President’s Column

Written on 9/21/20

I’ve been on the planet for going on seven decades. I’ve experienced a lot of life. I’ve never witnessed anything close to the times we are living in today. We are trying to survive during a global pandemic. The world economy has been severely impacted. People’s lives have been threatened with job losses, the loss of health care insurance, widespread food insecurity, and the loss of housing. Providing for the education and care of our children has become a complicated proposition trying to balance safety and public health with the needs to provide all of the critical services that are offered by schools in addition to reading, writing, and arithmetic. Our seniors have been put at serious risk from the virus, as almost half of the deaths in the United States have taken place in nursing homes. Our medical community and our first responders have also suffered disproportionate risk of infection. There is civil and social unrest brought about by inequities in our criminal justice system. These societal issues run deep in our culture and institutions. Our electoral politics have become divisive battlegrounds that are magnified by the toxicity that runs rampant in our social media. Civil discourse has become difficult and negotiation and compromise have taken a back seat to tribalism and trench warfare. And our planet is literally burning.

It is a lot and what I’ve noted above only scratches the surface of the challenges we face today. In thinking about this entire monumental mayhem, my shorthand nomenclature is The COVID. We are living in the time of The COVID. As an older person, The COVID will be a short and miserable memory. For my children and my grandchildren, these times are going to define their lives.

Can you imagine what changes are coming our way from the experiences we are currently having with The COVID?  Some of these changes are going to be unimaginably profound.

And then the news started pouring out that a woman in England might have been diagnosed with transverse myelitis after receiving the COVID vaccine in the Oxford/Astra Zeneca trial. This news caused another whole layer of mayhem in our worlds. It is a shock to hear anyone from outside of our community talk about any of these disorders. It is quite another thing to start hearing stories about them in the international news. There is something totally cosmic and terrifying to hear Nora O’Donnell say the words transverse myelitis. I could write a short book about this event and all the issues that surround transverse myelitis as an adverse reaction to a vaccination, but I’m going to resist that impulse. I published many of my ideas on this topic in my book about the patient experience with transverse myelitis. I would encourage you to pick up a copy. You can purchase everything I know about transverse myelitis for $18 on Amazon. If you have a Kindle, you can acquire everything I know for about $2.50.

What I will say about this event is that we’re monitoring the situation closely. We are relying on our medical experts to guide our thinking, and we’re publishing what we know to our community as quickly as we know it. I urge you to check our website often and when you receive an email from us, I implore you to open it. Reading it would also be a very good idea. As it stands today, the situation is very complicated. The trial is being put back on track in the UK and it remains on hold in the US. There is a great deal of confusion surrounding what we know and what we don’t know about the events. The diagnosis of transverse myelitis has not yet been definitively confirmed and the methods anyone is going to apply to decide whether the vaccination could have caused an autoimmune inflammatory attack on the spinal cord is going to be a fascinating proposition.

Here’s what I know, for what that is worth. We don’t know the cause of transverse myelitis. We believe it is likely autoimmune. We don’t know the disease process. From experience, we know that some people have this inflammatory attack after having experienced a viral, bacterial, or fungal infection. There are theories about molecular mimicry that attempt to explain how this could happen. We also know that immune systems have become a bit more whacked out. Autoimmunity is on the rise as are other disorders associated with inflammation. There are theories about why this is happening, including all the human-made chemicals that have become endemic on our planet, i.e., our immune systems are being bombarded with foreign substances and are on a constant state of alert and activity. In rare cases, vaccinations precede this inflammatory attack in the spinal cord. What we observe is the temporal relationship. First the infection or vaccination, and then the attack. The relationship is temporal, but because we don’t know the disease process, we can’t determine that there is cause and effect. i.e., we can’t say that a viral infection causes TM. And there isn’t any great understanding of what time period makes these connections even plausible. My perspective on this, again for what that is worth, is that events that are outside of 30 days begin to lose plausibility. But, remember, you are hearing this from a cultural anthropologist who hasn’t spent much time memorizing body parts. Also, causality is a huge debate in epidemiology in general. There are many factors that go into determining causality – it is an incredibly complex concept.

