A few days ago I made this post
who wants to help “make a noise” ?
I have set up a Twitter account @PAINEDLIVES
There is a way to create lists to which you can make a tweet to all those on a list.
I have created four lists – for starters – Fed Representatives & Senators National TV & Newspaper
http://www.senate.gov/senators/contact/
http://www.house.gov/representatives/
IMO… we need to be able to send out 2-4 tweets a day to various groups about how things are adversely affecting those with subjective diseases … especially chronic pain.
This is a CHRONIC PAIN COMMUNITY PROJECT… if those in the chronic pain community do not “step up to the table” … it will end up falling flat
First step is to move the appropriate twitter addresses on to these lists… the more people that volunteer to get this accomplished.. the quicker it will get done..
Once the first four lists are done… there is a need for participation by a whole bunch of those in the “subjective disease community”
The tweets that are going to be going out will be under @painedlives and otherwise anonymous… I will need a group of 6-12 to go thru what is to be sent out via tweets…
The rest of the community is encouraged to send news articles that needs to be brought to the attention of those in Congress and the Media… Everyone is encouraged to send those article to painedlives@gmail.com.
Any of you interested into helping creating these lists … send me a email steve@steveariens.com and I will give you the login and password for the twitter account. Please do not start any NEW LISTS… if you have a suggestion for a new list please send it to painedlives@gmail.com
Also anyone interested in being part of the “screening group” please state so in a email to painedlives@gmail.com
President elect Trump will be sworn into office Jan 20th… which is a Friday.. so hopefully we can have the initial lists completed to start sending out tweets on Monday Jan 23, 2017.
Here is what we are up against https://www.dea.gov/pr/news.shtml this lists all the press releases by all 26 DEA regional offices and HQ over the last 15+ yrs..
Filed under: General Problems
[…] update on "making some noise" […]
Let’s think about the volume, please. I daily support 15,000 or so patients and family members in 24 Facebook groups. I doubt that I’ve had a day in the last two years when I saw more than two or three postings of articles pertinent to standards of medical care. Many days there were none.
Likewise, if I may gently suggest a nuance: chronic pain is not merely a subjective disorder. That phrasing implies “psychological”, and such a message will go over like a lead balloon among people who have already been told once too often that their pain is “all in your head”. There is also emerging evidence that chronic pain produces consistent toxic changes in genetic factors in the bloodstream. We’re a ways off yet from tracing a complete trail of breadcrumbs from precipitating incident to correctable effects that can be treated. But please don’t close the door on that possibility.
For whatever it’s worth, I’m willing to participate in your editors / overview group. I already do tweets in this area as often as I see articles that seem to speak in support of chronic pain patients.
There are numerous disease states that fall under the “subjective category”… anxiety, depression, pain, ADD/ADHD, mental health.. there is not always a objective or clinical cause of the reason in how these diseases impact a pt’s quality of life… and in the case of a chronic pain pt .. there is no objective measurement of the intensity of the pain that a pt is experiencing… if there was.. there would be no need for the 1-10 “picture scale” for pts to assign a “number” to their level of pain. While the source of some pain have an objective source, none of the intensity of a pt’s pain can be measured objectively and most pts will state that the perceived intensity of their pain and its impact on their quality of life is where it all counts for them