Tag Archives: advocacy

Annie Lennox Publicizes Her Chronic Pain

Annie Lennox Calls For Urgent Action For Those In Chronic Pain – Annie Lennox – June 2020

This is from Ms. Lennox’ own website where she advocates for continuing services for pain patients during the COVID lockdown.

Annie Lennox has called for action over the “intolerable” suffering of chronic pain patients during lockdown.

Annie called it “indecent and inhumane to leave people to suffer”.   She was referring to the continuing closure of NHS specialist pain clinics. 

This general lack of concern for pain patients certainly is “indecent and inhumane” when we are denied effective pain relief as though it weren’t important just because we won’t die from it.  Continue reading

Congressional Letter Builder

Welcome to the Congressional Letter Builder Survey –  from “Your Voice Matters: make chronic pain visible” 2020

Here’s a good idea to help us write the letters we want to write our legislators. It leads you through a series of statements about your pain and its treatment (or lack thereof) and you can use their 5 choices of “Strongly Agree” to “Strongly Disagree”, sand/or you can write about your thoughts or experiences in the text box below each statement.

We’re so glad you’re here! You are affecting policy decisions and influencing new areas of research. Your voice matters! Your responses will be combined with others and delivered to legislators.  Submissions will be delivered on bi-monthly intervals.

To be effective, we estimate that 10,000 responses will be representative of how chronic pain affects people’s lives in the United States. Together we make a difference!   Continue reading

Proof prescriptions not fueling “opioid crisis”

Our tireless advocate, Dr. Richard Lawhern, has pointed out two recent studies which clearly show that prescriptions aren’t what’s fueling the “opioid crisis”:

1. Gabriel A Brat, Denis Agniel, Andrew Beam, Brian Yorkgitis, Mark Bicket, Mark Homer, Kathe P Fox, Daniel B Knecht, Cheryl N McMahill-Walraven, Nathan Palmer, Isaac Kohane, “Postsurgical prescriptions for opioid naive patients and association with overdose and misuse: retrospective cohort study”, BMJ 2018;360:j5790 – http://www.bmj.com/content/360/bmj.j5790.long

Brat et al investigated medical insurance records of more than 586,000 patients prescribed opioids for the first time after surgery.  

Less than 1% continued renewing their prescriptions longer than 13 weeks; 0.6% were later diagnosed with Opioid Use Disorder during follow-up periods averaging 2.6 years between 2008 and 2016.   Continue reading

Opioid Overreaction

Opioid OverreactionNYTimes.com – By David Leonhardt –  Mar 2019

I’m encouraged to see this very reasonable article in the New York Times, which has previously published some anti-opioid pieces of questionable accuracy. 

Some Americans suffering from chronic pain have recently lost access to medicines that helped them live normal lives.

Other patients have had to turn to invasive and dangerous treatments, like spinal injections. Continue reading

Just under 2 days left to comment on @HHSGov Pain Mgmt

From @TheATIPUSA comes this reminder and resource in a Twitter stream – Mar 2019

@HHSGov Pain Mgmt Best Practices Draft Document

Deadline: Monday April 1, 2019

5 pm Eastern
4 pm Central
3 pm Mountain
2 pm Pacific

https://www.federalregister.gov/documents/2018/12/31/2018-28403/request-for-public-comments-on-the-pain-management-best-practices-inter-agency-task-force-draft   Continue reading

April Fools Day – A National Day of Pain

April Fools Day – A National Day of Pain – National Pain Reportby Richard A. (“Red”) Lawhern, Ph.D – Mar 2019

I wish this effort had started sooner – maybe next year.

.April Fools Day is known around the world as a day for practical and sometimes impractical jokes.

This year, chronic pain patients, their families and their doctors can instead choose to make April 1st a day of change and protest. It can become a National Day of Pain.

The needle on public policy for treatment of pain is beginning to quiver:   Continue reading

Defining Your Story As a Patient Advocate

Defining Your Story As a Patient AdvocateBy Barby Ingle, PNN Columnist – Jan 2019

When honing your message, start with deciding what you want to talk about.

Sometimes it is important to go wide and broad when talking about chronic pain, but other times it’s important to discuss your most pressing experiences with a specific disease or challenge.

Defining the issue that’s important to you is key.

You must be able to explain your point of view and back it up with data and science that is relevant and recent.

Even though this is important, the anti-opioid zealots never present data or proof for their viewpoints, yet they are being listened to much more than pain patients. Continue reading

Pain Management Best Practices draft report toolkit

Pain Management Best Practices draft report toolkit – U.S. Pain Foundation

Comments on new federal recommendations on pain are
due April 1.

A high-ranking federal task force has released its much-anticipated draft report with recommendations for improving the management of chronic and acute pain. The public is being asked to provide feedback on the report by April 1.

In this toolkit, you’ll find information about:

  • The task force
  • The report
  • How to submit comments
  • Tips for submitting comments

Continue reading

Anger is Destructive when Expressed on Social Media

Below is a Twitter stream regarding the expression of anger and its consequences. Two of our best advocates are warning that “letting it all hang out” on social media may be counter productive.

Kate Nicholson – @speakingabtpain – Mar 2019

More people in #pain who are being tapered down or off of medication are reaching out & speaking of suicide.

I am sympathetic to the difficulty of losing access to pain medicine, but I am not a mental health professional. Some helpful thoughts from @StefanKertesz follow:   Continue reading

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome

12 ‘Taboo’ Symptoms of Ehlers-Danlos Syndrome – Yahoo News, syndicated from The Mighty – by Cassidy Colbert – Feb 2019

I’m encouraged to see this article about my specific painful genetic disorder discussed on Yahoo News, and that Yahoo News is syndicating content from The MIghty, an online publication filled with our stories.

When many people talk about Ehlers-Danlos syndrome, the symptoms they often focus on are hypermobile joints and elastic, velvety skin.

However, since EDS is a connective tissue disease (and connective tissue is found throughout most of the body), the condition can cause a plethora of other symptoms – some of which may be considered “taboo,” and can be more difficult to talk about.   Continue reading