Saturday, May 3, 2014

"but oh, that magic feeling, nowhere to go..."

i'm boring you with another repost of the past glorious because... the title song has been circling 'round my cerebral marquee all day, being the song to which i woke.  yes, the irony -- and you know the irony rule.  

no, not "irony rules!" -- jeez.
rather: "share the irony!" -- duh.

originally published 28 february 2011, just prior to beginning ketamine subanesthetic infusions. "oh, that magic feeling, nowhere to go..." i must have had some foreboding of the proverbial k-hole to come.

I have decided not to be ashamed of my behavior today.  There's nothing to be gained from such shame.

Honestly, the reasons for my outbursts aren't clear, even to me.  Stress, pain, blahblah?  It's likely that I've maxed those accounts out long ago.  There is no further purchase to be had from tired woes.

It started in the elevator, as these things do.


No, it started promptly at 4 am -- as Fred came to bed, I rose.  Sleep hadn't put in an appearance, though I had drifted near a nightmare.  I have had nightmares for the last four or five nights -- real ones, the kind that leave you dripping with sweat, heart pounding, images runningdancingjumping left-to-right and back, fast.  My response is automatic, as much an echo as the dying scream I imagine hearing fade through the cracked bedroom door, slipping quickly around the corner into my office and hiding, crouching behind the freeform green rocking chair that Fred once said frightened him.  ("Can we get rid of that rocker?  It scares me.") (I am still so very sorry to have laughed.  He was very serious.)

The first night of mares had me shouting "I don't know where I am!" --
The second night, I queried, "What is that?" (pointing to a shadow on the ceiling)
The third night I don't remember any words, just a bunch o'guttural goo and a whistle.
Last night -- emphasis on speed -- "I-don't-think-so-I-don't-think-so..." (wherever I was, I was lost)

There's a theme.  It's facile.  Boring, even.

It's the first week off of antibiotics in a month and darned if I don't think these things are related to a resurgence of those feisty bone-smacking bacteria sorts, those pestilent punks.

So, anyway, restorative sleep continues to be a mythic thing.  As Fred faded, I shifted gears and pretended the things I did in that darkling time were important.  The kibble bowls needed scrubbing, the rosemary trimming, online bills scheduling, biscuits a gentle touch -- Nephews needed birthday checks, brothers an unexpected kind word, strange and cancered children prayers.

I finally got myself a Laughing Buddha -- it's been a lifelong desire -- and I do not fail to rub His Belly in these chiaroscuro mornings.  Dobby the Runt Cat rides my lap, leaning into the wind kicked up by this speeding wheelchair, nose raised to the unknown, looking like nothing so much as a faithful dog.  He goes eyeball-to-eyeball with the smiling Buddha and does not blink first.  He's a remarkable cat and loves these early hours.

By the way, if anyone knows how to train a cat to modulate his voice... I need suggestions.  Dobby has adopted a permanent scream that is grating, that flails strips of inner ear and takes tiny melon balls of brain matter... It's truly awful and we don't know exactly when or why it began.  He wants something, desperately, but after checking on hunger and thirst, general comfort, humidity levels, belly rubs and fanny whacks, and yes, even laser lights, we are left with what we had -- a cat that levels an intensely meaningful gaze within a strangely wizened little face, then screams.

I wanted Fred to sleep as long as possible before we had to head out for my ophthalmologist's office, a good 40 minutes of Tête de Hergé highway away. 

Two weeks ago, I reintroduced myself to the good EyeMan, I, the errant glaucoma patient having gone missing due to distraction and a lack of insurance.  Nonetheless, I kept up the eyedrop regime and kind of enjoyed the respite from appointment upon appointment. 

Of course, I was also losing vision, a distressing thing.  It turned out I have cataracts in both eyes and -- much more importantly -- out of control eye pressures, despite the medication.

So he fiddled with the eyedrop prescription and had me back today for a visual field test and another pressure check. 

