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

Jan 3
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.
Read 15 tweets
Dec 13, 2023
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.
Read 5 tweets
Jun 12, 2023
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. Image
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 Image
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. Image
Read 7 tweets
May 26, 2023
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. Image
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 Image
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. Image
Read 10 tweets
Mar 24, 2023
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... Image
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... Image
Read 11 tweets
Mar 23, 2023
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.
Read 7 tweets

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