It is a pretty accepted fact that the chronic pain community is – and has been – very divided… It seem that a small group of people who claim to be chronic pain pts and/or chronic pain advocates have been very busy at work trying to be more than just the “usual stuff” starting late summer – early fall last year. First it my blog getting labeled as a SPAMMER by FACE BOOK… some even made up stories about another chronic painer being the reason behind my blog being labeled as a SPAMMER. Then there was the APDF protest in DC last fall and one of the BOD members had done a TV interview with all three station in DC… and some people called the station the day before the protest and told the newsroom that the protest was actually a PLANNED MASS SUICIDE and the interviews done…. were never aired…
During that same time frame, these same people, started calling and email one of the highly visible chronic pain pt’s pain doctor and apparently fabricating so many lies about the pt… that the pt was discharged from the pain practice that the pt had been going to for 27 yrs.
The question has to be asked, are these people who are putting themselves forward as pain pts and/or pain advocates or are they really just shills. What legit chronic pain pt goes out their way and fabricate lies/stories to try and get a chronic pain pts toss out of their pain clinic… knowing how difficult it is for a intractable chronic pain pt to get into a new clinic. IMO… that has to done only by some people with a very depraved mind set.
IMO… it may get worse from here… have you noticed that there are a few “pain advocates” have been in hyper-mode… talking about pts getting some severe side effects from using certain medications, or promoting some products for chronic painers to get/take when they have had their pain meds taking away…
Just be careful who you give your personal information to… if someone is pushing a product, or you get a phone call from some law firm about physical damages you have experienced from taking one or more particular prescription medication(s) or you are “hooked-up ” with some entity selling some supplement that some claim helps with pts dealing with chronic pain or you are contacted by some entity – like a university – that is starting a new “pain study”… because someone has gotten PAID to share your name/personal information or if you have purchased some product that they were pushing.
You may think that is perfectly OK for someone to monetize the selling of your personal information without your permission, but some of these individuals may be more interested in advocating for the money in their bank account.
Full disclosure: In the ten+ years I have had a active blog and advocating for chronic pain pts, my goal has always been to educate and motivate the chronic pain pt to advocate for themselves. I have NEVER requested money from pts that have sought out my advice, I have even turn down some of who have offered to pay me, I have never shared nor sold any personal pt information to any entity for my personal financial gain. After this post is published, I expect that some of these “chronic pain advocates” to come after me… I went to pharmacy school to help people and even though I am retired, I follow what I believe is my true advocacy.
Filed under: General Problems
[…] I heard it through the GRAPEVINE […]
Oh my goodness, this is sickening. I heard about a couple of these incidents weeks after it happened, but I didn’t know one of our fellow pain patients was discharged from care. How could someone sabotage a fellow pain patient? That’s disgusting! Pain care providers are extremely hard to find these days. I really hope the patient was able to fix this with their doctor.
It’s a shame the APDF’s protest was interfered with and the interviews done were not aired. These interviews would have been beneficial to the pain community.
I’ve seen videos posted about the “side effects” of a particular medication. I try to ignore them. Many of us know already that there’s more than just one medication that causes dry mouth and tooth decay. I’ve never taken that particular medication and I had to get dentures because of dry mouth and tooth decay. Many medications have this side effect, opioids are just one of these medications.
I know every advocate has different ways of advocating, but the sabotage, interference and harassment really needs to stop. It’s not productive and it makes us look like a bunch of two year old’s picking on each other by those looking in from the outside. If an advocate feels it’s necessary to harass someone, then it should be directed at the agencies and entities that have caused this mess of a situation.
This person does it with ease! They want to win apparently not do battle together… Thats sad in itself
[…] is a recent post that I made on my blog https://www.pharmaciststeve.com/i-heard-it-through-the-grapevine/ that came to me from what I consider to be a fairly reliable source and the people/entities that are […]
[…] I heard it through the GRAPEVINE […]
People who cause damage to another patient, who spread false news is sad. They must be called out and shunned. Pain patients have enough to deal with in living day to day. For those who cause this much pain must be called out and they must pay. They disgust me.
Imho, nobody selling “merch” is doing “advocacy” for the benefit of the chronic pain community. Why do we need things like that when we can’t leave our house?
I believe in karma and certain people deserve this existence because of their “advocacy,” giving false hope to desperate people. This is Cruel and Unusual Punishment and EVERYONE involved deserves to suffer. I’m not close to being the same person I was 3 years ago, when I lost my long time PMP. I don’t even know myself. I just want it all to end, one way or another. Any way is fine. I’m done.
Amen…you said it perfectly!
Amen Mr.Areins,,I mentioned this in a early comment..”They” will slip,when u speak w/them,,meaning saying things like,”well back patient shouldn’t get this or that,,my point is,,,showing themselves as someone who,just like kolodny,thinks they have the rite to decide how much someone is to forcibly suffer.Its NO-ONE place to decide who,how much,,but you,,,I’ve learned,,the hard way ,many times,.,,If u just listen to those who claim freedom of what-ever you need to lessen that physical pain from any medical conditions,,you will HEAR,, the need for ,”control,” in their words,,,just listen,,and you will weed them out.,,For me again,,not my place to decide who suffers in physical pain,never will be,,unfortunetly like sooo many others,right now,,my place,via my years of physical pain from medical conditions/errors/simple being a women in health care,the knowledge i have,unwillingly learned,my place is to work/w/out credit, to get this TORTURE stopped that was thrust upon us all,,by a self righteous rogue psychiatrist drunk on power,,who has ,killed soooooo many good people,,,,,its gotta end,,some how,some way,,,,jmo,,maryw
You always do amazing work for the CPP community
Yes Mr.Sheerin ,,Mr Areins has always done amazing work for the CPP,,and the children w/CPP,deadly diseases as you have as well,,,,he has never asked me for 1 dime,for the use of his brain,ie wisdom,,There are a few others that truly help,simply because it is the right thing to do,,,As Steve put it 1 time,,I don’t l;ike seeing the medically ill abused,,,its that simple,,,When your pure at heart for the cause,no $$$$,,,it shows,,,,jmo maryw
Bob, I hope you are ok. Love you buddy.
I believe that ANYONE that would interfere with someone’s pain management has to be a fake pain patient. Why would anyone want to do something like that? As you said, Steve, it’s too difficult to find decent pain management.
As for FB, my account was hacked, so I changed the password AND deleted it two weeks ago. Just a few days ago, I got a notification that someone was trying to sign into the account. I belonged to several advocacy groups and did my best to try to change things, but I got frustrated and discouraged, not to mention tired…I only have a limited number of spoons. And I was scammed, twice, by…well, I think you know of whom I am referring.
I have given up, let the chips fall where they may. These new “guidelines” are a joke, either things aren’t going to change or they’re going to get worse. Just my opinion…