No, this blog is not being cancelled though it has been a while since I posted. Lately I have favored more direct social media like Instagram. That is until I was labeled as possible misinformation. My offense? Posting a photo of a t shirt.
Neal received this shirt in August when he was given a shot in the Moderna Covid-19 vaccine trials.
We had both signed up for the study at Clinical Trials of Texas (CTT) the moment we heard about their need for thousands of local participants. These are Stage III trials meaning that the vaccine had already passed basic safety testing on a limited basis and was ready for a wider population. A chance to help out in a low risk scenario with a 50-50 shot at getting vaccinated early was our motivation.
We were interviewed about our health and placed in the queue after initial qualification. He was contacted for an appointment in the Moderna trial and I was to await notice of the Pfizer trial. Neal went in right away and got his shot in late August and a second shot a month later.
I thought it would be fun to post the shirt and a little about his experience.
Not so fast. The genius Instagram censors decided to slap me with a label and I deleted the post immediately.
San Antonians stepped up in big numbers so the Pfizer vaccine trial also filled up before I could get an appointment. Last week it was my turn to get the shot and a cool blue t shirt. My trial's sponsor is Johnson & Johnson and the trade name is ENSEMBLE.
According to our initial briefing and the J&J website this vaccine is the best option for worldwide distribution as it can be shipped and stored in a refrigerator at 35-45F or even on ice instead of a specialized deep freeze. ENSEMBLE is the first to test just one dose instead of two which also makes distribution easier in remote areas.
The participant process is straightforward but time consuming. I'd compare it to starting over with a new doctor, they will ask every detail of medical history back to childhood and that takes a while over the phone. Then you review it all over again at an in-person appointment which takes up most of the day. You will have your blood drawn and the nasal swab Covid-19 test. If you qualify after a physical and consult with one of the study doctors you will get either a vaccine or placebo saline shot the day of your appointment.
We downloaded an e-diary app to track any reactions and/or
symptoms experienced after the vaccine. While we are considered
volunteers, participants do receive some compensation for their time via
an e-payment card which is funded based on meeting certain milestones.
All of this is explained in detail during a preliminary briefing and in written documentation which you sign along with consent forms. While the study lasts two years, we were assured that ethics required they reveal whether we had the vaccine or placebo once FDA approval is granted and a viable vaccine is widely available. This will likely occur during the next year.
The staff at CTT is excellent and patient focused. Expect to sit a while in a very cold waiting area which was good for the busy staff but it took me a while to warm up once I got outside on a very warm 89F November day. I was advised to be especially careful the next few weeks because contracting Covid-19 on top of the vaccine could worsen symptoms. Otherwise, the biggest risk factor seemed to be spending most of the day indoors with a group. Masks are required and social distancing is clearly marked on floors and chairs.
I received my dosage on Thursday afternoon. Friday morning I awoke feeling quite tired and somewhat stuffy similar seasonal allergies. We were given an oximeter to keep track of our oxygen levels and pulse so I began to test every half hour or so. I was surprised to note my oxygen level did drop slightly for several hours and I had an elevated temperature for about the same length of time. None of my symptoms met the specified level at which I should call their emergency line so I recorded them in the e-diary which continued to prompt me for input. By Saturday afternoon I felt just fine and still cannot say whether I had the real vaccine or placebo.
This morning, Monday, I received a call from a CTT researcher to review the symptoms I reported over the weekend and check my progress. After consultation with the doctor, she told me to begin reporting just twice a week until my follow-up appointment in January. Neal also experienced an elevated temperature along with a sore arm after his vaccination in August.
A bit more about our experience with vaccines. Neal was quick to volunteer for this study even though he was once intentionally injected with live Swine flu vaccine which he was not allowed to decline as an active duty Air Force officer. He was very ill for several days but did recover well. The same year I believe I had both the Swine flu and the Russian flu within about 6 months though I was not tested. I was very ill for about two weeks and took several weeks more to feel back to normal. For that reason we have both taken the annual flu shot for 42 years in a row. With no ill effects unless you count a sore arm and occasional tiredness the next day. That's nothing compared to being ill with the real flu which is something neither of us choose to experience again. During our years riding crowded Metro trains in Washington DC winters we did contract an occasional virus and possibly a mild bout of flu. We strongly believe that our annual flu shots help prevent flu and/or lessen the symptoms if we do get it.
So why did I decide to blog about this instead of my usual social media post? I thought you might have a few questions and it's way easier to write long responses on a laptop keyboard than my phone. The above paragraph likely would have triggered the censors at Instagram to slap another potential misinformation label on my opinion and personal experience. More importantly, this is where I can say what I think and add my own labels.
