CDC Chronic Pain Group Grows for Friday “Assembly”

CDC Chronic Pain Group Grows for Friday “Assembly”

A group called Chronic Pain Warriors Unite for Our Right to Pain Management will attract participants from all fifty states when they convene in Atlanta on Friday for a peaceful assembly at the Centers for Disease Control.

An Indiana woman, Johnna Magers is leading the movement to “educate the CDC” about the impact its Guideline for Opioid Prescribing for Chronic Pain has had on patients.

‘The plan is to have everyone stand in single file line so that we can show who and how many ppl have been affected by the guidelines,” she said.

Magers also indicated she has a film crew coming to the event which will begin at 12pm Eastern Daylight Time.

When we first reported on this last week, a number of commenters praised Magers for her efforts to bring the story of the chronic pain patients to the CDC.

An example is what Fila Paragas who is a CRPS patient and activist wrote:

“I am with you all in thoughts and prayers for your great efforts despite tremendous difficulties with all your conditions. Pain patients are suffering in US and elsewhere. Some are no longer around to lend their voices. Chronic Pain patients and their lives do matter! You deserve better…to be treated with dignity and respect! And more! Let your voices be heard. Thank you very much.”

If you are heading to Atlanta, the folks are gathering at the Holiday Inn Northlake and will bus over to the site. (Magers warns not to park near the site which is at Clifton Road and CDC Parkways because the cars may be towed).

In addition to the people who be in single file line, she has some cutouts of people to represent what she says is a 40-page list of pain patients who took their lives in recent years since the CDC Guideline was issued in 2016.

For more information, here’s the Facebook page of the group.

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Authored by: Ed Coghlan

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Sheila Bell Gilmer

I noticed the date in the photo was June 2019. Will anymore ralleys take place? If so. Where? What dates. Etc? And. Thank you all so much for standing up for us whom suffer. Day in. Day out. With chronic pain and yes. I am praying for us all I’m hoping that I can make a difference because I have been through alot since the changes. I am on permanent disability due to chronic pain and arthritis. 4 bulging discs. Deg disc disease and Fibromyalgia n neck problems and symptoms of lupus. Torn ligaments in my leg. R A. N. Osteo. Severe pain every day and I want to help. God bless you all who are standing up for yourself and us who cant attend the ralley. Sincerely I have hope! Hoping that things will change for us who suffer. ??? For the better!@!

Am2PmRN

This was actually a DPPR event but other groups joined us.

Am2PmRN

Pictures and video of the event are on many of the Don’t Punish Pain Rally FB pages. If you’re not a member, join the group for your state and also the national page, to stay up to date on future rallies and to find out what you can do to help! We need PEOPLE!

Notasheep

Does anyone have a video????

Molly K Canfield

Where can we locate the coverage of the protest? I cannot seem to find anything on the event as it was happening or reactions afterwards.
Or, did the facts get buried by media and our cruel, omnipotent government?

Jesse G

Thank you for being there for those of us who cannot be. The state I live in has abruptly made it practically impossible for me to continue on with my livelihood because of this demonstrably falsified hysteria…

Terry Ott

Rosalind Rivera’s comments below are so apt, and she adds: “Perhaps Death is better!” After a decade of chronic pain ate away at every aspect of her life depriving her of any things we consider “normal”, my wife of 50 years (CJ) cast her “vote” on this. She became a cancer patient for a brief time with hospice staff overseeing the palliative care — during which all of her pain was managed down to “negligible” in the hospital before and after major surgery. But that’s nothing we could do in a home setting.

CJ refused chemotherapy, and so she passed away peacefully. Quite simply, she realized that even if chemo worked to postpone her death she would never in her lifetime (she was almost 80) be able to conquer or even cope with her intractible and sometimes excruciating pain. She was physically weakened and emotionally drained, and we’d tried everything proposed via a terrific pain management MD.

CJ said to me and her shrink she was mentally preparing for suicide. So it was not impulsive; she was a PhD scientist who thought long and carefully about all major decisions. As it turns out, cancer preempted CJ’s “final decision”. She was a warrior, but when a warrior loses all hope based on the undeniable realities, then rationality kicks in.

We were told by CJ’s oncologist, who had come to understand the chronic pain issues, that CJ had an unusual blend of confidence in her convictions, dignity, and resolve to make a courageous decision that no one who knew her would question. I understood that about CJ, and had never tried to talk her into any other decision. But it was a relief to learn that the oncologist would understand enough about the effects of chronic pain to see it the same way.

