A national Pain Crisis Protocol is imperative

There should be a pain crisis protocol for dealing with patients who present to the ER or urgent care with significant pain that is not related, or is disproportionate, to obvious pain causes (such as trauma, fractures, infections, heart attacks, organ disease, etc. — the issues that ERs are used to handling.)

The main function of the ER is to identify and stabilize conditions which pose an immediate or proximate threat to life or function. Ongoing conditions are referred to primary or specialist care for follow up.

Crises in ongoing conditions are clearly outside this realm. No wonder patients with pain flares get called drug seekers. Of course they’re seeking drugs. Their condition causes terrible pain crises at random times, often outside office hours, and their only option at those times is to go to the ER seeking the medication they genuinely need.

It puts both the ER staff and the patient in crisis into an intolerable position. A Pain Crisis Protocol, generated at the national level, could eliminate that problem almost completely.

It would provide guidance for further investigation and appropriate treatments (including patient-specific treatments) for the many pain crises that are not traumatic or otherwise obvious, such as flares of CRPS, fibromyalgia, lupus, RA, certain forms of blood dyscrasia; arthritis exacerbation; unexamined or ill-examined organ or CNS compromise; and so on — all things that do require ongoing specialist treatment and thus tend to leave ER staff ill-equipped to deal with, but which occasionally require immediate care for episodes of crisis.

It would also provide ways to move past the “you must be a drug seeker” mindset, which is prejudicial and unhelpful to all concerned. It would create useful ways to move patients out of the blame-the-patient path and into a constructive treatment path where pain gets treated as pain, addiction gets treated (not bullied or abused, but treated) as addiction, and physicians’ appropriate treatment decisions are protected from the political hysteria around the use of pain medications.

Many of these painful diseases require customized crisis management, because response to pharmaceuticals can vary so widely from one patient to another in these already fragile, destabilized systems.

Rationally, then, this would require specialists who treat people with these conditions to provide crisis-management protocols for each patient to the patient’s home ER in advance.

Since many specialists resist planning for such crises, specific guidance on this matter would lift a needlessly vicious burden from patients who suffer from diseases for which flares are an inevitable, if unpredictable, feature.

Moreover, if a patient must be admitted to an ER outside their home area, the admitting ER can retrieve the necessary patient-specific protocol from the home ER at any hour via phone and fax. Again, this would provide appropriate treatment without imperiling the patient with false, undefended, and prejudicial diagnoses or potentially criminalizing the treating physicians for using politically sensitive medication.

The Centers for Disease Control (CDC) is going through another round of tortured logic around narcotic medications and pain treatment. Never in modern history has federal policy driven so much of medical protocol. (Informed dissent would be welcome. Looking forward to being wrong about this.)

The fallout in terms of patient care has been horrific, while addicts remain less treated than ever before and doctors are so hemmed in by inappropriate limitations on care that they can be criminalized for being responsive physicians.

It’s very odd.

Nobody wins — except the professional dealers, who don’t need to follow legal processes to access their product and have a growing pool of potential customers, many with a legitimate un-met need.

So, since the CDC is now so ready to get involved in the physician-patient relationship, it may be time to do so in a constructive manner. Creating a coherent protocol for pain crisis management, which provides forward guidance for ER staff past the fatality-eliminating process, safety for patients with a legitimate need, and appropriate diagnosis with rational intervention for addicts, would be wise. The money and lives saved would pay for it in the first year, if not sooner.

Relevant links

The current CDC proposed guidelines for narcotic use in the outpatient setting: http://www.regulations.gov/#!documentDetail;D=CDC-2015-0112-0001

CDC guidelines for public comment: http://www.cdc.gov/other/public-comments.html

Selection of CDC articles on narcotic policy (opens new tab): CDC search for ‘narcotic policy’

How to contact your elected officials in the U.S. government (opens new tab): Contact your elected US officials

In politics as in medicine… Speak up, because there is no guarantee that they are paying attention to your reality.