Here’s also what I know. People who have had their lives turned on their heads are uncomfortable with the notion that everything about this horrible experience is a mystery. People want to know. Some people need to know. When science doesn’t offer answers, there’s always room for magic. Now, that conclusion is anthropological. And that is the way it works. Pauline knew what happened to her. She put all the pieces of the puzzle together for herself and constructed her own reality about what happened to her. This was Pauline’s transverse myelitis origin myth. I know many other people do the same thing. They figure out for themselves what happened to them and why. If you think you got transverse myelitis as punishment for being a bad person, I implore you to read When Bad Things Happen to Good People by Rabbi Harold Kushner. And for the record, you are a good person.

Only time will tell whether there’s a relationship between what people figure out for themselves and any scientific, medical reality. The research can’t happen quickly enough.

I had great compassion for Pauline and I have the same compassion for all of you who have had this horrible experience and then find answers sorely lacking. And that is part of what drives my more than 25 years of work on behalf of this community. Pauline deserved scientific answers because with those answers begins the process of finding solutions. All of you deserve the same.

And so, we continue the work.

The international headquarters of the Siegel Rare Neuroimmune Association is my home. If you google our Association, you get a photograph of our headquarters and you can admire Pauline’s purple garage door. Google says that we’re open 24 hours a day, seven days a week, and it offers you directions to get here. Please don’t come over. The only one living here is me. We didn’t have to send our staff, leadership, and volunteers home to work when The COVID happened. We’ve been a virtual organization since our inception. We’ve had all the tools and strategies in place to accomplish our goals. That has been a blessing.

We have had to move some of our activities into the virtual world. That has been difficult and complicated, but the result has been that we’ve found creative ways to provide the same services and programs to our members that are central to our mission. Rebecca worked so hard to offer a camp weekend experience for families after the Center for Courageous Kids had to cancel their summer program. It was all hands on deck to provide our Rare Neuroimmune Disorders Symposium with our partners at the University of Utah. We had excellent speakers from across the country. Roberta, GG, Krissy, Jeremy, Rebecca, Debbie, and Chitra put in countless hours to plan, prepare, and conduct the all-day education program.

Jeremy has been offering virtual support group meetings for our community from all over the world. He has also been working with our volunteers to provide virtual awareness and fundraising events. He’s been remarkably creative in keeping our community engaged and fostering connections that are so important in a rare disease organization.

We continue to provide the same publications we’ve always offered, only now all our magazines and our annual report are being disseminated online. We are conserving every dollar. As our economy has been so severely impacted, and as our members have experienced so much economic hardship and uncertainty, our financial support has also significantly declined.

Our blogs and podcasts are going out regularly, providing important educational information, as well as personal stories that inspire all of us with the unique experiences people share from living with these difficult disorders.

We are grateful that during all this chaos we’ve been able to remain functioning to do this important work on behalf of all of you. The advocacy for research, the training of scientists and clinicians, the education of our community and medical professionals, and our support network goes on without interruption. That is no small feat.

We will continue to provide you with the best information available about how SARS-CoV-2, the virus that causes COVID-19, is impacting our community as well as the best medical advice from our experts about vaccinations when they are available. There is also excellent information on our website about receiving a flu vaccination this fall. Please visit our resource library.

Please get involved in helping us to better understand and help to inform our medical community about your experiences with COVID-19. You can do so by participating in our study. This is the link to enroll. It involves a short (15 minute) survey that is administered over the phone by our staff.

We never offer advice that doesn’t come directly from our medical experts. I implore you to rely on scientists and medical professionals for your information. If you are confused about the information you are receiving, you can always get in touch with us.

Please stay safe. Wear a mask. Wash your hands often. Practice social distancing. Following public health guidance is your best strategy for staying healthy and alive. If you have one of these rare disorders, you have more than enough going on; you don’t need The COVID.

It is the Jewish New Year, Rosh Hashanah. I wish all of you and your families a wonderful new year filled with good health and peace.

Please take care of yourselves and each other.