1- I remember way back when advocacy for pain pts started merging with the addiction community's advocacy.
Pushed back on ADX community's mantra of opioid 'over prescribing' & stated that drugs don't cause ADX.
Maia Szalavitz chastised me, told me to basically stay in my lane.
2- In fact, many in the 'upper echelon' of advocacy still embrace the #PainParole status quo & the 'over prescribing' narrative.
Usually if one pushes back, we're blocked or put on the blacklist of CPPs, and now there's even a blacklist for 'rogue' addiction advocates. 🤔🤫
3-You see I was here advocating since the time when the first seeds were being planted on Twitter re: our E-advocacy. #ShareOurPain was a small ragtag group of CPPs who banned together for the cause. This was before there even was an 'upper echelon'.
4-I was even one of the few who suggested that allying with the addiction community might be to our advantage in achieving needed change. As the false narrative around addiction HAD to be confronted if we were to make any progress. Many CPPs hated on me for even suggesting it.
5-Didn't seem to matter to many that not only had I suffered with #Chronicpain for decades, I had a career in the medical field, & my daughter & loved ones struggled w/alcohol & drug addiction.
I came to the table w/a lot of knowledge, lived experience, perspective, & insight.
6-I remember introducing several people in the pain community on Twitter & promoting their respective work. Many in our little group were hesitant, I guess presciently, as those same people are now rubbing elbows with the upper echelon, looking down on the rest of us. 😔
7-Not sure of my role in advocacy anymore I've tried so hard to fight for EVERYONE. To put a stop to harmful policies, narratives, practices. To unite CPPs and even help the ADX community as it's the #DRUGWAR that's killing us both; despite different tx needs.
8-I feel lost, unsupported by those sitting at the 'adult table', admonished that truth is not allowed there.
Feeling broken beyond healing after the loss of my daughter, w/little hope remaining when it's obvious CDC/PROPs agenda is killing people yet few changes
are coming
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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.
1-#ChronicPain patients knew that the opioid 'guideline' re: prescribing practices was not law.
But as intended, PROP's 'guideline' shaped the Standard of Care re: #opioid prescribing practices so it might as well have been law.
Why?
Tort law.
Let's try and break it down.
2-Once PROP's ‘opioid guideline’ was published through CDC, prescribing practices started to formally change nationally and altered how doctors were to treat pain; altering the Standard of Care. This was crafted around an ‘opioids are dangerous drugs' narrative. #ChronicPain
3-The recommendations to instate a maximum morphine milligram equivalent altered things further in the practice of treating pain. It changed pain treatment recommendations for acute pain, post surgical pain control, and most of all, the way #ChronicPain was treated.
Let's break down #TheGreatOpioidLie.
1-"Over-prescribing was the cause of the opioid crisis."
First according to the Medical Board of CA, there is no legal definition of 'overprescribing'.
Second, it is a THEORY that the mandate to treat pain led to the overdose crisis
cont...
2-The Gov's own stats disprove the access theory. As access to RX meds declines we continued to see a steady increase in drug deaths.
Seems something else might have been a the heart of why we saw a rise in ODs and continue to see record numbers of PEOPLE dying. #ChornicPain
3-Could it have been the collective trauma we all experienced after 9/11, then we sent our loved ones off to war, and they were being sent home with broken bodies, then the financial collapse, outsourcing of manufacturing jobs, people losing homes, retirement, investment accts...
1-How is the #WarOnPainPatients being waged, let us count the ways...
You're probably seeing an MD because OTCs aren't working.
You're told ibuprophen works well for pain & offered an RX for ibuphropen.
You decline as you've been taking it OTC for months.
You just refused meds.
2-If you counter any aspects of #TheGreatOpioidLie, citing facts vs fiction...
It's can be charted that you're emotional-hostile-agitated.
'Drug seeking' behaviors.
*Women are often labeled hostile just for being in assertive when dealing with people in positions of power. 😔
3-If you have a #chronicillness that includes fatigue & pain syptoms and you taking an opioid...
It's the opioid making you somnolent, tired, depressed, not your illness or pain.
And this can be used as an excuse for an MD to taper or discontinue opioids or even benzos.