Arianne Profile picture
Old soul, creating, hoping, learning. ME/cfs C-spine injury Chronic pain Adenomyosis survivor Married Underestimate me, that'll be fun.🌸💞🌸

Aug 6, 2021, 11 tweets

1-I just want to say that I called our Public Health Dept weeks ago for info on pts w/severe #MyalgicEncephalomyelitis getting vaccinated.
Phone call was made per CDC, FDA, & NIH recommendation, as the respective GOV agencies told me they don't have data to give me instruction.😔

2-Have to wonder who is giving our local jurisdictions instruction if the agencies they turn to say they don't have the data. But I digress...
They did not have answers to my questions but said they'd look into it. I never received a call back from the County Public Health Dept.

3-Also expressed concern during the phone call about how we're relying on self reporting regarding side effects of vaccines, which is beyond problematic when trying to collect accurate data for science, so data being collected is accurate and people can make informed consent. 🤔

4-Someone I love developed severe lymphadenopathy after the second shot. Also pretty tuned into the M.E. community and people are self reporting their experiences, many of which indicate that vaccinations are leaving many M.E. patients worse off. Not all, but many. 😔😷

5-I've also heard we're relying on self reporting for breakthrough cases. That to me is shoddy 'science'.
There is a lot we don't know and seems to me that even the experts don't know, but won't really admit how much they don't know, at least publicly. 🧐Garbage in, garbage out.

6-Before people lecture me on how it would be far worse to get Covid, that can't be determined as fact. MOST who get the virus have mild to no sx & aren't hospitalized. There's no way to determine who will or won't get very sick & die vs people who will only get mild symptoms.

7-That being said, we do know there are factors that might put one more 'at risk' for getting very ill and/or dying. All of this of course can change as multiple variants enter from stage left.

8-I already have a serious post viral illness that has progressed to me being pretty much housebound. M.E. symptoms are much like symptoms that #LongCovid patients are now facing. I'm also now forced to contend with a new diagnosis of another chronic illness. 😷😪

9-Side effects of the vaccine could exacerbate my conditions and take me from functional to non functional. For my part, I continue to try not to get sick at all.

I mask and double mask when in public.

9-While I'm not anti-vax, I am hesitant, and with good reason. I have done TONS of research. I've spoken with my primary care doctor regarding my concerns and have made an informed choice FOR ME, at least as informed as is humanly possible at this point. 😔

10-I've agonized over my decision not to be vaccinated, and for all you healthy people out there and to GOV please note: It's a terrifying time, especially for those of us already existing w/serious health issues.
We and our concerns should not be a footnote.
#MillionsMissing.

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