This blog is a way of sharing the information and resources that have helped me to recover my son Roo from an Autism Spectrum Disorder. What I have learned is to view our symptoms as the results of underlying biological cause, which can be identified and healed. I say "our symptoms" because I also have a neuro-immune disorder called Myalgic Encephalomyelitis.

And, of course, I am not a doctor (although I have been known to impersonate one while doing imaginative play with my son)- this is just our story and information that has been helpful or interesting to us. I hope it is helpful and interesting to you!


Wednesday, January 18, 2023

Thoughts on COVID 19

It's not clear whether the pandemic is officially over or not, and this is not helped by the official word of Dr Fauci that it both is and it isn't (Schroedinger's pandemic?), but it does seem that the pandemic is trying to quietly slink away and pretend it never happened while we're all preoccupied with the war in Ukraine.  Either way it feels like a good time to offer some thoughts about the events of the past few years.

I want to say first that I feel for everyone. This pandemic has been profoundly harmful and traumatizing to most of us. I lost people I love to COVID 19. I've lost a lot of people I love for a lot of medical reasons. Nothing I say is meant to attack or judge anyone else's choices and I am asking for that in return. I completely agree that immune compromised or suppressed people have been thrown under the bus, in so many ways, and honestly this was a serious problem before COVID happened. Over the past 8 years of me being critically ill it's abundantly clear that most people not only don't care about a health issue if it won't hurt them directly, but they become like "maskholes" if they are inconvenienced in any way, such as being asked to go without eating peanuts for 2 consecutive hours once in their lifetime. I wish I was exaggerating.

I've been living with the same precautions and isolation of the lockdowns and other aspects of the pandemic for over 8 years and no one cared until it was something that might hurt them too. Before COVID things were just as bad for a lot of people critically ill with many rare diseases for stupid simple reasons with easy fixes that no one cared enough to bother fixing. No or almost no access to necessary care, shortages of necessary meds and med products to the point of killing people (over 200 meds are on shortage or completely unavailable at any given time), potentially deadly misinformation from corporate-driven public health sources,to name a few.

TL:DR- all the actual scientific evidence supports that if you wear an N95 (not K95) or N100 mask/respirator CORRECTLY you are protected whether or not anyone else is wearing a mask. These masks are essentially airtight when worn correctly, which means they have valves in them to let the air out when you exhale (otherwise they are extremely uncomfortable), which was NOT acceptable during the pandemic.  This was not explained well by public health authorities, but there are two reasons to wear masks- to protect yourself or to protect others. Mask requirements during the pandemic have all been intended to protect other people around the wearer, NOT the wearer themselves. This caused problems for people like me who need to wear a mask for self-protection so we usually ended up wearing a surgical mask over our N95s. When a home health nurse comes to my house, they wear a surgical mask because they are protecting me from any pathogens they might be carrying, but the mask doesn't need to protect them because I'm not considered a potential threat to their immune system. This distinction was botched throughout the pandemic causing a lot of confusion over the role of masks.

Long version with tedious details....

At the beginning of the pandemic I WAS TERRIFIED. I had literal panic attacks over any possible exposure and our family (all of us are at higher risk) took some pretty extreme precautions, we even quarantined our mail in the beginning.  I've stayed away from any conversations about this for my own mental health but I'll say a few things here. I am critically ill and profoundly immune compromised, have had bacterial sepsis at least 12 times, any viral illness can cause permanent organ damage or loss of function (and has), I'm on supplemental oxygen, have been on other life support for 6 years, homebound other than dr appointments/therapy/hospital, basically I was "living the pandemic lifestyle" before it was cool. I had the hyperinflammatory response (why people with COVID were in ICU) from a viral bug (before COVID) so mild we weren't even sure my kids had been sick at all, but within about 4-5 hours of first symptom I was rushed to the hospital by speeding ambulance, direct admit into ICU, where my dh was told that if I had any family who wanted to say goodbye they needed to get there in a hurry. Obviously I made it through. This is the tip of the iceberg and I won't bore you with the rest.

I'm saying this to make the point that I've had to learn the details of viral transmission (such as proper use of masks and other protective measures) to stay alive and have had input and guidance from highly qualified specialists (for example my pulmonologist/critical care dr worked in a COVID ICU the first year of the pandemic. I also follow the actual science as if my life depends on it because it does.  Just following public health guidelines, which are simplified at best, is a risk I can't afford. I'm not going to give specifics here but I am going to say that there are actually quite a few meds (and some supplements), used mostly off-label and whose safety profiles are well known, that are often cheap and easy to get, that have been shown to be very effective in preventing and treating COVID 19 in large numbers of high quality scientific studies as well as real-world experiences in many other countries. There is no real controversy about this in the medical field but none of this information was included in public health messaging here in the US, where official messaging and policies were shaped by corporations and individuals with direct financial interests in those messages and policies.

Dr Fauci is the most highly paid federal employee out of all 4 million or so of them, including the president and congress.  He has direct or indirect control of most of the funding for biomedical research in the US and as such can make or break careers on a whim.  There have been concerns regarding his conduct and decision-making for decades including the way he orchestrated the US' response to the AIDS epidemic.  Innumerable lives were lost to AIDS because of Dr Fauci's stubborn insistence to focus only on developing a vaccine and refusal to support research into treatments such as repurposing existing medications to reduce the suffering and extend the life of sick patients.  Doctors in the field were left to experiment and develop protocols on their own, and thank god they did because those protocols are still the best tools we have to treat this disease.  In addition to Dr Fauci's high income the employees of the NIH (the National Institutes of Health) earn a combined 300 million dollars a year from royalties and patents and the source of these payments is more closely guarded then many of our military secrets.  

These monetary ties with industry compromise the integrity of the NIH, the CDC, the FDA, and other involved governmental agencies.  Whether or not there is actual inappropriate influence and corruption, the appearance of impropriety is enough to undermine the credibility of the government's pandemic response.  This was a major contributor to the ineffectiveness of the government's response and the loss of faith that many if not most Americans experienced regarding that response.  The degree of censorship and control of information pretty much destroyed what credibility had survived the clear conflicts of interest.  The unwillingness of the government and most of the media to even acknowledge the long list of concerns raised by the public, the complete disaster that was the CDC's data collection efforts, the iron-fisted management of the rhetoric of public discourse that turned "herd immunity" into "community immunity" to avoid the association with the phrase "herd mentality" all further eroded public trust, but the unquestioned yet dubious "fact checkers" were the proverbial last nail in the Orwellian coffin.  More wealth is at stake now then there has ever been before in human history.  Those who are controlling the public discourse and policy have a long history of willingness to sacrifice large parts of the population for their own financial gain with no concern for the suffering they cause.