Opioid Overreaction – NYTimes.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
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 – National Pain Report –by 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 – By 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 – 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
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 – 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
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
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.
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.