In closing: Opioids were the ONE thing that enabled CJ to have some relief, albeit just 1-3 hours after each dose, To generalize that “the science” shows they’re ineffective for chronic pain is [censored].

Annell

In bed 95% time! No life, out of food last 3 days had cup apple sauce bf and slice cheese and pudding for lunch and supper. Trying to get to store. I did drive mile today for salad that should last 3-4 days. Even if I had food can’t stand to cook and clean. So guess it doesn’t matter with pain can’t do anything! When I am able to shower it’s a good day, maybe 8 or more days. This is just too much to put people through. No life here

Debby

Would really like to be there with all of you. Thank You for being there to represent those like myself who are not able to be there in person.

Kelb

Two from WI Are here !!!! Looking forward to joining everyone at CDC shortly…..

Glenda Locke

Thank you for representing us in this way . I am a Chronic Pain Warrior with CRPS . I can’t come because I am in a flare and have full body CRPS . I am having issues getting meds from my doctor . Please feel free to use my name . We need help ! We need understanding! God bless all of you who are helping and representatives of all of us with Chronic Pain and need meds and quality care !

Susan L Myers

Oh I so wish I could attend!! I am so limited with pain everyday it’s driving me crazy. We can’t even discuss the dosages at the risk of being messed with even more and that just means more limitations. I’m there in spirit “Warriors!” Kick ass!!

Deborah Rank

Anyone know of a good lawyer who is willing to take on this [edit]??
I’m on PERMANENT DISABILITY because of the chronic pain issues that I have, SSI approved my disability claim in a 5 minute court hearing in 2007.
I’m now being forced into considering a permanent end to the pain. And I’m pissed off. I haven’t done anything wrong, but my insurance company advocate still hasn’t done anything about finding a pain management provider for me. I feel that I’m being discriminated against, so much for being able to actually live or return to work and have a life. Nope, keep them well below the poverty level and kissing their [edit]. I’m done.

Misty Hoffman

Thank you all so much! I wish I could be there too! I’m struggling not to be on that 40 page list. I want what life I had back and to not be bedridden writhing in agony. I know I am not unique. I truly hope tomorrow gets widespread media coverage. The world needs to know how legitimate pain patients are being tortured all the while addicts are STILL (and increasingly) overdosing in droves. The “guidelines” aren’t saving lives, they’re taking more lives!! Thank you Ms. Magers and everyone fighting for our rights! Our lives matter too!

Jan Fulton

Any chance this will be televised or streaming so we all can watch?

Jan Fulton

Any chance this will be on TV or streaming so we can see?

Penny

Thank you all so very, very much for speaking up for the thousands upon thousands of CPPs (including myself) who are not able to attend Friday’s assembly. I am so very grateful, as well, for the many enlightened and caring physicians and other medical professionals who have openly expressed their opposition to such misguided policy. Bless you all! What saddens me most, I think, is that there are countless pain management physicians who have chosen to treat the CDC guidelines as “law” and have refused to join together and stand up for their patients in pain. It would seem torture – though outlawed when it comes to dealing with terrorists – is rapidly becoming normalized for those of us who live with intractable/chronic pain. Or should I say, for those of us who are not part of the wealthy, powerful 1%! I would VERY highly doubt anyone who falls into that category who suffer from any type of painful medical disorder is left untreated or under treated by their physician(s).

Dar

I do not understand why chronic pain patients continue to suffer and die, and the controversy continues, after Andrew Kolodny clarified that the war being fought against opioids is not meant to target medically-necessary treatment for pain patients, but was established to fight illegal drugs like heroin, and fentanyl.
We believed that would end the war against pain patients, and the much needed end to the discrimination, and demonization, of established pain treatments, necessary to end the torture of pain patients.
We were told the guidelines were meant to target the illegal opiod epidemic, not the legal, and needed treatments for chronic pain patients.
Why then, are we-the injured, the disabled, the most vulnerable sector of society still being treated like criminals, and still fighting to get our established treatments back?
I guess that Andrew Kolodny did not really mean what he said, or the agencies responsible for the suffering, and death, of so many patients who are not responsible for this torture occurring right here in America, are just playing with our emotions, and laughing all the way to the political platforms, they embrace, to look like heroes, but clearly they are not heroes. Are they still targeting illegal drug sources? It so, where are their numbers showing their success? We hear alarming numbers of drug-tapering, arrests of pain doctors, etc., being hailed to the public, but aside from the criminal portrayal of pain patients, and misinformation about legal, and necessary treatments for pain patients, who adhere to opioid treatments for horrible, debiliating medical conditions, where has Andrew Kolodny’s (supposed) clarification of his political agenda left us?
Nothing is changing, and the abuse of power continues without question. Our civil rights continue to be violated, and that is against the law. Everybody is aware of that, yet it does not seem to matter.
It would help to clarify calling legal pain meds from the word ‘opioids’.