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Teaming with other orgs? (With annotated list of online CRPS resources for patients and professionals)

One of my compatriots posed interesting questions on one of my online groups: why don’t we work with larger and better-funded orgs? Why do we have no chapter-based organizations for this disease?

I strongly suspect that there are several issues intertwining to create this lack:

  1. Until recently, this disease was so poorly understood that there were no stable diagnostic criteria, let alone a stable name. This means there was no coherent banner to gather under. Coming from over a decade in health care, most of it as an RN, I can definitely say, as a matter of practical politics, that the medical community will NOT come together over an ill-defined disease. Without the legitimacy the medical community brings, it would be mighty hard to find any major or stable funding sources for an illness. It’s pretty much impossible to get more than a passing nod from larger orgs with well-defined goals.
  2. It’s still believed to be terribly rare, but in fact it’s hideously underdiagnosed. In studies where people are followed post-injury or post-surgery by professionals trained in CRPS diagnosis, it’s been noted that 7%-18% of those patients develop CRPS, and that’s just in the studies I’ve seen while looking for other data. That’s not too darn rare at all! (Naturally, with prompt and skilled treatment, there is a high rate of remission in these early diagnoses.) This level of under-diagnosis is even more worrisome for established orgs to deal with. Doctors, when acting en masse, are conservative to the point of being reactionary, and don’t welcome uncertainty.
  3. Nobody with pull advocates for CRPS, or at least nobody with the clout to make funds follow. (Paula Abdul is not widely seen as a leader, although she has many gifts, and — sadly — MacGyver has been in reruns for years.)
  4. Only in the last 10-15 years or so has CRPS treatment been functional. Until then, the most usual process was to drug us into silence and wait for us to die, which — with care — typically took 25-30 years of progressive weakness, pain, fragility, and debility. Such a flaccid population is not interesting from the outside. Sad, but true. Therefore, we only have about a decade of CRPSers who can function and advocate and ever do anything besides just try to cope. (Only a few enlightened doctors did anything differently. Pediatric treatment led adult treatment by a couple of decades, I suspect because they had parents without CRPS insisting on functional treatments; these kids then grew up.)
  5. Due to the twinned issues of ignorance about CRPS and poor communications technology, it’s only been about 8-10 years that we have had a truly networked society of CRPSers to refer to. Many of us, who’ve had it for longer, still remember how close we came to ending it all out of sheer isolation, fear, and desperation, but now we have allies at the end of the keyboard.
  6. Last but by no means least, CRPS IS EXHAUSTING. Pain is exhausting. Weakness is exhausting. Dysautonomic responses are exhausting. A cardiovascular system that can’t quite figure out which way is up is exhausting. A brain that keeps firing false signals is exhausting. It’s just exhausting. It’s worse than a full-time job with full-time overtime and no benefits. It’s worse than medical school. Worse than law school. Worse than both combined, topped by a never-ending case of the flu and being followed around by a thug with a live cattle prod. We don’t get much of a break for other work, though by gosh, some of us sure do try!

You’ll notice that successful orgs are run by our loved ones or doctors, rarely by CRPSers themselves. It takes a whole lot of energy to run an organization. (This is why I aim for full remission in my search for a cure. I want to have the physical/physiological slack to do the work I really intend to do.)

I think we’re getting on for time to have these kinds of alliances and that kind of localizable organization. I can certainly see why it hasn’t happened until now, but the situation has changed.

There are a number of organizations that recognize CRPS as something they’ll include under their umbrellas, like the (now defunct) American Pain Foundation and Women In Pain. I wouldn’t call them alliances, because we certainly aren’t equals; at this point, we’re ugly stepchildren in the world of medical movements, because we have a disease that is hugely ignored, incredibly complex, and desperately exhausting.

However, there is a future. (There is always a future.) This future includes the fact that we are better organized than we have been until now, better informed than most providers, and can pool our efforts to accomplish far more together than any of us could do alone.

