AACIPM: Resources For People With Pain

These have been trying times for everyone, and anxious times for many of us living with conditions that cause chronic pain and illness.  Everything I write about, being with people to avoid feelings of isolation, focusing on what we can do, and finding coping mechanisms that promote mental, physical, emotional, spiritual balance has been helpful to me, and I hope our readers. 

When I wrote my last blog, I talked about how we have a leg up on this staying in isolation thing. A lot has happened since then. We know more about COVID, we have better treatments and some options, all the things people living with intractable pain hope to have. However, the virus is not gone and neither is our chronic pain.

 

Though I have cut way back on the computer and social media time in an effort to manage my own pain issues, I cannot let September roll by without expressing the importance of accessing our resources. Therefore, when I got my monthly email from my wonderful group at PAINS-KC with a link to the updated resources at AACIPM, I was excited to highlight this valuable resource for my fellow fibro and chronic pain survivors.

 

WHAT IS AACIPM?

 

"The Alliance to Advance Comprehensive Integrative Pain Management (AACIPM) is the first-of-its-kind multi-stakeholder collaborative, comprised of people living with pain, public and private insurers, government agencies, patient and caregiver advocates, researchers, purchasers of healthcare, policy experts, and the spectrum of healthcare providers involved in the delivery of comprehensive integrative pain management.” Read on…

 

RESOURCES

 

The AACIPM website offers many helpful resources and useful tools for those of us living with chronic pain, such as:

 

• Apps to help manage pain, track pain, deal with flares, etc.
• Books written by friends and fellow authors, Toni Bernhard, Dr. Lynn Webster, and more that I look forward to reading.
• Videos offering summaries and visual aids for understanding pain.
• A short summary of various websites and the support or information they offer.

 

THE ALLIANCE

 

The patient and pain care providers are the two most important stakeholders for guiding and participating in important research to learn more about chronic pain as a society.  The Alliance to Advance Comprehensive Integrative Pain Management brings the stakeholders together with a united force. You can read about the history, here.

The AACIPM offers a plethora of additional information on symposiums, advocacy, who is participating, and more from those I have had the pleasure of working with in the past. I suspect you will find something that piques your interest.

 

“Those who have learned by experience what physical pain and bodily anguish mean, belong together all the world over; they are united by a secret bond.”

- Albert Schweitzer

Additional Reading:

Pain Justice: A Resource For Chronic Pain Survivors (Posted March 1, 2020)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

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ME/CFS Advocates Making a Difference: Giving Thanks, Celeste Cooper

It’s time to say thank you. Advocates work tirelessly to change the perceptions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

According to the CDC, more than one million Americans have ME/CFS, I happen to be one of them. And while my own advocacy focuses on fibromyalgia and chronic pain, and I write articles on chronic pain for Health Central,  I must support those who carry the torch for ME/CFS. There are correlations between ME/CFS and fibromyalgia, and many of us have been diagnosed with both. Maybe incorrectly, I don’t know. They do share underlying immunological changes, even if chemokines and other neuroimmune markers differ between the two of them. Who knows, maybe having a better understanding of ME/CFS will provide information so we can grasp what is happening with other invisible illnesses. We won’t know any of this without research. This is what our advocates know.

Voices Constantly Running in the Background 

As an RN, I am a member of Medscape, which is an organization for continuing education for physicians and nurses. I receive notification of CME and CEU programs and article updates. For the first time, I am seeing articles on the views of important game players, such as Dr. Komaroff.  There is a drive to educate physicians and nurses on ME/CFS as a biological illness. This wouldn’t be happening without the voices that are constantly running in the background.




Gratitude is Motivating

Many donate their time and talent. But, even if some are paid, money isn’t their driving force; it is passion for the cause. Our words of gratitude motivate them. I know this because of my own advocacy for fibromyalgia and chronic pain. So, please tell them thank you!

If I single out any particular person or group, it is only because I have personal communication with them. It by no means says there aren’t others doing the same for us. You may know someone different than I do who is making a huge impact. Show your support by telling them thank you on Facebook, Google+, or Twitter.


In alphabetical order:

Jeannette Burmeister Attorney,  ME activist, and blogger.
On Twitter

Health Rising.  Cort Johnson interprets research and collaborates with many people to improve education and awareness. Health Rising now has forums for ME/CFS and fibromyalgia.
On Twitter

The Massachusetts CFIDS/ME&FM Association.  Their mission is “To improve the lives of all people affected by ME/CFS and FM, advancing awareness, care, treatment and research.”
On Facebook – CFS Solutions

ME-CFS Community.   A world-wide community for individuals who wish to learn from, and directly communicate with those who are afflicted with ME/CFS.

Open Medicine Foundation. Supporting research and patient engagement for treatments and a cure for Neuro-Immune Diseases
On Twitter

P.A.N.D. O.R.A  Seeking to alleviate the suffering caused by neuro-endocrine-immune diseases, including ME/CFS, fibromyalgia syndrome, multiple chemical sensitivities / environmental illnesses, chronic Lyme disease and Gulf War illnesses.
On Facebook

ProHealth. Educating patients and providers to improve treatment and awareness, and donating 10% of profits to fund research and patient advocacy. Founder Rich Carson  provides forums on ME/CFS, FM, Lyme’s Disease. and general health, and topic related collaborative news and information on ME/CFS,  fibromyalgia,  and natural wellness.
On Twitter

Jennie Spotila’s blog, Occupy CFS.  Jennie’s legal savvy holds people accountable.
On Twitter

Our advocates are making a difference. 

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"Adversity is only an obstacle if we fail to see opportunity."  

Celeste Cooper, RN

Author—Patient—Health Central Chronic Pain Pro —Advocate

NEW Website: http://CelesteCooper.com

Learn more about what you can do to help your body function to its potential in the books you can find here on Celeste's  blog. 

All answers and blogs are based on the author's opinions and writing and are not meant to replace medical advice.