Arianne Profile picture
Aug 6, 2021 11 tweets 5 min read Read on X
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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More from @ravensspirit68

Apr 7
This is a cry for help!
Not because I’m considering suicide.

This is a cry for help for millions in pain. It’s a cry for those who are taking their own lives to end the agony they've been told that they  just need to learn to accept.

#PainCareCrisis Image
2-It’s a rallying cry for people to start talking about what’s happening, what has been happening for years now, to people with serious illnesses & injuries in this country. Virtually no one is talking about this in the public forum-This is the other side of the ‘opioid crisis’.
3-There are people right now watching the news, rightfully outraged when they see profiling and discrimination, human rights abuses, violations of civil liberties and civil rights.
Read 14 tweets
Mar 29
1-BEER
Imagine: Beer poisoning kills a few thousand.
Gov declares beer to be highly addictive & dangerous. They implement gov database monitoring of sales & restricting access to beer, you are monitored through your DL. DEA put restrictions on sales & commercial production...
2-There is evidence that deaths are not the beer from the store that's killing most people, although alcohol related deaths do include store bought beer. Some studies say deaths are from a new strong smuggled beer, and beer being made in garages.
3-Since it's difficult to discern which beer is killing people, the government lumps all beer under the 'highly addictive and dangerous' label, and declares that in order to save lives, we need to get people to stop drinking beer, and all alcohol for that matter.
Read 11 tweets
Jan 27
The Pain Care Crisis: A Call for Compassionate Policy
The majority of people who rely on RX opiate medicines for chronic pain are being unfairly penalized and harmed due to policies aimed at 'misuse'.
Thread...1/
#PainCareCrisis Image
2-Deadly policies-touted as well-intentioned-have led to unintended consequences across the board, leaving millions of chronic pain patients struggling to access the medications they desperately need. Image
3-Personal responsibility plays a crucial role in in the safe use of medications. Patients should be empowered with informed consent, understanding risks and benefits of treatment options, rather than subjected to restrictive, gatekeeping measures.
Read 6 tweets
Jan 6
1-Thread about the barriers to care for people in pain and what needs to change.
I. Addressing Chilling Effect
End Morphine Milligram Equivalent (MME)
Prescribing must reflect individualized patient need, considering benefits/risks for each patient.
#PainCareCrisis Image
2-Regulation of Prescription Drug Monitoring Programs (PDMPs):
Define clear & limited circumstances under which law enforcement can access PDMP data.
Protect healthcare providers from unjust prosecution based on PDMP data and require warrants for any LE investigation.
3-Rescind CDC Opioid Guidelines: Transfer oversight and guideline development to a specialized body of pain management and chronic pain experts, separate from the CDC and focus solely on medical health issues and pain management.
Read 9 tweets
Dec 27, 2024
Thread: Denying opiate medications to individuals who genuinely need them for pain management can lead to many serious health issues and so much more...
#PainCareCrisis #TheOutlawAdvocate Image
2-Increased Pain and Suffering:
The most immediate effect is an increase in pain, which can severely degrade the quality of life, making daily activities unbearable or impossible.
3-Mental Health Deterioration:
Chronic pain can significantly contribute to or exacerbate conditions like depression, anxiety, and suicidal ideation. The psychological toll of unrelieved pain can be profound.
Read 12 tweets
Nov 17, 2024
Kolodny laid out a detailed plan in how to reduce opioid Rxing in a meeting in NY, before guideline was even published.
@jmkillingnyc has so much information on how insidious this anti-opioid agenda was from inception in early/mid 2000s and even earlier I believe.
#PainCareCrisis
2-In order to fight back against draconian prescribing protocols, we need to understand how we got here & what's preventing change.
Changes in Standard of Care requires MDs to stay withing the bounds of restrictions.
Law enforcement in medicine has created a chilling effect.
3-With changes re: opioid Standard of Care, if MDs stray, Medical Boards can target them, DEA can charge them, jailing at worse, destroying their reputation and financial standing at the very least. Pts claiming harm by opioids have increased ability to sue for malpractice.
Read 8 tweets

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