Resources

 

American Chronic Pain Association (ACPA)

 

The mission of the ACPA is to facilitate peer support & education for chronic pain patients & their families and to raise awareness among the health care community, policy makers, and the public at large about chronic pain.

 

International Association for the Study of Pain (IASP)

 

Mission: IASP brings together scientists, clinicians, health care providers, and policy makers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.

US Pain Foundation

 

An organization that informs, empowers, and advocates.

 

American Headache Society

 

A professional society of health care providers dedicated to the study and treatment of headache and face pain.

 

American Headache and Migraine Association

 

Mission to help those affected by Migraine and other Headache Disorders find and use our voices to empower patients, family members, friends, and care partners. Through education, support, advocacy, and research we will bring hope and banish the feelings of hopelessness that too often accompany these disorders. We will work to dispel myths and misconceptions, thereby working to eliminate the stigma we face all too often and replace it with compassion and understanding.

 

For Grace

Founded in 2002, For Grace’s main goal is to increase awareness and promote education of the gender disparity women experience in the assessment and treatment of their pain.

American Fibromyalgia Syndrome Association, Inc.(AFSA)

 

A nonprofit organization dedicated to funding research that accelerates the pace of medical discoveries to improve the quality of life for patients with fibromyalgia.

 

National Fibromyalgia and Chronic Pain Association (NFMCPA)

 

Non-profit organization that supports FM research, education, and awareness and overlapping conditions.

 

Share Care - Fibromyalgia Expert A question and answer platform for health created by Dr. Mehmet Oz, Jeff Arnold, Harpo Studios (Oprah) and Discovery Communications.

 

Kevin White, MD, PhD Author, clinician, researcher and advocate for fibromyalgia

 

American Thyroid Association

 

The ATA is the leading organization focused on thyroid biology and the prevention and treatment of thyroid disorders through excellence and innovation in research, clinical care, education, and public health.

 

CFIDS Association of America. Dedicated to education, political activities and research.

 

Health Rising Up to date news by Cort Johnson supporting patients with ME/CFS and all NEI disorders.

 

International Research Foundation for RSD/CRPS.

 

Loaded with many tools and information for treating, diagnosing, and researching.

 

International Association for the Study of Pain (IASP)

 

Mission: IASP brings together scientists, clinicians, health care providers, and policy makers to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.

 

Myalgic encephalomyelitis: International Consensus Criteria

 

The National ME/FM Action Network A Canadian charitable organization dedicated to Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) and Fibromyalgia (FM) through support, advocacy, education and research.

 

ProHealth ProHealth is not just a supplement store. They focus on education for fibromyalgia and chronic fatigue syndrome, advocacy, and they are dedicated to keeping up on the latest research. You can subscribe to their newsletter, which is packed with helpful information.

 

PANDORA Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy is a patient and political advocacy group for all NEI Disorders.

 

Rocky Mountain CFS/ME & FM Association A non-profit organization for CFS and/or (FM) patients, administered by volunteer officers.

Mission: Advocate for research, awareness, education and support.

 

 

Whittemore-Peterson Institute Research Institute dedicated to researching neuro-endocrine-immune disorders

 

Drug Watch Provides extensive information about side effects, drug interactions, FDA recalls and drug alerts

 

Caremark.com Check drugs you are taking for interactions with each other, including over the counter drugs or herbals and vitamins.

 

FDA recommended education on opioid use

FDA Labeling

FDA Medication Guides ER/LA Opioid Analgesics REMS

Patient Counseling Document

 

Vulvar Pain Foundation

 

The VP (Vulvar Pain) Foundation was established in 1992 as a nonprofit organization to end the isolation of women suffering from vulvar pain and related disorders (fibromyalgia, interstitial cystitis, irritable bowel). The Foundation’s purposes are to give reliable information, hope, safety, and success to sufferers and their families, to advance the standard of medical practice in treating vulvar pain syndrome, and to promote scientific research.

 

Co-Cure

 

The Co-Cure list is a non-discussion list. You cannot post or discuss things; it's for information only! The list name "Co-Cure" stands for "Co-operate and Communicate for a Cure." This list has been established with the goal of furthering co-operative efforts towards finding the cure for the illness(es) commonly referred to as Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM).

 

Disability Secrets

 

An informational site devoted to people who are trying to win Social Security disability benefits if you have fibromyalgia. It offers some advice and some useful tips.

 

Environmental Illness Resource

 

Provides information, latest news, articles, links directory, forums and other resources to sufferers of chronic fatigue syndrome, fibromyalgia, multiple chemical sensitivity, allergies and other related conditions.

 

Infinitec

 

A website for a wealth of information on enhancing your abilities to live a full life with chronic illness. Sections include lifetime modifications to help you move through life easier, learning tools, accessible transportation and recreation, work modification resources, finding jobs, workplace resources including ADA updates, and "Finding the Money" with funding information. They even have a section on adaptive gardening.

