From Diane Kane…
Welcome to talkMCAS.com. Thank you for your time and for your consideration of Mast Cell Activation Syndrome, commonly known as MCAS (em-kass). Please note that MCAS is a highly-prevalent yet largely undiagnosed blood disorder impacting an estimated 17% of the global population. Over the past year, several of the world’s top MCAS experts have published medical research papers on the suspected co-morbid disease process that is most likely occurring between MCAS and Covid-19. MCAS may very likely be causing many debilitating multi-systemic complications for Covid-19 patients and MCAS therapeutics could possibly be of great aid in overcoming the current pandemic.
Please visit the Research Section on talkMCAS.com to access links to the MCAS/Covid-19 research papers: Potential Association of Mast Cells with Coronavirus Disease 2019 from Dr. Theoharis C. Theoharides of the Laboratory of Molecular Immunopharmacology and Drug Discovery, Department of Immunology, Tufts University School of Medicine, Boston, Massachusetts, USA and Covid-19 Hyperinflammation and Post-Covid-19 Illness May Be Rooted in Mast Cell Activation Syndrome from Dr. Gerhard J. Molderings of the Institute of Human Genetics, University Hospital of Bonn, Bonn, Germany; Dr. Lawrence B. Afrin of the AIM Center for Personalized Medicine, Purchase, New York, USA; and Dr. Leonard B. Weinstock, Department of Medicine, Washington University, St. Louis, Missouri, USA.
There are also two video presentations available for you to view freely that were filmed during an MCAS awareness event held in Jupiter, Florida in October of 2019, a few months prior to the global emergence of the SARS2 virus. The first video is a highly-informative MCAS-101 presentation from MCAS specialist Dr. Lawrence B. Afrin, a board-certified Hematology-Oncologist and author of the groundbreaking book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity. The second video is my presentation on MCAS from the patient perspective, as I understood it at the time. Since the filming of these videos, through studying a great deal of research conducted by clinicians and scientists worldwide during the current pandemic, my doctors and I have come to believe that I may have contracted SARS during a trip I took to Vietnam in 2003. Like many people early in the current Covid-19 breakout, testing for SARS was not available nor even considered in the USA upon my return from overseas when I became seriously ill.
With the Covid-19 pandemic upon us it may seem confusing to try to understand yet another seemingly unrelated medical condition, however I hope that you will approach this with an open mind because there are important answers in MCAS which could aid significantly in the battle against Covid-19. The top MCAS specialists in the world are telling us that they believe the root issues conferring vulnerability for severe Covid-19 episodes, as well as the ongoing medical issues which are so profoundly impacting the Long-Covid population, are both rooted in Mast Cell Activation Syndrome. We need to hear these experts and, most importantly and most urgently, we need to get our leaders in government, healthcare and the media to hear these experts as well.
We are being told clearly by the experts that the Covid-19 population is at-risk for MCAS, which can present in a myriad of different ways in a variety of organ systems with widely variable degrees of severity. The medical world needs to start a rigorous dialogue about the human host immune response to the SARS2 pathogen. In all viruses, the pathogen invades the host with the sole intention of replication and the viral proteins work with great intention to reprogram the host immune system to achieve both residential and replicative status within the host. Technological advances in what microscopes can now view at a sub-cellular level are revealing these epigenetic processes in ways that were previously not possible. It is being shown through the most advanced forms of investigational science that there are molecular modifications occurring within the lipid rafts of the membrane walls of those who are infected with SARS2 and that disordered cholesterol in the body of the host weakens lipid structures conferring vulnerability to these modifications.
It is within our scientific and medical capacities to begin the process of identifying the large segment of the global population who are at greater risk for a course of infective disease from SARS2, as well as those at-risk for the MCAS complications presenting in the Long-Covid sequalae. I do not propose to have all of the answers, for nobody does at this time. What I am trying to convey as respectfully and compassionately as possible is that we are not even asking the right questions. With that said, one very reasonable question for people to ask is who is this person stepping forward to try to share this information and why should I give credence to any of it.
First and foremost, I am not asking for blind faith in my opinion. I am asking you to review the work of the mast cell experts who have published on this science. And I am asking for an open-minded, science-based dialogue. As far as my personal qualifications go, I am a suspected SARS sufferer from a trip to Vietnam in 2003 who was finally diagnosed with MCAS at Cedars-Sinai in 2017 after a long and physically-consequential battle. I am a politically-independent 56-year-old American female who has established talkMCAS.com to provide an open research platform with the sole intention of introducing the emergent mast cell science to people with the goals of increasing knowledge and alleviating suffering. Through educating both doctors and patients, the world can start to better understand the host immune response to SARS2 and to mitigate against the potential progression of these co-existing and interdependent medical conditions. I wish to help people to avoid grave illness, to help people who have these conditions to find healing, and to prevent people from having to go through the long and arduous journey that I and many others have already gone through.