When reading this list, keep in mind, these orgs are not competitive. Each org focuses on its main mission, and does it well (unless stated otherwise, and then that is my opinion.)

It’s important to leave that struggling, pushing mentality behind; we’re all in this together, and we all have something different to bring to the table. Together, we are stronger than we are alone… At times, our self-described allies may need to be reminded of that — tactfully, of course.

The more well-run orgs there are that focus on this disease, the merrier! We need to be able, collectively, to provide many points of entry and to respond to a variety of learning styles, expectations, and needs.

As far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. While a distributed org is a great idea, up until now, it was a luxury we could not afford. Perhaps it’s time to open up and broaden our reach. (There is a Facebook group, RSD/CRPS Research and Developements, which provides striking postcards with links to current articles on CRPS to distribute to doctors, which is an important step.)

Here are the organizations I know about, and what I know about them. I’ve indicated which are CRPS specific, and which are broader orgs which admit CRPS under their umbrella. It’s not exhaustive, nor should it be. I’m including only what I think would help, and mentioning a few that won’t in order to point out what qualities to be wary of.

CRPS org: Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)

This is probably the most famous of the CRPS online resources, although it still uses the deprecated name, RSD (see Point 1 above.)

RSDSA is driven by physicians and archivists. They are a clearinghouse for medical information and conventional diagnostic and procedural issues. They’re highly reputable in that area, and they don’t even try to do anything beyond that. They provide funding to update CRPS diagnostic criteria as medical understanding of the disease improves.

Great place for medical articles about CRPS to take to the doctor, and essays to help you have some idea what to expect.

CRPS org: CRPS org: American RSD Hope

The people behind this site clearly work hard on developing and maintaining content. In a field as fast-moving as neurologic anything, this is pretty impressive. Their drop-down menus are excellent, and the material they cover is exhaustive. They do a generally good job of being fair and discussing all sides of a topic with reason and clarity. One of the founders has had CRPS for roughly 40 years, which blows me away.

While RSDSA is good for things to throw at your doctor, RSD Hope is a good place to spend time for yourself and with family and friends. Highly recommended.

CRPS org: CRPS UK Clinical Research Network

This is a research collaboration between a number of United Kingdom National Health Service Trusts and British universities, including Cambridge and Southampton. The medical pedigree is nearly bullet-proof.

They are heavily oriented towards professionals, except for the part about recruiting patients for studies. They only have about 300 enrollees, so if you’re a Briton with CRPS interested in participating in a study (not just meds, but demographic and behavioral studies too, including a current study on relationships between partners when one has CRPS) then do contact them.

CRPS org: Complex Regional Pain Syndrome – New Zealand

Patient-run website, with a Links page including treatment centers in NZ and online support groups for New Zealanders. There are videos of several CRPSers, so for those who benefit from that, it’s perfect.

Caveat Emptor: We’re about to get into wobbly territory. Proceed with caution.

CRPS org: International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation

This is run by a physician in Florida who specializes in high-dose ketamine infusions. Much of the site is devoted to flames against those who disagree with his views.

The diagnostic criteria he lists are 12 years old. The intellectual and emotional biases in the site are too blatant and bitter for me to recommend the site generally. If you’re already committed to high-dose ketamine, then the videos may be useful.

Now, let’s look at some organizations that seem to make room for CRPS under a wider umbrella of relevant issues. If any CRPS org or individual were to approach them, it seems like the very first thing we’d need to do (with the exception of the first on this list) is let them know what the disease really is.

Umbrella: USC Center for Pain

My excellent doctor at USC is also head of USC’s Pain Center. The Pain Center is a charitable org which has an annual walk/run/roll in October called Quench the Fire (http://www.quenchthefirerun.org/). I hear it’s good fun, but it’s too early in the morning for my dysautonomia. There is info on the disease and they are working on a study about how the way we talk about pain affects how others see us. Send your friends and family over — better yet, send your enemies and detractors, because they’ll come off looking terrible but yielding good info about how they think: http://painnarratives.adamswenson.net/index.php

The org is credible and informative, but its brief is somewhat limited and its physical location is highly local.

