Tag Archives: advocacy

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

HHS Report Feedback: Recommendations

Draft Report on Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations PPM Editorial Authors of this commentary are: Richard A Lawhern, PhD and  Stephen E Nadeau, MD Feb 2019

Here is a great example of an excellent commentary on the Draft Report from the HHS. We can all use this as a template for how to organize our own comments.

The following review comments were submitted in response to the draft report, Pain Management Best Practices: Updates, Gaps, Inconsistencies, and Recommendations, published by the HHS Pain Management Best Practices Inter-Agency Task Force.

To Be Praised

I urge everyone to start with the positive to make our later criticism more palatable. We have to remember the person reading our comments and try to be what they would regard as “reasonable”. Otherwise, I fear our commentary will be left unread and disregarded.  Continue reading

Advice on Commenting to the HHS Task Force

Tell the Task Force! Advice on Commenting to the HHS Task Force on Pain Management – National Pain Report – By Richard A. (“Red”) Lawhern, Ph.D. – Jan 2019

I sympathize with anybody who may find the Task Force draft to be a tough read. The text is ~60 pages with 446 references.

That’s why I summarized it for you over 3 posts here:

This report is a very positive development for pain patients, especially because (in part 2 of my posts) it specifically rejects the CDC guidelines that have caused us so much disability, distress, and death.
Continue reading

Clampdown on Rx opioids is hurting pain patients

The clampdown on opioid prescriptions is hurting pain patients – by Kate M. Nicholson – Jan 2019

Here is another article by our great advocate, Kate Nicholson, that appeared in the Los Angeles Times – a very mainstream media outlet – where it could be seen by millions.

…at the age of 30, I was no longer able to sit or stand. I could barely walk short distances. These limitations, related to a surgical mishap, would continue for almost 20 years…

When medical advancements led to an improvement of my health, I went off opioids without incident.

Continue reading

Request for Feedback to HHS task force

Feedback to HHS | HHS.gov – HHS asking for comments on the task force report (previously covered in three parts here):

Submit through the Federal eRulemaking Portal at:
https://www.regulations.gov/document?D=HHS-OS-2018-0027-0001

(There’s a “Comment Now” button at the top right of the page)  

Continue reading

Patient-Focused Drug Development meeting with FDA

Patient-Focused Drug Development meeting with FDA – Twitter Conversation sent by Scott Gottlieb, the FDA Commissioner from:

Scott Gottlieb, M.D. @SGottliebFDA   
#FDA will be hosting a Patient-Focused Drug Development meeting July 9 to obtain patients’ perspectives on the impacts of chronic pain, views on treatment approaches and challenges or barriers to accessing treatments.

This sounds promising to me. It seems like big step forward for pain patients, for the FDA Commissioner to publicly acknowledge that we exist and that opioids are necessary for some of us… quite a daring move in today’s opiophobic political atmosphere. Continue reading

Op-Eds: How to share your story effectively

OP-EDS: SHARE YOUR STORY – From the U.S. Pain Foundation.

The US Pain Foundation has put together a guide with tips for writing Op-Eds for your local newspapers:

Chronic pain is often misunderstood and stigmatized by the general public. U.S. Pain Foundation believes that, in order to create positive change in the perception of pain, people living with chronic pain must share their stories far and wide.   Continue reading