over the last couple of weeks, I have been reviewing the stats on my blog, Face Book and Twitter. Many times it has been stated by many that the chronic pain community seems to be impossible to come together… to unify.. “Unity” can have many facets..
It is claimed that there is 100+ million chronic painers… but where are they ? I wonder how many chronic painers could be sorted out from the hundred or thousands of face book pages and just how many would the net number be on all those social networks ? A few thousand that are regularly active.. it could maybe be up to ten thousand. Even at ten thousand that is abt 0.01% of the total number of chronic pain pts
One of the facets of unity is speaking with one voice or talking about one specific agenda. How many people or groups claim they represents the chronic pain community and many/most/all have at least a slightly different agenda and message.
Have you ever been in a restaurant/bar and the place is so noisy that the people at your table can’t hear each other because of the ambient ” white noise ” ?
Is the chronic pain community making very little progress going forward because all of the people that needs to be influenced to enact change is just hearing ” white noise” because there is no unity of message ?
Of the numerous “players” in this “war”, the only one that seems to have a unified message is the DOJ/DEA and they have a well organized distribution of that message https://www.dea.gov/press-releases and it would appear that our media dutifully regurgitates these press releases on a routine basis.
Prescribers seem to fall into three different “camps”, those who are going to do their best to treat their chronic pain pts as they always have, those who believe that if they move all their chronic pain pts to < 90 MME/day they will be “safe” and a third that wants all of their pts off of opiates and controlled substances.
The Pharmas seem to just wait until something happens and hires law firms to settle the issue with some bureaucratic entity getting “paid off”
The various parts of our corporate healthcare system ( hospital systems, chain pharmacies, insurance/PBM, etc ) are doing various things, many of their actions/policies seem to be highly influenced by their legal depts or outside legal counsel.
IMO, part of the lack of unity within the chronic pain community is – at least from my media stats – how very little there is of sharing… According to my Twitter account I have nearly 3000 followers. I started noticing that when something I posted got some re-tweets… it was very seldom out of the SINGLE DIGITS of re-tweets. There will never be any sizeable unity within the chronic pain community .. if people don’t share with others in the chronic pain community what is going on around the community .. either good or bad… how is the community going to ever come together ?
When I started my blog, FB and Twitter accounts abt eight years ago… I really didn’t know what specifically I was going to do with them. Everything seems to evolve that my focus was to be a educator and motivator. You can’t “fight the enemy” unless you know what the enemy is doing but knowledge/education that does not result in some action taken… is a total waste.
I am starting the new year by taking a total hiatus from social media. I am NOT closing nor deleting all of my accounts, I believe that there is a lot of valuable information on those accounts that I have accumulated over the last 8 yrs.. that may be useful to some pts in the future.
My email (steve@steveariens.com) will still be active and I will reading it
Filed under: General Problems
Miss you already…
I would also like to thank you for everything you have done. You are such a strong caring person. The world lacks people like you. I am one of the thousand that have benefited from you Steve. I think it is hard to know who to contact. There are so many places I have become confused on who to contact. If anyone has a list of people or organizations to contact try to fight this madness it would be a big help. If anyone know of such a list and the best way to contact them, I would love to send this on to all of the pain patients and organizations as possible. That way it would allow patients to know who and how to contact the big players against us. Many of us who have a strong voice do not know who or how to contact them. Once again Steve, I cannot say enough about the hope you have given so many.
From a long time lurker — thank you Steve for all you do for often defenseless CPP folks. We learn more from you than just about anywhere else on the net, so please keep it up! You are needed and appreciated more than ever in these dark days.
We shall call the new secret group of VERY strongest and strongest advocates, …The Firm… Ok, The Amazing Firm. All wishing to join in the prime group or sub-prime group shall respond to voter results separated by Prime and subprime issues majority votes results and be so bound.
A secret group will be formed of only the strongest advocates.
Who will be a strongest advocate will be determined by vote by the VERY strongest advocates.
I needed six months off once and I took it, no apologies. I do not stand in the way of anyone needing such a relief.
I will invite the the group of VERY strongest advocates at FB, that is not so hard, but we will need multiple SM or private internet media venues (chat groups) to insure perfect, faultless instant connectivity unless one is ‘sidelined’. I am not a very strongest advocate. Such very strongest will be contacted with the above message by myself. What will change?; How precisely we shall move forward, where assets go and who is permitted in the strong advocate sub-group. The strong advocate sub-group shall neither know or hold authority of the very strong advocates on pain of excommunication (I never had occasion to use that word “excommunication” before, heh 😉 ). No one NOT at LEAST a strong advocate shall receive membership. Then go from there?