Dr. Steven Richeimer has a video of his hour-long presentation on CRPS for medical students at http://keckmedia.usc.edu/Mediasite/Play/8d9f15df5f2e4cc59278a0d14ed5cf791d

Umbrella: American Foundation for Pain (AFP) — neutralized

The AFP was well known, was reputable despite/because of close ties to the pharmaceutical industry, and had solid contact with legislators, which it used to advocate for better treatment, more funding for treatment, and less in the way of punitive actions against prescribers. This has been confirmed in a tragic way, because they were thrown to the wolves over the last round of legislation against narcotics.

It went like this… Rather than holding the drug companies responsible for releasing misleading info, this org was scapegoated and had its funding pulled, because it got 90% of its info, and funding, from pharma — as does any congress-critter you care to name… so the politicians could act self-righteously shrill about narcotic abuse, without actually doing anything that costs the industry. That’s American politics. The companies are untouched; the charity gets rubbed out.

Meanwhile, there is no more funding for addiction treatment than there was before, which would be a rational and proven approach to the problem. And yet, there is less treatment for pain, because those of us in chronic pain who have flare-ups requiring emergency treatment “fit the criteria for drug-seeking behavior” and this wrongheaded approach has criminalized patients. [NB: Of course we’re seeking drugs! We go to the ER when we really need them! That’s appropriate!]

Lesson learned: I now lean away from American sources that are too close to legislators, even though the American science is so good, and is so depended on by governments and orgs around the world. American politics is toxic for the chronically ill, as are British politics now.

Umbrella: American Pain Association

Provides physician training and certification courses on chronic pain. Very corporate in its approach.

Umbrella: National Organization for Rare Diseases

Very helpful charitable site with info on state-by-state insurance, help with bills, legislation, medical summits, professional training, and support for patient organizations. Sadly, they still use the term Reflex Sympathetic Dystrophe and include CRPS as an alias, the only CRPS/RSD org they recognize is RSDSA (no surprise there — the director is incredibly good at networking), and — most problematic of all — specifically describes CRPS as simply a disorder of the sympathetic nervous system. Wrong, wrong, wrong. The first word of the current name is “Complex” for a reason.

If anyone would like to approach them with updates and information, please do. Given the link to RSDSA, you’d think this had been done already, but hey, look at *their* name…

Umbrella: Women in Pain

Women In Pain has episodic successes with legislation and a photogenic public face (a real asset), so they are certainly worth a look. They they list articles regarding women in pain, list resources for pain and for women’s health, have an online guide for approaching your state government and other intimidating bodies to make a point, and they have done some work on legislation.

Umbrella: NIH National Institute of Neurological Disorders and Stroke

This is funded by the U.S. federal government and, in this pro-science administration, is doing pretty well. It is primarily a research organization and a clearing house for information, with the specific task of translating research into usable treatments.

Their description of CRPS is not bad, although it focuses on peripheral symptomatology and changes, with no reference to the central nervous system issues or core, organ, or metabolic issues. They also have the outdated idea that kids under 5 don’t get it.

Umbrella: American Chronic Pain Association

I mention this because it’s an obvious choice, not because I think it’s a good point of entry. Says it includes CRPS, but some of the basic materials completely ignore neuropathic/neurogenic pain. The site reads like it was written by a hospital administrator, and their info for professionals was posted in 2007 — and apparently never looked at again.

This might be a good org to approach with updated info and better integration, if anyone is interested in contacting them and creating an ongoing dialogue. I have no idea if that would go well, but it may be worth trying by someone more diplomatic than I am.