To get there, of course, we rode in red, red Ruby.
As he and his colleagues are hunkered down on the eighth floor, we took the elevator up.
I don't often board elevators that are full, preferring not to risk being touched.  You'd be amazed at the number of people who think a wheelchair is an invitation to pat a shoulder (oy! always the shoulder!) or to reach down to my sorry knobby knee, all the while speaking to whomever serves as that day's Gimp Escort, because the person in the chair could not possibly have higher brain function.

But I did today.  Get on a crowded elevator -- in case you lost track of the relevant antecedent.

And sat staring into what amounted to a huge mirror as we stopped on every floor.

It wasn't that I did not recognize myself.  I'd know those small, beady, darting eyes anywhere.

But... what happened?  Where did my face go?  When was I smushed down, squashed, and caricatured as an unfinished lumpy dough, resting between rises?  Cast blame on steroids, on a cushingoid effect, on collapsing joints and bones, on a lack of regular tennis and even fewer occasions for a morning run.

So, of course, right there in the blasted reflecting elevator car, I started to cry.  Thankfully, no one noticed, we made it unperturbed to the mighty eighth floor, I had the VF test, and was escorted to an exam room, where I promptly pissed everyone off.  Last visit, I transferred easily from wheelchair to their exam chair, then watched as the nurse laughingly drove my chair into a wall.  "Ooops!  I wish I had me one of these..."

Today, I was dizzy, febrile, and had recently wept.  No question but I was staying put.  The exam chairs slide out of the way very easily and the doctor, I knew from past visits, didn't mind at all.  But the nurse pursed her badly colored lips, went "tsk tsk tsk," and then huffed and puffed her way to a gathering of nurse-types in the hall, where she proceeded to "tsk tsk tsk" with renewed vigor.

Fuck 'er, I say.

And cried while I waited for The EyeMan.

Last time, both eyes were 30, I think.  Today, 29 in the left and 31 in the right.  Actually, I might have that mixed up.  So he added another medication -- and back I will go in a month.  We've picked up right where we left off, he and I.  A regular dance.

The new drops sting and blur my vision.  I threw the package insert away when I saw the prodigious number of side effects. 

Oh, and I cried some more on the way home, but at least had recourse to a pair of dark glasses and a driver distracted by squirrelly traffic.

Thursday looms large, as do my hopes for it.  There is, I think, a psych evaluation necessary for the ketamine infusions, so I'd best quit this bursting into tears business immediately.

Once there was a way to get back home
Sleep pretty darling do not cry
And I will sing a lullabye

Golden slumbers fill your eyes
Smiles awake you when you rise
Sleep pretty darling do not cry
And I will sing a lullabye

Once there was a way to get back homeward
Once there was a way to get back home
Sleep pretty darling do not cry
And I will sing a lullabye

On CRPS: Physiotherapist Holly v. Psychiatrist Bass

A wonderful response to what amounts to a poor opinion piece.  Here is the road map to the original "personal view":

Personal View
Complex regional pain syndrome medicalises limb pain
BMJ 2014; 348 doi: (Published 28 April 2014)

The "Personal View" was proffered by:
Christopher Bass 
consultant liaison psychiatrist, 
John Radcliffe Hospital, 
Oxford OX3 9DU, UK

Psychosocial factors may be more important than biomedical ones in type 1 disorder, writes Christopher Bass... 
I am a psychiatrist who has worked in general hospitals and pain clinics since the 1970s and have assessed many patients given a diagnosis of type 1 complex regional pain syndrome (CRPS). The syndrome is often diagnosed by inexperienced junior doctors when confronted by patients with unexplained symptoms, especially pain in the hands and feet. CRPS was once called algodystrophy, then reflex sympathetic dystrophy, but by 1994 the sympathetic component was abandoned and the current term was introduced.1 CRPS is part of a larger problem in chronic pain and reflects our lack of knowledge of causal mechanisms. 
It has been my impression that increasing numbers of patients are being diagnosed with this disorder, and that incidence rates are increasing (estimates in 2007 of 50 000 new cases annually in USA).2 In my opinion excessive reliance on this so called biomedical diagnosis for these patients is misguided. How has this occurred? 
Several new diagnostic criteria have been proposed,3 but they are not sufficiently objective or reliable.4 For example, criteria such as “continuing pain that is disproportionate to … 
 [This is where you have to fork over some bucks to continue reading... Entirely your call... Sign up for the temporary 14 day free trial to BMJ... But I bet Domino's has a hell of a special, maybe some sort of Kentucky Derby celebration... And for what it is worth, I have a current balance of $22,000 in credit card bills, most of at a very acceptable short term APR, so don't get too excited, youse true friends and relatives, especially given the rest of my medical debts, not subsidized by corrupt corporate banking, but by mine feeble monthly payments, designed to confound the best of creditors!]

