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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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
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.
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.
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
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.
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
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.
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.
Thread...1-Prescribing practices should never have gotten to the point where some of the most vulnerable people in our society-the sick/injured/elderly-are left in agony, driven to the point of desperation with little to no hope in sight of things changing.
#PainCareCrisis
2-People with serious illnesses and injuries have been being told every year for over a decade to 'hold on', that change is coming. I know from having boots on the ground in the chronic illness community that for most, things have only gotten worse.
#PainCareCrisis
3-Right after CDC/PROP's unrolling of the 'opioid guideline', I and others watched medical professionals convene boards to change the Standard of Care in managing pain in EVERY aspect of medical care, with an anti-opioid, 'dangerous drug', directive driving those changes.
1-What I've noticed over 14 years of advocating for people in pain is when you make it clear you're not anti-opioid, MDs, legislators, media, and GOV officials become rude then dismiss you. If you still don't go away, they'll then attack your character/ignore you.
#PainCareCrisis
2-Even when presenting facts-like the extremely low incidence of 'addiction by prescription'.
Or if we explain the safety/efficacy of opiate medicines when taken as prescribed, or the real dangers of leaving someone without effective pain control, including death- we are ignored.
3-More often than not, a pain patient advocating for themselves is automatically judged as ignorant and having no credibility. We are usually labeled as people 'just wanting THOSE drugs', called junkies or pharma shills, or bots.