A note on how old the info should be

Be deeply suspicious of older protocols or professional training tools, with CRPS. The most recent, reputable, international diagnostic guidelines are from 2013, funded by the RSDSA. (Full text here: http://onlinelibrary.wiley.com/doi/10.1111/pme.12033/full .) The IASP criteria, which are widely accepted at least partly because they are sufficiently vague and old as to let the insurance companies opt out of paying for a lot of effective treatments, date to 1994; the RSDSA has channeled funding for periodic updates, of which the “Budapest criteria” from 2003 is the most famous, but they are not necessarily accepted by insurers or providers.

A note on faith-based orgs

My focus is relentlessly secular and heavily scientific in searching for info and support sites. This is partly due to the cultural cross-compatibility of science in medicine, which is key, and perhaps partly due to an idyllic childhood in a region that’s now so torn up with religious strife that it’s hard for me not to see a long-term agenda lurking under every burning bush. I’m not equipped to evaluate faith-based orgs.

However, for those with religious or spiritual leanings one way or another, there is generally an org to be found which supports people in pain or with chronic illness (if not with CRPS particularly) and which follows your particular path. If that helps you, I suggest you look into it, whatever your faith, and please link faith-based orgs which provide solid, useful information in the comments below.

I can say, with absolute certainty, that there is tremendous value to having a strong inward life — whatever you call it, and whatever form it takes.

A note on Anglo-centricity

You’ll have noticed that these are all English-language sites. I don’t have sufficient command of any other language to assess sites in other languages. I’d appreciate suggestions, ladies and gentlemen.

As yet, as far as I know, there is no decentralized, patient-run organization which provides a blueprint for opening chapters and simplifying the work of educating and informing local citizens, providers, news outlets, and legislators. Who would like to start putting one together? I’ll help, but I’m working on this publishing and online art project…

Diagnostic guidelines for different countries

US

IASP-derived guidelines used as the basis of payment and treatment are available to physicians and insurance adjusters, but not patients or the public. I can’t find them online for free. (Now what does that tell you…?)
Complex Regional Pain Syndrome: Practical Diagnostic and Treatment Guidelines, 4th Edition
http://rsds.org/pdfsall/CRPS-guidlines-4th-ed-2013-PM.pdf

UK

Dated 12/2011, due for revision in 2016:
Diagnosis and management in adults: Concise guideline
https://www.rcplondon.ac.uk/resources/complex-regional-pain-syndrome-guidelines

Netherlands

Available in Dutch and English, with a version for professionals and a version for patients, dated 2006: http://pdver.atcomputing.nl/english.html
Bonus material here: a 5-language foldout card with very basic info (from their guidelines) for emergency treatment:
http://pdver.atcomputing.nl/sos_pages_en.html

Japan

In 2010, the Japanese published a refinement of the IASP diagnostic criteria that better served the Japanese demographic. The paper describing these refinements is available for purchase here:
http://www.painjournalonline.com/article/S0304-3959%2810%2900182-X/abstract

Korea

I looked for specific criteria used in Korea, where a lot of active research is being done on diagnosis (thermography, scintigraphy), characteristics (HPA axis and affective/social changes) and treatment (temporary immune shutdown), but they seem to rely on the Budapest criteria, established in 2003. These are considerably more useful than the original, rather loose IASP criteria, and have been the basis for every revision of the diagnostic criteria since. There have been several revisions; the most recent was in 2013.
A Korean patient site is here: http://www.crps.co.kr/web/index.php

I looked for diagnostic criteria specific to other countries, but my language and my search tools aren’t good enough to find them, if they exist.

For better or worse, English is the common language of medical science training and practice over much of the world. This makes it easier for Anglophones to find the information they need, but it presents a real problem for those who have trouble with such a strange and wordy language.

