of this thread many of these ideas are presented and discussed.

                      Mathgirl24, you cannot imagine how sincerely I desire MS not affect your life, or anyone else's. I want you to live your best life in health and happiness. There are researchers motivated by similar desires. One such group can be found at: http://multiple-sclerosis-research.blogspot.com/.

                      They are outstanding MS researchers, they distill and present the most current, pertinent MS research, IMO.

                      Knowledge is power. Good luck you!
                      Rolly

                      Comment


                        Could antiretrovirals be treating MS? A case report.

                        Quote,
                        "We present the case of an HIV-negative patient clinically diagnosed with relapsing-remitting MS who achieved significant disease improvement on Combivir (zidovudine/lamivudine)... the patient reported complete resolution of previously unremitting fatigue and paresthesiae, with simultaneous improvements in lesion burden detected by MRI. All improvements have been sustained for more than three years. This response may be related to the action of zidovudine as a known inhibitor of EBV lytic DNA replication...

                        "The epidemiological link between multiple sclerosis (MS) and the Epstein-Barr virus (EBV) is well-established (Ascherio et al., 2012), but the role of EBV in MS pathology and clinical progression remains controversial...

                        "In September 2014, a 25-year old female student presented to her university's health services clinic complaining of progressive inability to feel her right leg for two months. She also felt severe fatigue and worsening bilateral leg pain aggravated by walking...

                        "MRI revealed multiple small brain lesions. Additional lesions were detected in the right peripheral cord at the C4 and C6 vertebral levels...

                        "The patient recalled a long history of relevant clinical symptoms... she was diagnosed with clinically definite relapsing-remitting MS (RRMS).

                        "... she was started on glatiramer acetate injections. While on glatiramer acetate, she was sleeping more than 16 h a day without feeling rested, developed increasingly disabling pain in her arms and legs, and could not walk more than 100 feet without needing to sit down... decline continued...

                        "Because of this clinical decline and local skin reactions, she stopped treatment with glatiramer acetate in December 2014. Repeat MRI performed on January 9, 2015 (Fig. 1) showed a new lesion in the cervical spine at C3 (Supplemental Figure) as well as more pronounced lesions at C4 and C6. The patient, a medical student, after reading a case report of MS with sustained resolution of symptoms on HAART (Maruszak et al., 2011), independently started therapy with Combivir (zidovudine 300 mg/lamivudine 150 mg) twice daily. During this time, she was under medical supervision in accordance with standard of care and well-established guidelines for Combivir treatment...

                        "A few days after starting Combivir, she noticed dramatic improvement in fatigue. After two months, she had gradual improvement in numbness and pain in her arms and legs. Her neurologic exam on March 24, 2015 (11 weeks after starting Combivir) was normal. After nine months, she had minimal numbness in her feet, only noticeable after walking for long stretches. She could go jogging for the first time in years...

                        "Repeat MRI was performed on September 22, 2015 (after 8.5 months of Combivir). The previously described cervical and thoracic cord abnormalities were significantly less distinct compared to prior study (Fig. 1). The brain MRI abnormalities remained stable with no change on subsequent imaging. The patient has now been on Combivir for more than three years. During this time, she has experienced no new symptoms, and all described improvements, including complete cessation of MS-related fatigue, have been sustained to date. Follow-up MRIs performed on December 7, 2016 and December 6, 2017 (Fig. 1) revealed no new focal lesions."

                        https://www.msard-journal.com/articl...082-8/fulltext

                        If the link does not work for you please google the article title,

                        Could antiretrovirals be treating MS? A case report.

                        Comment


                          TREATING THE CAUSE OF MS, Dr. Michael Pender

                          Pender identifies the cause of MS and explains treating Primary and Secondary MSers in a Phase 1 trial in this podcast.