I'm impressed that both you and Neal stepped up to participate in the trials, Shirley. I'm sure that the trials included people from my area of the country too but I can't say I was ever aware of any local outreach to solicit volunteers here. I was a little surprised that there was as much bureaucracy associated with the process to qualify as a participant as you described but, upon reflection, it makes sense. I take it that neither you nor Neal were asked to take a second dose of the vaccine/placebo?ReplyDelete
Thank you for participating in the vaccine trials and for telling us about it. Your account is most interesting and informative. Bob and I have also taken the annual flu vaccine for many years which we feel has protected us. We expect to take the Covid-19 vaccine when it is available for us.ReplyDelete
That’s crazy that someone on Instagram (a conspiracy theorist? I can’t think of another reason) flagged your post as misinformation.ReplyDelete
Those previous years of hard work by scientists have paid off in getting a vaccine developed so quickly. My husband is in the medical field and is supposed to get his first shot at the end of this month. For everyone else supply is going to be an issue.
Greetings to and from another vaccine trial member :-) I'm in the Moderna trial out of Austin (at Optimal Research). I've never participated in such a trial before, and it is an interesting process. I have many friends who are extremely skeptical of these vaccine candidates, and I hope my experience helps them overcome any trepidation they have. I also experienced the sore arm with both shots. After the first shot, I came home and fell asleep hard for about 3 hours. After the second shot, I developed a fever (101) and pretty severe body aches for about 24 hours. They had me come in to test for Covid (which came up negative). I was very excited when they called a couple of weeks ago to say that they were filing for Emergency Use Authorization and when granted, they would let us know if we had received the real vaccine or the placebo. I feel like I got the real vaccine, due to my reactions, but I'm looking forward to finding out. I'm impressed with the new technologies used for these vaccines, I've been researching the messenger RNA and there are so many things they believe it can help! Thanks for sharing your experience, and I hope you don't mind me sharing mine. I'm proud that San Antonio and Austin had such success in finding trial participants, especially with the sad politicization of the virus. I'm praying that all of these vaccines work and save many lives, as well as helping us get back to normal.ReplyDelete
I enjoyed reading about your experiences with the Moderna trial. It is an exciting new time. When we lived in Boston 20 years ago this type of genetic research was new and the company I worked for was researching the most amazing uses for all the new data generated by the human genome project. It's fun to see this capability turn to reality.Delete
Good for both of you for helping as part of the vaccine trials. I for one am grateful to you both.ReplyDelete
That is unsettling what happened to you on Instagram. I chose to self-eject from all Facebook owned/controlled social media months ago. After a few pangs early on (but Mom, all the cool kids are there!) I find that I don't miss it at all.
Sincere thanks to you and Neal - you both are literally helping to save all our lives in every sense of the words. Heroes for sure!
IG has been slapping that COVID thing up if you so much mention something like "Ah, life has been hard with COVID but we're over here making life work"---could be something so banal but you so much utter covid and bam that sticker comes up. Even something I posted on a secondary account that I didn't think mentioned covid or even hint towards it got it. Their algorithms sense anything apparently. I wouldn't worry too much about it.ReplyDelete
Exciting you got to try the trial, though! My husband signed up but has yet to be contacted so I suspect he won't be called. We will bide our time until summer or fall, whenever they get to us bottom tier folks!
Shirkey, It was so very interesting to hear of your experience in a vaccine trial. Thank you for doing this post about it.ReplyDelete
I read J&J's vaccine may be the Covid-19 vaccine tortoise (as in the tortoise and the hare fable) because they are using an older, proven technology and have deep experience in vaccines. At this point, whatever works and is safe is going to be needed. 7 billion+ arms to inject.
Sometimes it's good to be last. I do particularly like the idea of participating in a test that might help so many.Delete
That misinformation flagging is automated (= that T shirt looks like ...), unless someone actually complained?ReplyDelete
My husband has been thru years of clinical trial for (immune suppressing) rheumatoid arthritis drugs. So perhaps his rheumatologist will put him at the front of the queue once we have stocks of vaccine?
Thank you Shirley, both for participating and sharing your experience.ReplyDelete
Thank you both for volunteering, even if you were slightly compensated. Sorry about the Instagram situation. I guess there are good reasons to maintain various social media options for different reasons. I will get the vaccine when I can--probably with the last group. My dad will get it very soon, since he lives in a senior living facility. My husband will be next--underlying condition and essential worker. Thanks for the info.ReplyDelete
Thanks for sharing this-- it was super interesting to hear a behind the scenes account from a trial participant! I follow a bunch of infectious disease researchers on IG and they have been so incredibly educational these last few months. I wish I'd looked into volunteering for vaccine trials, but it seems to be too late now. It's been such a frustrating year, being hard of hearing, with people ignoring the notebook & pen I hand them in favor of pulling down the mask without stepping back so I can lipread. I cannot wait until I can get a vaccine and stop stressing out every time I have to interact with someone I don't know.ReplyDelete