Links list

Organizations, in the order listed:

  1. Reflex Sympathetic Dystrophe Syndrome Association (RSDSA)

    http://rsds.org/index2.html

  2. American RSD Hope

    http://www.rsdhope.org

  3. CRPS UK Clinical Research Network

    http://www.crpsnetworkuk.org/index.php

  4. Complex Regional Pain Syndrome – New Zealand

    http://crps-nz.org

  5. International Research Foundation for RSD/CRPS, a.k.a. International Foundation for CRPS & RSD, a.k.a. RSD Foundation

    http://www.rsdfoundation.org/crps.html

  6. USC’s Pain Center

    http://helpforpain.com

  7. American Pain Association

    http://www.painassociation.org/

  8. National Organization for Rare Diseases

    http://www.rarediseases.org/

  9. Women in Pain

    http://www.forgrace.org/women/in/pain_home/

  10. NIH National Institute of Neurological Disorders and Stroke

    http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

  11. American Chronic Pain Association

    http://www.theacpa.org/

Diagnostic guidelines:

Bonus links:

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Numeracy: The educational gift that keeps on giving?

This is about what we used to call numeric literacy:

http://www.sciencedaily.com/releases/2012/02/120210133346.htm#.TzdCY4vl1xg.mailto

I have problems with using the word “numeracy” to mean “numeric literacy”, but I can adapt. To me, the word “numeracy” means “of or relating to numbers”; therefore, to be numerate means to be of or relating to numbers, and that doesn’t make sense. 

This spasm of reflexive linguistic conservatism will pass and then we can get to the point…

Numeric literacy (however you name it) results in better decisions. Those who are numerically literate are better able to understand information that’s represented by quantities and numbers, and not be confused by sloppy descriptions and poor representations. They have better outcomes in health care, work and other areas where decision-making really pays off. 

The fun part is, that this article’s writer makes the point that the spin doctors are gonna pounce on this, as if they haven’t already:

This has implications for how policy makers and others should communicate about the risks of medicines, earthquakes, climate change, and the stock market.”

Caveat emptor, from here on out!

Make your decisions emotionally if you must, but get the data first, so at least you can really see what you’re risking. 


Then, remember your fifth grade math and see how the numbers add up. (The kinds of statistics that get published in the news rarely require anything more, so don’t let the math intimidate you.) That intellectual integrity can save your life. 
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Scott Reuben and the poison in medicine’s well

In a stunning piece of timing after yesterday’s epiphany, this crossed my wire today:

“A Medical Madoff: Anesthesiologist Faked Data in 21 Studies” – Scientific American
http://www.scientificamerican.com/article.cfm?id=a-medical-madoff-anesthestesiologist-faked-data

“Beginning in 2000, Reuben, in his now-discredited research, attempted to convince orthopedic surgeons to shift from the first generation of nonsteroidal anti-inflammatory drugs (NSAIDs) to the newer, proprietary COX2 inhibitors, such as Vioxx, Celebrex, and Pfizer’s Bextra (valdecoxib). He claimed that using such drugs in combination with the Pfizer anticonvulsant Neurontin (gabapentin), and later Lyrica (pregabalin), prior to and during surgery could be effective in decreasing postoperative pain and reduce the use of addictive painkillers, such as morphine, during recovery. A 2007 editorial in Anesthesia & Analgesia stated that Reuben had been at the “forefront of redesigning pain management protocols” through his “carefully planned” and “meticulously documented” studies.”

More from the New York Times:
“Doctor’s Pain Studies Were Fabricated, Hospital Says”
http://www.nytimes.com/2009/03/11/health/research/11pain.html

And the Injury Board:
“The Fake Clinical Trials of Dr. Scott Reuben” http://cherryhill.injuryboard.com/fda-and-prescription-drugs/the-fake-clinical-trials-of-dr-scott-reuben.aspx?googleid=259290

It’s hard to convey the total horror of the event described here. This physician scientist, who ran the pain clinic at one of my old hospitals, published research that became the cornerstone of pain treatment in the US and abroad. After 13 years of successful, peer-review-published, desperately important work, he recently admitted the following:

• Not one single patient was ever enrolled in key studies.
• There was absolutely no basis for the numbers he cited; he invented them.
• He was paid a great deal of money to come up with certain results, and that is exactly what he did.

The most influential part of his career was a fraud.

The countless studies founded on his widely-publicized fictions are therefore meaningless, under the rules of scientific evidence itself.

