Chronic pain groups, wow!!! Just wow!!
Many claim to be advocates and the upper management boasts about all their accomplishments when actually they do little to nothing to actually make a difference. I joined DPPR – Don’t Punish Pain Rally National & state level after a parent passed away suddenly when their medication was discontinued after their doctors office was raided. In the beginning, I found the members very supportive; however very quickly after watching multiple live meetings that Claudia Merandi did, I became very concerned. These live meeting were filled with vulgar language and disparities about other advocates. She also insisted on supporting many doctors that the evidence against them clearly indicated they were not appropriately prescribing.
The group had a lot of back biting amongst members, hatefulness and it became clear to me that this was not a cohesive group. The group actually has a few that were actually trying to make a difference, but some members treated them badly, they had private chat groups that they shared info gossiping about others within the group.
I support American Pain & American Pain & Disability Foundation they have many programs including support group, blessing page, advocacy education, etc. They are boots on the ground actually helping pain patients, vets, children to obtain necessary pain treatment.
No group will ever get along 100% of the time, they will have struggles and sometimes feelings might get hurt; however my experience with APDF is that they go above and beyond to do the very best they can as a group, it’s not about individual or group recognition. They are not looking for a pat on the back or fame & fortune; they truly care about the pain patients they are trying to help.
With all that said, I am disgusted and outraged by the recent remarks and outright lies that Claudia Merandi has been spewing about APDF and Bob Sheerin. If you want to be apart of a pain group and that truly cares, dump DPPR and join APDF.
Here 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 referenced, they know who they are and most people should be able to recognize who is being referenced.
Collecting and monetizing personal information based on specific pt health issues, would be a violation of HIPAA, but none of the individuals collecting and monetizing pt health information, are healthcare professionals/practitioners… the HIPAA law does not apply and is not violated.
Sharing is NOT ALWAYS CARING !!
FULL DISCLOSURE: I am “officially” the unpaid/volunteer Pharmacist consultant for the APDF, and I routinely have chronic pain pts reach out to me for a consult. I have never charged a pt for my advice and have always declined to accept payments from chronic pain pts that has sought out my advice. Anyone who claims that I do – or have – charged pts for my advice – IS A LIAR.
Filed under: General Problems
This is just all so sad. I want to work with everyone I possibly can, but that’s only going to work if we all have each other’s backs! Not this “mean girls clique” hurting other pain advocates!
In a agreement w/Mr.Areins,,i have had 1 encounter w/the person he mentioned,actually 1 of her advocates,,it was just a cruel statement made by a person who lever lifted a pen to paper or keyboard on our behalf,or ,”emailed,shared anything of importance to those who could help us..For me,imo,,it has always been about the message,for me,,no-one has the god given right to decide who forcible suffers in physical pain from ANY medical illness/condition,,NO-ONE,, Since truth dictates no-one can physically feel the physical pain of anothter.There are obvious physical indicators that any good doctor can tell if it tooo much,,like heart rhythm’s ,too low blood pressures after possible to much,,etc,,but if none of that happens w/YOUR medici,ne it is YOUR effective dose,,,Furthermore,we are alll adults,we KNOW our own bodies,,My point is,your body,u know it,,like no-one else,,your freedom to choose,,It doesn’t matter if its back pain or cancer,what your effective dose it your own,,,not my right to decide,your business….But their are others who always seek the control aspect,,,even down to the way a message is presented,,,ie,,,oops no dotted I,,or that T,,wasn’t crossed,,Some pay more attention to how it is written verses the true message,,,no-one has the right to torture another living soul,,,ever,,,jmo,,maryw,,
Im sorry you are having these troubles Steve, you are a wonderful source of information and an online friend.
I am not having these problems… IMO… they are directly impacting the chronic pain community as a whole and many in the community are pretty much clueless who are probably a detriment to the community as a whole. My goal has never changed.. trying to educate and motivate the community to individually and collectively advocate for themselves and to shun those individuals and entities whose goals are more self serving and not in the best interest of the community. thanks for reading my blog and making a comment