The big discussion focus when I get together with friends these days is the COVID-19 vaccine. As I wasn’t feeling well last night, instead of our nightly walk, we just met outside my apartment building and sat on benches by the water. I could have canceled but I’d just been to the doctor earlier in the day and had news.
We’d already spent a lot of time talking about the vaccine, and the things we were not entirely comfortable about with regards to taking it. For me, the speed with which they developed it and why there were so many versions were at the top of my list.
Speeding through developing a vaccine for a potentially deadly virus made me worry that all the testing that should have been done wasn’t done or that they took shortcuts. I also didn’t know why there were so many versions instead of having the biggest experts in the field joining forces to create a single, better vaccine. It just seemed to me when competition got into an area of preventative medicine that could result in millions or billions of dollars for a company, that again there might be things that are done or claimed that aren’t entirely as they should be.
One of my friends had heard about potential side effects that were fairly serious. Another one mentioned she’d heard that they’d extended the time you had to wait in the office after receiving the vaccine from 15 minutes to one hour. That also seemed to suggest concern over possible side effects that could take an hour to develop.
Overall, I was feeling there was too much they didn’t know about the vaccine to make it as safe as it should be in order to start distributing it. I also wasn’t sure what criteria to use to evaluate the different versions to decide which one to take if given a choice. I did know that I wanted to wait a while to see what kind of side effects were developing and how serious they were before considering it. Of course, it would be months before it gets to general population so I figured I had a while to worry about it.
Now, it turns out there’s no need to be concerned with any of this. As of now, they won’t give the vaccine to anyone who has had the virus. Though this issue is a bit more complex than that. The main reason that they won’t give those previously infected with the virus the vaccine is because this group was ruled out of the studies that were done to establish the effectiveness and safety of the vaccines. It’s the same reason children won’t be getting the shots.
Most leading trials including all of Moderna’s and the Sanofi and GlaxoSmithKline partnership excluded anyone who tested positive for the coronavirus in diagnostic or antibody test. Novavax, didn’t accept anyone who had either been diagnosed or had ever experienced any known exposure to the virus. This means that experts don’t know at this time how the vaccines might affect people who had the virus or if it would be safe for us to take it.
That raised a big issue since there were a large number of individuals who had the virus but were unaware of it because they developed no symptoms and had never been tested. If the vaccine turned out to be a problem for those who had contracted the virus then there could be a lot of people who ended up with reactions. But we had no way of predicting what those reactions might be.
There have been some indication that a few of the companies making the vaccines may have data on small samples of people that were included in later clinical trial phases who had fully recovered from the virus. It is unclear whether this would be sufficient to determine both safety and efficacy of these vaccines for people who have already had the virus.
There is no way of knowing how long the immune response lasts for those who have contracted the virus but research indicates it is not very long. In one experiment results indicated the immune reaction lasted around 3 months, in another study it appeared to be about 5 months while in another memory cells lasted long enough that it was hypothesized immunity could last for 8 months.
It also has been shown that some people who have recovered don’t have the antibodies when tested. This means more extensive research needs to be done now, to determine the effects on those who have had the virus and how to make sure it’s safe for them. While they may not know how long natural immunity lasts, they do know it isn’t forever, so those who have already recovered from the virus will need a vaccine eventually.
Reports further indicate that there is a group of people who have gotten the infection twice which genetic testing confirmed wasn’t the same infection flaring back up. The second time they contracted the virus, they became sicker. This suggests that the second strain was possibly a stronger version of the virus or that the immune reaction from the first infection made the second one worse. But experts have hypothesized that a previous infection may not provide any protection against a second infection involving a different strain and may actually make it worse.
Then there were those of us who were nicknamed long-haulers. We’re the step-children of the COVID-19 family. Long haulers often had symptoms for months despite testing negative for active virus and antibodies. For those of us who were long haulers, the issue regarding vaccination was more serious. This is because experts had identified an auto-immune link that they were concerned about.
There were experts who believed that in long haulers the virus was not dormant but that it was actually gone. Despite this, the immune system gets stuck in an overactive state that persists. It is said to resemble the beginning stages of auto-immune conditions where continuous inflammation leads to the body attacking itself.
Researchers determined that long haulers didn’t just resemble people with auto-immune conditions in the way their bodies reacted,. They actually produced antibodies found in auto-immune conditions. Auto-antibodies that were produced by the immune system targeted the body’s own proteins. In Covid-19 long haul syndrome, auto-antibodies associated with blood-flow issues are associated with difficulty regulating heart rate and blood pressure, migraines, and shortness of breath among other symptoms, have been found to be quite common. This is even the case when there were no Covid-19 were antibodies found.
For me, it has been hard for my doctor to determine whether the auto-antibodies they found were related to the Covid-19 infection I’d had months ago, or to the auto-immune condition I have which they can’t diagnose. Either way I had no COVID-19 antibodies, only auto-antibodies that were attacking my system much like you see in Lupus or Rheumatoid Arthritis (the two conditions my existing pattern of lab results seem to most closely resemble).