 

Give Pain A Voice

Giving Patients A Voice" non- profit is a grass roots movement based in Toronto, Canada. Many existing Pain organizations focus on specific Pain demographics - such as Arthritis , Crohn' s and Migraine. Beyond a multitude of publicly recognized Chronic Pain conditions, there lies a whole subset of Pain patients who have been marginalized because our specific long term pain does not fit any existing model . 

 

The Pain Community

The Pain Community (TPC) is a non-profit organization that engages patients, caregivers, healthcare providers and researchers to improve access to effective pain management. Through comprehensive, integrative pain care, people can regain a life with pain at a higher level of wellness. TPC has educational and advocacy tools as well as houses research resources from respected experts in the field of pain.

Chronic Pain Research Alliance

Millions of Americans suffer from the 10 chronic pain disorders listed below. All of these conditions are poorly understood and predominantly affect women. When a person is affected by two or more of these conditions at the same time, they are referred to as Chronic Overlapping Pain Conditions (COPCs). The complexity of overlap among COPCs is shown in this figure. Any combination of conditions is possible. Some people may develop two disorders – either at the same time or over the course of their lives – while others may develop three or more.

 

Chronic Disease Coalition

The Chronic Disease Coalition is a nonprofit organization dedicated to protecting the rights of chronic disease patients against discriminatory policies and practices.

Empowered Patient Coalition

The Empowered Patient Coalition is a consumer and advocate-led effort to inform, engage and empower the public to assume a greater role in their own medical treatment and in becoming a driving force for meaningful health care reform. The coalition is a California non-profit organization and a 501(c)(3) charitable organization as determined by the IRS.

I am essential coalition

I Am Essential unites diverse national and state patient and community organizations, each representing a unique mission, to ensure access to quality and affordable health care for the millions of individuals and families enrolled in Qualified Health Plans established under the Affordable Care Act (ACA). 

 

Patients Rising

Patients Rising is a national nonprofit organization dedicated to providing support and education to people with chronic and life-threatening illnesses. We work with patients to advocate for access to the treatments, innovations and care they need.

Partnership for Fighting Chronic Disease

The Partnership to Fight Chronic Disease (PFCD) is an internationally-recognized organization of patients, providers, community organizations, business and labor groups, and health policy experts committed to raising awareness of the number one cause of death, disability, and rising health care costs: chronic disease. 

Global Genes

Global Genes’ story began with our loved ones. We are the friends, family and supporters of patients close to us who are affected by rare disease. We understand the confusion, the overwhelming experience of the unknown and the feelings of isolation all too well. And we know we aren’t alone. That’s the reason Global Genes was born – to connect, empower and inspire the rare disease community.

Disability Rights Advocates

With offices in California and New York, Disability Rights Advocates (DRA) is the leading national nonprofit disability rights legal center. Its mission is to advance equal rights and opportunity for people with all types of disabilities nationwide.

A Guide to Disability Rights Laws

Disability Secrets: An Overview of Social Security Disability Insurance


Social Security Administration Benefits For People With Disabilities


10 Myths and Facts About Social Security Disability Insurance

TED Talk: “The mystery of chronic pain”


American Society of Anesthesiologist’s guide to pain management

Alternative pain treatment directory


Complementary and integrative medicine – MedlinePlus


National Center for Complementary and Integrative Medicine at the NIH

Health Revolution Radio


National Pain Report

Pain Medicine News


Pain News Network


PainPathways Magazine 


Practical Pain Management


Migraine.com


Medical News Today – pain /anesthetics


Relief news


Spine-health

Mesothelioma Support Groups and Resources

Asbestos

Coping with Mesothelioma: Online Support Group

This monthly online support group focuses solely on people affected by mesothelioma and is lead by licensed mental health counselor Dana Nolan.

The Mesothelioma Center Facebook Group

\The Mesothelioma Survivor, Caregiver & Family Support private Facebook group is a safe space where people often post personal stories of day-to-day challenges and milestones. Anyone struggling to cope with a mesothelioma diagnosis is welcome to join this group.

Brigham & Women’s Hospital

Brigham & Women’s Hospital offers a weekly mesothelioma support group for caregivers and family members led by social workers and chaplains. The group meets Wednesdays from 12 p.m. to 1 p.m. in the multipurpose room on the 11th floor of the hospital.

Mesothelioma Applied Research Foundation

The Meso Foundation hosts several support groups a month for patients, survivors, caregivers and loved ones. They also run several Facebook groups for people affected by mesothelioma and provide information and resources on their website.

International Mesothelioma Interest Group

The International Mesothelioma Interest Group meets every two years to share research findings, promote collaboration and discuss new treatment and research opportunities.

American Cancer Society

The American Cancer Society provides resources and support groups throughout the U.S. You may use their online search tool to locate cancer support groups and resources in your area.

