Advocates: come and go and SOME ARE JUST RAN OFF

Infighting in the Pain Community Made Me Leave Advocacy








Some people in the chronic pain community seem intent to PUSH OUT some of the most vocal and visible advocates…  Another one just announced her departure a couple of days ago.  I don’t blame Caylee from walking away… I have had some of these narcissistic, self-serving, self-centered … so called advocates – come after me.

Fortunately, I have fairly tough skin and I just am able to ignore their “childish attacks”…  I just figure that I just hit a fairly “large nerve”

Maybe it is just me, but I often notice that there seems to be few, if any, of the chronic pain pts has much – if any – support from their spouse  – if the spouse is still around – what about Brothers/Sisters, kids and/or if parents are still around.  OH…they are not advocating for your pain being under/untreated ?  I am sure that they will attend your funeral and they will all agree that you are ” at peace and not in pain any more ”  and they will get on with their life !

There is suppose to be 100 million chronic pain pts … put how many are actually trying to advocate for themselves and others…  I don’t see the numbers … at least being visible ..anywhere on the internet.

I can’t count the number of strong advocates that have thrown up their hands and walked away over the 10 years that I have had my blog. Some I am sure were basically “chased away” …others got tired of the lack of unity within the community and/or the lack of numbers involved with the community.

If you are part of the community – or just a chronic painer standing on the side line – and you see a major advocate – or any chronic painer – being attacked … you need to stand up for the person being attacked.

As prescribers are abandoning more and more pts… no chronic painer need to stand by idle while watching advocates being chased off…  until one day you find yourself with no advocates but the ones who have been chasing off advocates that they don’t agree with – or – feel  that “their power/authority/dominance” is being threatened and those left in the community will have to go along with whatever processes they think is the way to go…. whether it is the right or wrong path.



12 Responses

  1. With all due respect, in no way to do we try to reduce anyone’s efforts in any way shape or form. We are constantly defamed by the “lead advocates” within this community and if I speak out I am framed as “attacking them” when I have done absolutely nothing. Aside from be falsely accused of things (like being done here). Shasta left the online community due to this behavior. Yet here we are being blamed for doing something we never done….

    I’m disappointed to see this. Our efforts have and always will be for the patients best interest. Instead of following our work people follow the slander….

    • That doesn’t even matter actually. The problem remains it is never OPIATES only.
      At best the message is multi-faceted, complex, and unclear – whether it be opiates AND Kratom, Opiates AND harm reduction, Opiates AND make-up or Opiates AND ‘patient best interestS’… In chess and war there is always only ever one BEST next move.

    • Hmmmm…
      Remember when you told me to ‘go look up’ what you had on the other group? That’s not a response to being ‘framed’ or betrayed, but a common tactic of one ‘caught’… Shasta can leave if she wants to, but it is curious how it could never be why I might leave.
      It doesn’t have to be ‘one group’, but it could be.
      Everyone semi-interested has a favorite, but an interest in OPIATES ONLY might succeed, …it’s called ‘working with a purpose’, a goal.
      The ‘purpose’ must be to recover the opiates, not ‘can I be everyone’s favorite’.

      • Or ‘WHO is my favorite?’…
        The ‘favorite’ MUST BE THE OPIATES.
        ‘How can we recover the OPIATES?’.

  2. The first of F1 Rocket Engine’s comments I’d prefer to clarify in a phone chat. I’ve never seen the DPPR/Kratom advocacy claimed. I have seen some efforts by both groups mentioned, to delve into covert agendas driving the various attackers on pain patient use of opiates. It is nearly impossible to dig out a hidden agenda that’s been well-hidden. Which is why F1’s follow-up comment is insightful. We need to restore what lawyers call the Status Quo Ante. Why were SaRS-1/CoV-02 patients generally treated at home, and mask-wearing only happened in nursing homes? Back in 2002, opiate cough medicines were prescribed for severe coughs. When SaRS-2/CoV-19 struck, the cough medicines that worked, were no longer available, because of opiophobic restrictions. We took extreme measures of overreaction to a disease that has over a 99% recovery rate. We threw cancer patients out of hospitals and delayed elective surgery. Fearing that “3 days of opioid use could create an addict”, people with a bad cough were hospitalized, injected with opiates normally used to treat post-surgical pain, and medically observed for signs of addiction. Since there weren’t enough hospital beds for the whole population, we locked down much of the country for months, hoping to slow the spread of the 2019 SaRS Coronavirus. Opiophobia had taken hold so completely, that no one dared mention we had gotten through the previous COVID outbreak by giving prescription cough medicine to people and letting them recover at home.

    Absolutely it is time to make this about EVERY appropriate use for opiates. That’s heart disease, sickle cell anemia, migraine attacks, post-surgical pain, bone fractures, and intractable disabling musculoskeletal and neuralgia pain where nothing else works…and of course, cancer pain. And of course, controlling severe coughs.

    Opiophobia has cost over a trillion dollars in damages just from the botched response to COVID-19 alone. Cough medicine is one of the lowest-dose opiate treatments ever used. Cutting off the supply was lethal to some and harmful to everyone. Opiophobia will continue doing this grave harm, to all 330 million of us, until we outgrow it.