Rebecca

Thank you all for this I wish I could be there! I am a cpp its a struggle everyday just to try to function aa half way norm life.please keep fighting for us !!! My prayers are with u all.

Molly K Canfield

I’m in the hospital right now here in Georgia . I had to have emergency exploratory surgery due to significant pain in my abdomen I have heard no less than three lectures about my pain and how it best be managed everytime I need pain medication I usually have to ask at least three times and then debate about whether or not I should get it I blame this on the CDC and the my DEA they’re making it harder and harder for us to even exist ,form something of a normal life and God help you if you get in the hospital .I’m here first-hand to tell you that it is awful.

Jackie

Thank you so much Johnna for speaking so eloquently for us! You’re our voice and strength for those of us that can’t physically make the trip. I am there in spirit cheering you on! God bless🦋

Cindy

Thanks so much to Johanna and all attendees.
I can’t travel at all. I consider it a major success if I can make it to my doctors’ appts which are within a 15 minute radius.
I can’t imagine doing such a thing with horrible chronic pain — especially being on a force taper, which so many of us are.

Alison Trowbridge

Thank you all for speaking for the millions of us unable to attend! We are broken and need our voices heard! BRAVO!!

Ronnie Graves

I am aCPP wish i could be there. Thetr are millions who are unable to attend because of pain and also finnacialy. Thank you to all who attended. You speak for the millions who suffer. God bless you all for speaking for all

Shirley

Wiish I could be there Thank all you Pain warriors for standing up for all of us pain people that cannot be there sending hugs to you all for
Fighting for the Inhumanly Torture to stop.

Cindy

I wish there was some way for all of us to go with you. Thank you

Janice

Thank you Johanna! God Bless ALL of those are able to go and ALL of us who are unable to go. We must Pray for change!

Matt Anderson

Wish I could be in Atlanta for this assembly of Cronic Pain Brothers and Sister’s!

Judith Jermark

Thank you Johanna Magers for all you are doing to give recognition to the people who suffer from intractable chronic pain. This includes Veterans, elderly, children, disabled, cancer, palliative care and surgical populations. These fine people have been stripped of their human rights, and the Americans with Disabilities Act has been cast aside by the CDC, FDA, DEA, and other federal and state governments throughout the USA.

Thank you to the other individuals who are representing all chronic pain patients, including the people who have taken their own lives because of suffering pain with no help from frightened healthcare providers, pharmacists, and the always-money hungry health insurance companies.

Again, thank you all for your efforts on behalf of Chronic Pain Patients, who no longer have access to appropriate and reasonable medical care, and to those patients who have died because they could no longer endure the agony brought on by the CDC.

Thomas Wayne Kidd

Unfortunately I cannot attend this, but I pray this will register with those who started this evil and wickedness against us. I would encourage all to look online at something called “Agenda 21” and read it closely. I fear that a concerted effort at population control is taking place. Thank you Ms. Magers. God bless you everyone.

Donna Hill

Thanks and bless you woman! Tommy Stergas will be there representing for Oklahoma. Make history like I know you ALL will! Our well wishes and prayers for safety go with all patients traveling.

Stacie Wagner

Thank you Johnna Magers and thank you to everyone else that is attending physically or in spirit. Please shout and hold this sign – “The CDC is killing me” use it as a battle cry of truth. They are killing chronic pain patients and have a legal way to not take responsibility for it. We are frustrated, angry and desperate and feel our pleas for mercy fall on deaf ears.
I will be cheering you all on from Arizona while chanting
” THE CDC IS KILLING ME!!! “

No name

I hope and pray that the law will make this very important matter right.for people who truly do have cronic pain and who has been treated for cronic pain and does not abuse their pain meds are suffering now. Because of the people who make a decision to abuse drugs.why must the people who do not abuse the pain meds be punished? I have been under pain management for several years now .always doing what I’m supposed to. But than the day comes that I was told I would haft to choose between pain and my anxiety and severe hand trimmers. My world has been drastically changed by this.i can only pray that this problem be fixed. Make it right.my anxiety is so bad I can’t go to stores or drive.i was on morphine and norco for break through. But got told its either morphine or norco. Mind you this is medication I have been on for several years.