I am currently working on a research book which will depict the MCAS and Covid-19 co-morbid disease process and I will be posting the work in an open-forum for all to access on talkMCAS.com as soon as I obtain the necessary copyright permissions. Meanwhile, and always, I will make the work available to scientific researchers, government leaders, public health officials, doctors, journalists and all medical personnel and healthcare stakeholders worldwide who wish to review it. To obtain a PDF version of the early chapters of The MCAS and Covid-19 Theory, please email a request to info@talkMCAS.com.
And so, for now, I will briefly try to explain some of what I have learned to date. MCAS is a result of epigenetically-acquired mutations, also accurately described as molecular modifications, in the mast cells of people vulnerable to this immune-compromising disorder. My personal medical history clearly reveals that MCAS was active in me long before I contracted what we now believe was SARS. And, it is MCAS that conferred greater vulnerability in me to have a more severe course of infective disease when I became so ill in 2003. From extensive research, it appears that MCAS can progress over time through a latency of infection in pathogenic reservoirs domiciled in inflammatory microenvironments which can exist on a mild level or a severe level, or anywhere in between, in people who have these disease pathways either currently active or vulnerable to activation within their bodies.
MCAS is being revealed as an interdependent co-morbidity active in many infectious diseases, as well as in many chronic conditions due to a latency of the pathogens. It will occur at widely varying levels of severity in people, and some are born with it while many others may not activate into it until much later in life or not at all. Covid long-haulers who are suffering from this will have a huge degree of variability in terms of how MCAS presents in them, how severe it becomes and how challenging it is to manage. Many, many people with MCAS and other pathogenic co-infections seem to be able to get it under control and manage their lives very successfully. And yet, in others it can be much harder. For all, the hardest part of it can be finding MCAS-knowledgeable doctors and MCAS-appropriate therapeutics.
I wish to be clear here on a very important point. I do not believe that the vast majority of doctors who serve humanity everyday all over the world are to blame in any way whatsoever for the lack of knowledge regarding the emerging mast cell science. A profound failure to pursue the appropriate immunological science regarding the host immune response, which is needed to support the doctors who are trying to care for the sick patients, falls squarely upon the National Institutes of Health (NIH) and the National Institute of Allergy and Infectious Disease (NIAID) within the United States and upon their equivalent national research centers in every country around the world. The community doctors who provide treatment to all of us have been left in the untenable position of trying to treat an ever-increasing population of sick people without the up-to-date and accurate science required to support their efforts. This lack of research and the lack of continuing medical education programs based upon the research is where big changes are needed, and it was for this purpose that the MCAS advocacy event where the videos on talkMCAS.com were filmed. The event was focused on improving access to appropriate clinical care and to shine a light on the need for increased mast cell research.
Please bear in mind that it took me many years to get properly diagnosed and so the impacts of both MCAS and SARS had progressed greatly in me by the time I found a doctor who knew about MCAS, and we only recently realized the potential SARS part of my medical equation; and so, do not consider the advanced nature of my case to be typical. People can get this under management sooner than I was able to, preventing further declines, and that is why I am speaking out. It is vital to understand that left undiagnosed my MCAS raged and with treatment it has improved tremendously. I am still in an uphill battle and I hope to have the energy and the courage to help publicly on these vitally important medical issues. I am but one person living in isolation while undergoing medical treatment and I work on the research book daily. I am committed to doing my part as effectively and responsibly as possible. I am asking all of you who read this to do your part as well.
Please forward the link to www.talkMCAS.com as far and wide as possible. Please work to share this information globally with medical research institutes, hospital administrators, political leaders, doctors and all of healthcare professionals, the media, patient advocacy organizations, Long-Covid patients and their family members who are desperately seeking answers, and all others who may be impacted by MCAS and Covid-19 or are otherwise inclined to help. We are all in this together.
As a person with a neurological diversity and some serious health challenges who is trying to navigate the negative energies which currently abound in our world, I have learned that love has currency. There is value in its exchange. It is so valuable in-fact that it is actually priceless, and yet it is available freely to all who give it away.
Thank you for your time and for your help. Together, we can have victory over both MCAS and Covid-19.
With love and respect to all citizens of this great and complex world,
Your friend,
Diane Kane.
talkMCAS 