Author Archives: Zyp Czyk

About Zyp Czyk

Until I was disabled by the progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, I was a high tech IT maven at Apple and Yahoo. I live in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with my wonderfully supportive husband and two 4-legged kids. I use my remaining energy to run an informational blog about "Living with Chronic Pain from EDS & Fibromyalgia". I publish daily updates with selected excerpts of news, research, treatments, tips, support, and personal stories along with my own notes.

How Not to do Advocacy for Chronic Pain Patients

Social Media Advocacy In The Chronic Pain Community – December 1, 2018 – December 1, 2018 – Author: gamegetterII

I’m not gonna shut up because of the level of galactically stupid bullshit going on recently in the CPP community.

I wrote 5 posts about this ongoing nonsense – all are linked below – start with Part I and read them all. None are long, rambling posts, all are short and to the point.

After that, read what I’m about to write below the links.
Then actually think about all I’ve said.
Use the brain God gave you and freakin’ think.   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

Call for Retraction of Brookings Opioid “Research Roundup”

It looks like I’m not the only one upset by the severely biased report from the Brookings Institute:

Public Health Experts Call for Retraction of Brookings Institution Opioid “Research Roundup” – By Sarah Beller – Dec 2018

An article published December 7 by the Brookings Institution, a prominent Washington, DC think tank, is under fire for promoting the idea that harm reduction approaches—like syringe exchange and naloxone—may encourage “riskier opioid use” and increase rates of opioid-related deaths.

The focus of the criticism is the choice of which articles to cite—and which not to cite—by the authors of the Institution’s “research roundup.”   Continue reading

Response to Oregon’s Tapering Guidance and Tools

Response to Oregon’s Tapering Guidance and Tools – by Stephen E. Nadeau, MD – Posted by Jeffrey Fudin – Jan 2019

Dr. Nadeau agreed to share his response to The Oregon Pain Guidance Clinical Advisory Group, Tapering Workgroup*

*The Workgroup and contributors include Jane Ballantyne, Roger Chou, Paul Coelho, Ruben Halperin, Andrew Kolodny, Anna Lembke, Jim Shames, Mark Stephens, and David Tauben.

This reads like a list of the most extreme anti-opioid zealots who have been unconcerned about sentencing pain patients to misery and suicide, just to save addicted people from themselves.

Ballantyne and colleagues, in their recent article, “Tapering – Guidance and Tools” (, make the implicit assumption that tapering of opioid regimens in patients with chronic nonmalignant pain is a desirable thing.  

This assumption/misunderstanding/ignorance might be the main problem with all these restrictive “opioid policies”. While it’s true for people addicted, it’s clearly a disaster for pain patients (but that is usually ignored).   Continue reading

Nonsense about fighting the opioid epidemic

Research roundup: What does the evidence say about how to fight the opioid epidemic? – By Jennifer L. Doleac, Anita Mukherjee, and Molly Schnell – Dec 2018

This report from the highly respected Brookings Institute is a horrible setback for us because it only repeats the tired old song of doctors and patients being the cause of the supposed “opioid crisis”.

This post summarizes recent research on how to reduce opioid abuse and opioid-related mortality. What have we learned so far?

Limiting the supply of opioids while maintaining access to compassionate care for those who need the medication is a challenging balance to strike.

It goes far beyond challenging into the realm of the impossible, at least as long as government agencies believe they can solve the “overdose crisis” by making rules for medical practice.    Continue reading

Misconceptions about Opioid Abuse in Chronic Pain

Opioid Abuse in Chronic Pain — Misconceptions and Mitigation Strategies — NEJM – Nora D. Volkow, M.D. [Director of the National Institute on Drug Abuse (NIDA)], and A. Thomas McLellan, Ph.D. – Mar 2016 – free full-text article

I’m reposting this classic paper, which ironically came out the same month as the CDC Guidelines. Those guidelines showed zero understanding of the latest research and facts about opioid abuse and chronic pain that our own government is aware of.

Chronic pain not caused by cancer is among the most prevalent and debilitating medical conditions but also among the most controversial and complex to manage.

The urgency of patients’ needs, the demonstrated effectiveness of opioid analgesics for the management of acute pain, and the limited therapeutic alternatives for chronic pain have combined to produce an overreliance on opioid medications in the United States, with associated alarming increases in diversion, overdose, and addiction   Continue reading

DSM-V splits drug dependence by specific drug

With what we know about addiction these days, it makes no sense to split the “substance dependence” diagnoses into groups by the specific drug. Addiction happens when the brain habituates to a malfunction of satisfying cravings despite increasing harms.

It’s the users that become addicted and have a problem, not the substance!

Wikipedia information on DSM-5

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is the 2013 update to the Diagnostic and Statistical Manual of Mental Disorders, the taxonomic and diagnostic tool published by the American Psychiatric Association (APA).   Continue reading

Use of prescription opioids among persons with EDS

Use of prescription opioid and other drugs among a cohort of persons with Ehlers–Danlos syndrome: A retrospective study – Schubart – – American Journal of Medical Genetics Part A – Wiley Online Library – Jan 2019

The EDS specialist Clair Francomano is one of the authors of this study and gives it credibility.

Against the backdrop of increased opioid prescribing in the United States and the associated high rate of side effects, dependence, and addiction, our study examined how opioids and other medications are being used among persons with Ehlers–Danlos syndrome (EDS).   Continue reading

Anti-Nerve Growth Factor for Pain: Jun 2016

Anti-nerve growth factor in pain management: current evidence – free full-text /PMC4908933/ – Jun 2016

Although significant advancements have identified myriad potential pain targets over the past several decades, the majority of new pain pharmacotherapies have failed to come to market.

The discovery of nerve growth factor (NGF) and its interaction with tropomyosin receptor kinase A (trkA) have been well characterized asimportant mediators of pain initiation and maintenance, and pharmacotherapies targeting this pathway have the potential to be considered promising methods in the treatment of a variety of nociceptive and neuropathic pain conditions.

It’s great that they found NGF to be an important mediator of pain initiation, but what else might it be an important mediator of?   Continue reading