Arianne Profile picture
Mar 11 8 tweets 4 min read
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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More from @ravensspirit68

Feb 17
I commented on the CDC's rewrite.
For whatever that's worth.
I'm exhausted, angry, & now grieving a loss that no parent should ever have to face.
I've had my health & ability to live stolen and lost far too many people I love and care about to this #OpioidInsanity.
Thread...👇🏼
2- My comment?
You have no intention of ending this atrocity. You have had people in the pain community chasing their tails for years while asking for our input and 'comments'.
#Chronicpain
3-We've explained over and over that we are suffering and dying out here in the real world. That MDs tell us to our faces that they are AFRAID of the DEA, and that we are not worth risking their licenses over.
#Chronicpain
Read 10 tweets
Feb 1
1-Tx of pain & the role of opiate class medicines has gone from pain being inadequately treated across the board to abject insanity.
This was done in an orchestrated but convoluted way, taking pain and making it a 'bio-psycho-social' issue tied inexorably with addiction.
2-For those unfamiliar with CHOIR, it's one of Stanford's projects. It was promoted with the National Pain Strategy (when it was a thing) alongside PROPs opioid 'guideline' as a model for technology driven optimization of pain care through research and data mining.
3-The screenshot above in tweet #2 is from this link. iprcc.nih.gov/sites/default/…
Read 15 tweets
Jan 27
I hear a public comment period is coming next week on CDC opioid 'guideline' revisions. This link shows who was involved in the 'opioid' revision workgroup, and what topics of concern were discussed. 😔
#GetLawEnforcementOutofHealthcare
#ChronicPain
cdc.gov/injury/pdfs/bs…
2-Listed in this thread the people who are influencing 'guidelines' for chronic pain treatment and pain treatment in general.
Dr. Wilson M. Compton serves as the Deputy Director of the National Institute on Drug Abuse.
nida.nih.gov/about-nida/org…
3-Anne Burns, BSPharm Vice President, Professional Affairs, at the American Pharmacists Association
Responsible for the Association’s strategic initiatives focused on advancing pharmacists’ patient care services in team-based care delivery models,
ahip.org/speaker/anne-l…
Read 23 tweets
Jan 26
Petition to Congress.
Public Comments (15,444)
This comment was posted 3 years ago.
Things have only gotten worse.
#RxOpioidsSaveLives #Veterans #GetLawEnforcementOutofHealthcare Image
Petition to Congress.
Public Comments (15,444)-
This comment was posted 3 years ago.
Things have only gotten worse.
#RxOpioidsSaveLives #GetLawEnforcementOutofHealthcare Image
Petition to Congress.
Public Comments (15,444)-circa 2019.
Things have only gotten worse.
#RxOpioidsSaveLives #GetLawEnforcementOutofHealthcare Image
Read 4 tweets
Jan 26
And I want to RT this to stand on it's own merit.
Just in case it gets buried in the thread.
#ChronicPain #Addiction #DrugUseForGrownUps
#Overdose #Opioids
2-A patients need for opiate pain meds should not be determined on addiction treatment issues. Nor should it necessitate recreational drug advocacy. Those are NOT our fights.
People in pain have been deemed acceptable collateral damage in an ongoing, doomed to fail drug war.
3-And here we are. Tens of millions of people in pain told that we should be helping get access to #MAT for thoes w/addiction issues, and help legalize recreational drugs, all while we watch our frends in the pain community dying due to lack of needed legal/safe MEDICINES.
Read 4 tweets
Jan 26
This was the "Pain Patients Bill of Rights" in 1997.
Let me repeat that date.
1997.
MDs already had the right to REFUSE pain meds-
LE to go after illegal use.
The whole 'everyone getting opioids like candy' is & was BS.
#GetLawEnforcementOutofHealthcare
search-california-law.com/research/ca/HS…
2-This is the business code info referenced in the above linked 'Patients Bill of Rights'-Cal. Health & Safety Code §124960.
Yet today, few can get proper pain care in CA to literally save their lives.
#StopPainParole #GetLawEnforcementOutofHealthcare
leginfo.legislature.ca.gov/faces/codes_di….
3-Most #chronicpain pts are told to just 'follow the rules' and/or agree to go to 'pain management' clinics to get care, yet Pain Clinics are targeted by LE/DEA & shuttered.
Patients abandoned.
'No opioid Interventional Medicine' has become standard of tx.
visaliatimesdelta.com/story/news/202…
Read 5 tweets

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