I Had Cancer

Survivors can use this website to share personal experiences and reach out to another survivor with the same mesothelioma diagnosis. Long-term survivors also can mentor those who were recently diagnosed with the same disease.

Cancer Support Community

As one of the largest professionally led nonprofit cancer support networks, Cancer Support Community offers an online “Living Room” for patients to participate in online discussion boards facilitated by a licensed counselor.

Inspire

Using a series of discussion forums, Inspire offers communities based on specific disease diagnoses and treatment options. The site partners with larger organizations, such as the American Lung Association, to provide related resources in a given community discussion.

 

The Frida Center
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PAIN MANAGEMENT

 

The management of chronic pain is challenging for both patients and clinicians. However, it can be done successfully. Consumers benefit most when their health providers collaborate with other professionals ( e.g., psychologists, addiction counselors, pharmacists) and when they take on a significant role in optimal management of their pain. 

 

Consumers should discuss with their health providers treatment goals that include reducing pain, maximizing function, and improving quality of life. The best outcomes can be achieved when chronic pain management addresses co-occurring behavioral health disorders (e.g., depression, anxiety) and when it incorporates suitable nonpharmacologic and complementary therapies for symptom management. 

 

RESOURCES

 

The American Society of Anesthesiologists (ASA) is an educational, research and scientific society that works to elevate the standards of the medical practice of anesthesiology and improve patient care. Since 1905, ASA has played an important role in American medicine acting as an advocate for all patients who require anesthesia or relief from pain. ASA’s website provides information on treating chronic pain and the potential challenges of treating this condition, opioid treatment for pain management and non-opioid options for treatment.

 

 

The CDC Guidelines for Prescribing Opioids for Chronic Pain, provides resources on how to communicate with patients about the risks and benefits of opioid therapy for chronic pain, improve the safety and effectiveness of pain treatment, and reduce the risks associated with long-term opioid therapy. Download the checklist for prescribing opioids and browse additional clinical tools to help implement the recommendations. 

 

HHS’ newly released National Pain Strategy, details steps the Federal government is taking to improve provider education on pain management practices and overcome barriers to improve the quality of pain care. 

 

The PainEDU website provides numerous resources and information on managing chronic pain. Resources include a pocket guide to pain management, a client workbook and information on cross-cultural pain management.

 

The Mayo Comprehensive Pain Rehabilitation Center Program is an intensive 3-week outpatient program focused on providing multidisciplinary rehabilitative therapy to patients with chronic pain with the goal of improving quality of life and facilitating a return to regular daily activities.

 

Cognitive Therapy for Pain by Beverly E. Thorn is a paper that specifically targets the cognitive psychological processes (pain-related thoughts, attitudes, and beliefs) shown to be important predictors of satisfactory adjustment to chronic painful conditions.

 

The ECHO project done through the University of New Mexico is a telehealth project that allows providers from all over the country to get assistance for difficult pain management cases through virtual consultation with a pain management team at the UNM. This great resource for those practicing in rural areas without pain specialists for referral.

 

TIP 54: Managing Chronic Pain in Adults With or in Recovery from Substance Use Disorders equips clinicians with practical guidance and tools for treating chronic pain in adults with substance use disorders. This TIP includes information and resources on patient assessment, talking with patients about medication supply, addiction behaviors, opiod misuse measures, and pain treatment agreements. 

Group Health established a major initiative to prevent Opiod abuse and overdose and make opioid prescribing safer while improving care for patients with chronic pain.

 

Chronic Opioid Therapy Safety Guideline for Patients With Chronic Non-Cancer Pain

The Center for Practical Bioethics-Pain Action Initiative: A National Strategy (PAINS) shares podcasts, reports, and information from various national efforts to improve the treatment of individuals with chronic pain

 

Disability Issues 

 

Frequently Asked Questions: Americans with Disabilities Act | The Doctors Company

 

Tips for Using the ADA - National Fibromyalgia & Chronic Pain Association
The Americans with Disabilities Act and Fair Housing Act can provide legal rights to improved community participation for people with fibromyalgia and chronic pain. How can reasonable accommodation work for you?

Civil Rights Case Gives Hope to Pain Patients — Pain News Network


How Can I Get Reasonable Accommodations For Chronic Pain? - Pain Doctor
Working with chronic pain can be difficult, but it doesn't have to be impossible. You are entitled to certain reasonable accommodations under the ADA.

 

Is Chronic Pain a Disability? – National Pain Report

 

PAIN WITHOUT TREATMENT, WRONG WITHOUT REMEDY - doctordeluca.com - Dr. DeLuca's 

Addiction, Pain, and Public Health Website

 

Your Pain, Your Rights: Dealing With Your Physician And Your Hospital | RSDSA

 

 

PAIN IS PERSONAL

 

 

 

 

NCIL TASK FORCE LETTER TO CONGRESS: 

https://www.ncil.org/wp-content/uploads/2019/06/6-25-19-Chronic-Pain-Sign-On-Letter.pdf

 
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