                          https://soundcloud.com/bioanalysis-z...osis-treatment

                          In this interview, Dr. Pender discusses the relationship between MS and the Epstain-Barr virus; a link that has been observed in recent studies, and which forms the basis of this most recent clinical trial. In the Phase I study, researchers removed the T cells from six patients with progressive MS, stimulated the T cells to increase their ability to recognize and destroy Epstein-Barr virus-infected B cells, and the injected these T cells in infusions every 2 weeks over a 6-week period. At this interim point, three participants have showed improvement, with one showing “striking improvement”. In the interview, Dr. Pender, lead researcher of the trial, discusses the key findings of the trial, and the next steps following these exciting developments.

                          Comment


                            Treatment for a viral cause in MS is successful in human trial!

                            Temelimab, formally called GNbAC1, works by neutralizing a particular HERV (Human Endogenous RetroVirus) called MSRV (MS-associated RetroVirus) found in active MS lesions. Temelimab neutralized MSRV by walling off MSRV proteins. Viruses are comprised of strings of proteins. Temelimab blocked inflammation and RESTORED myelin in human trial.

                            If trials continue going as well as they have thus far, this promises to be a new, amazingly effective, and widely adopted DMT for MS.

                            BTW, how does EBV figure into this? EBV is a catalyst which prompts HERVs like MSRV to replicate. See previous posts in this thread relative to that point.

                            Here is a Jan. 26, 2019 article about Temelimab...

                            Positive Safety Data Reported for High-dose MS Treatment Candidate Temelimab

                            'GeNeuro has reported positive data from a Phase 1 clinical trial (NCT03574428) trial evaluating the safety and tolerability of high doses of GNbAC1, developed for the treatment of neurological and autoimmune disorders, including multiple sclerosis (MS).

                            The company also announced that the World Health Organization has assigned the international nonproprietary name “temelimab” to GNbAC1.

                            The development of temelimab is the result of a quarter century of research into human endogenous retroviruses, which are stretches of foreign, viral DNA inserted into the human genome. Some human endogenous retroviruses are known to be associated with auto-immune diseases. For example, one of these viruses, the MS-associated retrovirus (MSRV), encodes a protein (MSRV-envelope protein, or MSRV-Env) that is found in MS patients, particularly in active lesions.

                            Temelimab, a monoclonal antibody, works by neutralizing the MSRV-Env protein associated with MS, and subsequently blocks inflammation. Also, the therapy was shown to restore myelin, which is the insulating sheath around nerve fibers that is compromised in MS patients.

                            This new trial follows a previous GeNeuro clinical trial testing temelimab in the treatment of MS, the CHANGE-MS study (NCT02782858). In October 2018, GeNeuro announced the final results of this Phase 2b study, showing that temelimab could reduce the levels of key markers related to MS progression, lessen brain atrophy and lesion load, and protect the nervous system.

                            In the CHANGE-MS study, three temelimab doses were tested: 6, 12, and 18 mg/kg. Only the highest dose (18 mg/kg) was effective in blocking MS disease progression; the lower doses had no noticeable effects. This suggested that further clinical studies were needed to evaluate the safety of higher doses.

                            Now, in the Phase 1 trial, GeNeuro tested the safety of temelimab at a higher dose range. Four doses were tested: 36, 60, 85, and 110 mg/kg. The trial was a randomized, double-blind, placebo-controlled study with 24 healthy volunteers.
                            Results showed that no adverse events (side effects) related to safety occurred when taking temelimab at all the higher doses tested, suggesting that the therapy had a robust safety profile even at higher doses.

                            “The results from this high-dose study support and expand the large amount of positive clinical data we already have regarding temelimab’s safety, tolerability and efficacy,” Jesús Martin-Garcia, chairman and CEO of GeNeuro, said in a press release.

                            “Temelimab is the first treatment targeting an MS mechanism to have shown robust and consistent effects on key neuroprotection markers in clinical trials. The success of this Phase 1 study allows us to explore whether higher doses of temelimab provides additional benefit in MS patients as well as broadening the therapeutic areas for which this drug candidate could be used,” Martin-Garcia said.'

                            https://multiplesclerosisnewstoday.c...ampaign=buffer

                            Comment


                              Hallelujah!

                              Comment


                                This is EXCITING!!
                                God Bless Us All

                                Comment

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