    Since this lack of access to medically necessary opiates has now hit everyone in the country very hard, yes, it is time to make an issue of it: Bring Back Our Poppy Based Opiates!

    (Linked if you click on it, is a short collection of scientific research, beginning in 1985, proving that the irrational fear of opiates has no scientific basis at all. Please share).

    • Oh don’t worry, the message was huge from DPPR for Kratom, they wanted everyone to rush on over and sign a petition to fight something, I think it was national legality… They have done Kratom from time to time for years. Kratom has its own effort, the Philippians are happy to encourage it. Who in the Opiate Recovery Effort has not gotten a friend request from a Philippine Kratom Salesman?

      My complaint with DPPR was loud and clear; “BETRAYAL!!!”
      Then I tried to sell my metal detector in FB Market and up flashed a suspicious activity wall and now I am done there, Can’t even get back through a VPN, …they know so much about all of us…

      Opiates need to be recovered for all of the reasons you said, which we all know now by heart from reports old and new. If we create a fuzzy image, or sound an awkward note NO NONE will listen.
      It HAS TO BE PURELY about the Opiates.
      Now that doesn’t prevent a fine advocate like Steve here or the ACSH from reporting on all of the important issue that they cover like no other reporter…
      But we finally stand up, the message must be clear – OPIATES. Opiates are legal, they are medically approved for pain, addiction and OUD are separate issues based on illicit users, not legitimate, incurable, severe pain sufferers.

  3. For the record I thought Caylee was a Good voice for the community. I approaches her on one of her make up videos some years ago. I welcomed her and thanked her for her first video that came out a big hit. I’m sad to see her chased away.

  4. I left long ago. Fought hard as I could from 09-2014 to get chronic painers to help fight and take action. So I get exactly what Caylee is saying. It gets old and becomes a waste of time. I never could understand why the power trip some advocates get on. Why such competition when all are supposedly fighting for the same cause? Maybe its a popularity contest, I don’t know but I got sick of it too. From 2009 to 2021 nothing has changed for the good, in fact its way worse so that should tell everyone where the community is at, anything but United. My motto has always has been, I dont care WHO gets the credit for fixing the pain medicine situation just so it gets done but sadly its not happening.

  5. Agreed,,some of us have gotten sicker and our meds lessen,thus not giving us to get and go we once had.However,that being said,I really thought all of us were for the right to access to effective amounts of medicines that work,per individual,no caps,notta.My thought process on this ideaology is,,No-one has the right to decide for anyone who is medically ill how much FORCED physical pains from medical illness another living entity should forcible suffer.By adding their little,only for back pain patients or,just sickle cell etc or ,”thats too much,blah blah blah,,or the biggy,agreeing w/the dea using its guns to arrest innocent DOCTORS FOR THEIR Assets,not because their guilty of anything.By agreeing w/our government on ANY restriction,u are justifying what they have done to us and our doctors’.I really thought people knew this,,I WAS WRONG. I SOON FOUND OUT AS 1 DOCTOR STATED LONG AGO,,A BUNCH OF PURSE CLUCHING BUSYBODIES , really think its ok to restrict access,amounts,and to arrest innocent doc;’s is ok,,i was stunned by this enlightenment.
    Soo much good knowledge learned in those early years,ie gate theory,high metabolizers etc,is gone,Soo many pain clinic gone.Soo many great Doc’s gone ,Soo many great people dead because of those who think they have the right to decide who forcible suffers in physical pain via agreeing w/any policy’s,restrictions, new made up definition ,new made up units of measure,,basically NOT MINDING THEIR OWN BUSINESS, when it come to those of us who are medically ill,in physical pain from their medical illness’s.JMO, until we can get under 1 banner,1 cause,via,guarenteed access to effective amounts of pain MEDICINE, no matter how much,and following the law,ie 1801-42-1395,all of us will be forced to endure a treatable condition,ie,physical pain that causes severe physical suffering,,jmo,,maryw

  6. Unfortunately no one is buying what ‘Caylee’ is ‘selling’ along with the masquerade that she supports the Abandoned. She is ‘ALL IN’ for herself, …never has been for anything else. She’s not dumb, …greedy, but not dumb. Don’t need ‘sharks’ exploiting those in need of their opiates TODAY. Lauren DeLuca is very much more valuable than her and Lauren makes me look again at what she’s and her partner are really doing as they, more than I like, try to reduce other efforts. The should not be ONE group or person reducing the effort to recover the Opiates.

    But that’s the problem, the motive is not PURE among some apparent ‘lead’ advocates. Dr. Kline and Red Lawhern and now the ACSH with Dr. Bloom, are the only efforts that have been reliable since we lost Valorie Hawk. Claudia Merandi and DPPR are sell outs for their KRATOM ambitions, no other way to see that.

    BUT, …If the effort is weak it is because of the general malaise of the greater, not the efforts of the few.

    • To Raise Interest; It has to be be about recovering the Opiates.
      It can’t be about recovering the opiates AND my dog pictures, recovering the Opiates AND Kratom, recovering the opiates AND Harm Reduction, recovering the Opiates AND marijuana, recovering the Opiates AND Drug War, recovering the Opiates AND my vacation, recovering the Opiates AND my makeup sales business… See?

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