Ive had this rally noted on my calendar to remind me to be praying for Johnna and all who will attend! Let your voices be heard!
I yearn to be there, to be part of and to witness it but unfortunately I can’t travel anymore. I will be with you in spirit for sure. I’m so proud of and grateful of you all!
Rest in peace all those and many others whom the cut outs will represent. I hope the cutouts will be impactful for sure! I cannot wait to hear about the outcome. God bless you!

Rosalind Rivera

Perhaps Death is better!

Rosalind Rivera

Dear Ms. Maher’s,
My many thanks of appreciation for your work against these rigid policy makers who apparently have absolutely no idea of how it feels not to live but to merely exist from day to day under the vice of torture. I too am a chronic and now intractible agony of cruel and unjust inflicted pain. I wish that I could be there with all of you however the circumstances that be do not allow me to attend. My heart, soul and thoughts are with you.
I have reached a point in my life where I too am considering whether I should seek other means that will finally deal with my long standing suffering.
Go Pain Warriors!

A heartfelt thank you to Joanna Majers and every single soul that will be in that line! This is absolutely brilliant!! I will be there in spirit, this is something I wish I could definitely attend but can’t leave my little girl. It’s just us. If at all possible please make this something that the rest of us that can’t attend can watch via a link on our smartphones and computers please. Even a picture would be much appreciated, I get cold chills just thinking about it. Again, this is absolutely brilliant!! Prayers for a safe trip and may God bless everyone of you!

Nancy Johnson

Many thanks to Johnna Magers for organizing this event! We all need to be heard! Our lives..and in this instance the QUALITY of our lives is at stake..it is so unfair! For so many of us chronic pain sufferers..these pain meds are a Godsend that allows us to lead more productive lives!!!
Thank you to all who participate in this event! Praying the CDC takes notice, as well as those in control of who is ‘allowed’ to be given pain meds to improve their quality of life!

Victim left suffering...

Thank you, JOHNNA MAGERS! Please know that while many of us intractable CPP’s are currently medically unstable and unable to make the trip to Atlanta, we want you to know we deeply appreciate what you do and have done to be one of many voices on behalf of cpps. While we cannot be there physically, we stand beside you in spirit and shared efforts to help turn the tides of the painful injustices done to all of us.

I’ll be anxiously awaiting for news of a spirited, successful outcome.

Again, thank you, Johnna.

Most sincerely,
The millions left suffering.

Kris Aaron

Millions of pain patients will be with this group in spirit. Not that it will matter to the thugs at the DEA or the “professionals” at the CDC who let PROP and Andrew Kolodny bullshit them into their “recommendations” for opioid reduction.
It’s unfortunate that individuals with impressive medical credentials can’t tell the difference between legal, prescribed opioids and illegal fentanyl imported from China. Makes me wonder just whose interests were being served…

Holly

I sure wish I could be there! I am very grateful for all the warriors trying to help all of us! God Bless!

Thankfully there are many pain groups & individuals attending this assembly at the CDC in Atlanta. People are flying to Atlanta from all across the country to have our plight heard. Thank you to Johanna Magers for all her hard work in planning this important & peaceful assembly.

Walter Strickland

I will be there with you in Spirit, but no way I can leave home.I am hoping the best with this effort and many other efforts by many people that common sense will prevail in all of this.Thank you and let’s keep up the good fight for our very lives.

Gwendolyn Palmer

Wish I could be there… please put my name on a cut-out… Gwendolyn Palmer…
Keep up the good fight!!!

Susan Smith

I can’t be there w you, but I am in the front line with you !! We deserve better and to be seen and heard for our tireless days of chronic pain. Love you a loyal Mm

Gary Raymond

Godspeed!

JESSICA M REIBLE

This is incredible! far too many people have been affected by the CDC GUIDELINES! They have caused irreparable damage to Chronic Pain Patients. A class action suit needs to be filed against them for what they have caused. Also, the Medical field needs to decide if their oath & patients are more important than a GUIDELINE. That’s the kicker in this whole thing,, they did this damage with what was called a “guideline”.

Thoughts & prayers are with this group. I wish I could attend.

Debbie Nickels Heck, MD

I would be there but I’d already planned to be in Hawaii for a long planned and greatly needed vacation. I’ll be there in spirit. Thank you for your efforts.