The degree to which we depend on medical science to save us when we really need it — our helplessness at our times of greatest need — require us to have some faith in the processes that deliver our care. This isn’t just another massive fraud, it’s a devastating blow to the cornerstone of healing in the modern age. How can educated patients ever continue to believe that our doctors have anything of value to offer us? How can honest physicians bear to let this situation exist?

He could not have chosen a worse field to work in. In medicine, sooner or later, every field has to rely on pain medicine, and he has fouled the well from which the widest number of patients must drink. Scientific American got it wrong: Madoff was a piker, next to this.

The science of pain control and pain management has depended heavily on garbage cooked by a liar, served by intellectual catamites and eaten by the brainwashed. From there, it was inserted into me and mine, who were assured that this was the best that medical science had to offer.

Too bad there was no actual medical science involved.

…I apologize for the strong language. Can you think of more precise and telling terms to use instead? I’d be happy to change them, if anyone can come up with something better.

There are administrative questions such as, whatever happened to peer-review? Who the hell was looking at his notebooks and other physical evidence of scientific work? Why did it take 13 years for a “routine check” at Baystate to break his cover? What on earth were the most important science editors in the world thinking? How many of them are still employed — and why?

Those aren’t trivial, but they are not what looms largest in my mind. I think of Debbie, and me these past few years, and other friends I can’t name whose lives have been hopelessly distorted and sometimes horribly lost … because modern pain research has been built on one psychopath’s lies, which were funded and supported by a vast network of fellow liars, colluders, and the willfully blind.

It has sometimes occurred to me that the wrong people get sick.

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Refocus on what works: In memoriam

Debbie died yesterday. She was a never-failing source of encouragement and intelligent support on one of my key online CRPS support groups.

She died on the table, while undergoing a medical procedure. I don’t know exactly what it was, and given my respect for patient confidentiality, it’s none of my business.

She’s the first person to die of my disease, to whom I felt personally attached. Needless to say, it’s sobering as hell.

I’ve written about the need to attribute deaths from this disease correctly. I’m preparing my own final papers. These thoughts are nothing new.

But today, they are biting deep.

I’ve recently become highly politicized over rights abuses and intolerable corporate stature in my country. I have privately — and quietly — become convinced that the US healthcare system is so completely predatory, so opposed to its own mandate, that it will never offer healing for anyone in my position.

Debbie’s death has broken through my professional anxiety about appearing detached and scientifically sound. I have, at long last, become politicized about the most important subject in my life, after 25 years of personal and professional involvement up to my back teeth.

I have minimized my discussion here of what actually works. That dishonest omission has done us all a great disservice. I’m going to discuss what works, whether or not it’s FDA approved, pharmaceutically profitable, or adequately studied.

Medical studies are a shining example of the fact that we inspect what we expect, not necessarily what we need. The fact that studies have not been done on most modalities, or not rigorously done in double-blind experiments, doesn’t mean the modalities don’t work.

It means the studies need to be done. Period.

Where I understand the mechanisms of action, I will explain them. Where studies don’t exist, I’ll detail what should probably be explored.

But I have had enough of silence. I will not die as Debbie did. I will not die on the table. I certainly will not die saturated with soul-destroying pharmaceutical-grade poisons, as so many of us do.

I will find a better way. I will find a way that works. I’ll do my best to persuade others to study the modalities involved, and to fund the studies. My legislators will learn to recognize my name on sight, because their slavish debt to the pharmaceutical industry is absolutely intolerable and it’s up to me, and others like me, to convince them of that.

I wish Debbie a painless and peaceful rest. I hope her extraordinary husband finds enough strength and comfort to manage life without her.

For myself, I want the intelligence, resources and strength to find a solid cure, make it happen, and spread the word.

No more silence. It’s too much like consent or, worse, collusion.

I do not consent to the deaths of my friends.

With my eyes now open, I’ll no longer collude.

Let’s find a real way out.

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