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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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.
Thread-There's probably more to unpack here than X or my current flare will allow me to elaborate on.
From deflection to gaslighting and than on to dismissal of anything we #chronicpatients or even professionals say.
#ChronicPain #PainCareCrisis @DEAHQ federalregister.gov/documents/2024…
2-Section 306 of the Controlled Substances Act (CSA) (21 U.S.C. 826) requires the Attorney General to establish aggregate production quotas for each basic class of controlled substance in schedule I and II...
Maybe next letter writing campaign to the U.S. A.G?
#PainCareCrisis
3-DEA received 4,699 comments from people with chronic pain, patients (ADHD), pain advocacy associations, U.S. professional associations, U.S. nurses, and far more.
1-The most idiotic & insulting things those with #ChronicPain face is the implication or direct accusation that we 'just want opiates'.
The truth is, we ARE 'seeking' the meds from MDs we require for pain relief but usually ONLY AFTER trying almost everything else already.
2-When one is ill or injured they usually try the old standby's first vs before going to a doctor.
Ice, heat, OTC meds like Ibuprophen or Tylenol-Even both. Some try herbal supplements, massage, gentle exercise, diet, even acupuncture before seeking help from an MD.
#ChronicPain
3-Those w/#chronicillness have usually done their research & avoid medical offices/ER like the plague if at all possible.
From cost to gaslighting, we'd rather deal with our issues at home. But facts are, we require MDs help as THEY are the only ones who can RX meds we need.
1-Objective: SAVE LIVES.
Recently I said a #SafeSupply is the pinnacle of saving lives but I realized it's not; it's the FOUNDATION, upon which we build policies to actually save lives.
I'm going to refer to this moving forward as the GOLD STANDARD in reducing #DeathsOfDespair.
2-Drugs would be legalized. A safe, known potency supply of substances created by existing drug manufacturers. It would include supply for RX'd medicines as well as for OTC public, adult, sales and consumption. Similar to how alcohol is sold & consumed now. #SafeSupply
3-The BILLIONS UPON BILLIONS being funneled into the #DrugWar and the 'opioid crisis' would be put into improving efficacy and access to AFFORDABLE HEALTH CARE, including mental and dental health, while bridging gaps in regard to other #socialdeterminants of health.