I’ve been suffering for years with this other undiagnosed and hence untreated auto-immune condition which already involves chronic pain and fatigue. That is evidently not unusual in long-haulers as existing auto-immune conditions are one of the main risk factors for becoming a long hauler. Added to that I also have fibromyalgia which means more pain in my joints and muscles, muscle weakness and brain fog. It is now 6 months since I tested negative for the virus and four months since they determined I don’t have the antibodies despite having symptoms which continue through today. They know very little about this syndrome.
The one thing they do know about long haulers however, is that, at least for now, they won’t be vaccinating us. Given the concerns about the condition possibly being auto-immune syndrome, and the vaccine possibly also contributing to additional autoimmune problems, they cannot in good conscience do the kind of research needed through human testing with long haulers to determine the safety of vaccinating us.
This is frightening for a number of reasons. First, without antibodies to the virus, we have no natural protection without a vaccine. Getting it a second time could also add to whatever auto-immune response is currently ongoing for long haulers. Second, some people have gotten it twice and the second time they got sicker than before. Third, there appear to be multiple mutated strains that have been identified, some from animals such as the mink in Denmark, now the U.S. as well as the new strain identified in the U.K. which is reportedly 70 percent more contagious than any of the other strains that have been identified. There is no evidence any of the current vaccines provide protection from any of the most recent strains including the one in the U.K.
So, at least for the foreseeable future, we will remain behind closed doors and covered by masks and pull-down shields during our infrequent forays into the world for groceries or medication. We will not be joining the workforce in person since there is a growing consensus that most employers will require vaccines to enter the workplace. We will not be attending any parties, even those that are small.
Just because you may have been vaccinated also doesn’t mean we will be comfortable around you since you may not be as careful about maintaining precautions as we will still need to be. Chronic pain, fatigue, anxiety, sleeplessness, migraines and heart palpitations do not encourage us to be around anyone else, given the lack of knowledge of what could contribute to further auto-immune dysfunction. Considering the suffering this condition causes combined with the autoimmune difficulties many of us already suffer from, they will have to go a long way to convince any of us that taking the vaccine is worth the risk of worsening these symptoms perhaps permanently. We are still hopeful that the symptoms will remit someday even so many months later and we aren’t willing to risk that possibility.
But please don’t forget us. While you (or we) may rule us out in terms of receiving a vaccination, please do what you can to find treatment options for our symptoms and ideally something to reverse the condition. This type of chronic pain and fatigue takes a terrible toll on a person’s mood and ability to function normally on a day-to-day basis and many of us already have something auto-immune related to contend with even in the absence of Post COVID-19 symptoms.
We just want to be able to rejoin society when this virus is under control and enjoy living our lives like everyone else. I don’t think this is too much to ask.
For those of you who are long haulers there are some wonderful support groups that include people who are working together to help each other feel better and also to create accounts of the condition in the hopes of helping researchers gain a direction for investigations.
There are several on Facebook, all of which are very open to new members.
- Long Haul COVID-19 Success and Advice From the site description: “This group is a place of POSITIVITY for when you need a pick-me-up or some inspiration”. It is a wonderfully positive and supportive group.
- COVID-19 Long Haulers Support From the site description: “Nurses group where you can ask #Coronavirus questions and find #COVID19Updates, mental health support, PPE access, resources and healthcare worker discussions.”
- COVID Long Haulers Canada — This group has a lot of resources regarding issues related to legal difficulties such as employment without being given a vaccine and other law and guidelines applicable to Canadian citizens.
- COVID-19 Long Haulers Resources Only — From the site description: “This group was created to share helpful resources for those wanting advice on how to help with long haul COVID symptoms.”
- COVID Long Haulers Support Group — From the site description: “This group is for individuals who are experiencing long term symptoms/effects of the Covid19 Virus — with a focus on those experiencing “shortness of breath”. “
- COVID-19 Long Hauler Holistic Healing Chat Group — From the site description: “This group is for anyone who had COVID-19 and, believes in alternative ways to heal”
- COVID Joint/Muscle Pain Long Haulers — From the site description: “This is a private group for those who have struggled with POST COVID long haul joint/muscle pain. This is an attempt to narrow down the scope of symptoms so as to aid in the search for people w like symptoms.”
I only have personal knowledge of the first two groups listed which are wonderful. There are also a lot of other groups you can find online. I’ve just signed up for the Body Politic COVID-19 Support Group which is hosted on Slack where the members have formed a community that the really seem to love and find useful. You don’t have to suffer through this alone even under the conditions of the pandemic.
If you have any information on other groups or resources for long haulers please include them in the comments below.
Natalie Frank has a Ph.D. in Clinical Psychology. She specializes in Pediatrics and Behavioral Medicine. Her collection of poetry, Disguised I Breathe, In Love I Hold, can be found here on Amazon.
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You can find links to all of the articles, stories, fiction and poetry I publish on Medium here. Thank you for reading.