This is where I insert more of my personal crap, because... because..?  Come on, you know why! Because:  Whose blog is it, anyway?
Because:  I've established my bona fides in these pages.
Because:  I'm in a shitload of pain right now, such that breathing in, so crucial to establishing one's shield against shitloads of pain, hurts so much that I am questioning the value of such a dull, repetitive bodily function.  Given that, you can just eat my grits should the rude insertion of my overblown opinions get your tidy whities in a discomfiting bunch.  If you're reading my erudite blog without the girding of underwear, perhaps you're looking for THIS (every blog post containing the word "porn").

My inserted personal crap amounts to this:  BMJ is worth the money.  Yes, more so than pizza.

Okay, returning to this exchange of opinions over several topics of common disagreement among health care professionals both interested in CRPS and interested as well as INFORMED about CRPS.

Sure, the response also is opinionated, but restrained by science, and supported by it, as well. It was written [well] by: 
Janet T Holly, Physiotherapist Clinical Specialist in Pain Sciences; 
Clinical Researcher at The Ottawa Hospital Rehabilitation Centre; 
Clinical Epidemiology Program, 
The Ottawa Hospital Research Institute, 
505 Smyth Road 
Ottawa, Ontario, Canada

If I could fit her "rapid response" on a tee shirt, my holiday shopping for the year would be complete.
Maybe a custom coffee mug?  Or a very large shot glass?  En tout cas, here it is, earning the text background color of light, healing green versus the hint at purple prose given the good psychiatrist who first opined above.

It was with great interest that I read Dr. Bass’s viewpoint in BMJ. I am a physiotherapist who is a Clinical Specialist in Pain Sciences working in Canada and long have been frustrated by the impact of clinician language and behaviour on many rehabilitation diagnoses. I have 23 years working with pain patients and 5 to 6 years working with Complex Regional Pain Patients as a critical mass. I too have felt at times labels can be harmful for patients receiving adequate comprehensive care. Unlike Dr Bass however, I find the label chronic pain or non-specific pain can be just as harmful as patients are frequently told, “there is nothing I can do” or “get over it”. Both responses are inappropriate but aid to highlight that changing the label does not change the problem that Dr. Bass is trying to address. Non-specific pain does not immediately lead to proper assessment and treatment of psychosocial flags.

He is correct that there is some cause for criticism of the Budapest Criteria and those involved in the world of research of complex regional pain are striving to improve upon these. However, The Budapest Criteria do have a specificity of 0.68 and a sensitivity of 0.99. In the world of clinical diagnostic testing, there are certainly worst tests for sensitivity and specificity. Continuing pain, which is disproportionate to the inciting event, is not the sole diagnostic criteria but rather they must report both one symptom in three or more categories and one sign in two or more categories at the time of the assessment. 1

The studies he alluded to re brief immobilisation and prolonged casting of a limb producing signs and symptoms mimicking CRPS drew no definitive conclusions re causation or potential future treatment. 2,3 Rather they were an insight as to where researchers may want to direct their efforts further. It is far too early in the game to be taking two studies and drawing conclusions re causation when the neurophysiology and immunology behind CRPS is complex and still being determined.

CRPS can cause profound disability in some but not all patients. The reference he used to support psychosocial factors being a potential causative factor is for general chronic pain.

Beerthuizen et al, 2011 actually did not find psychosocial factors pre-disposed individuals to CRPS. 4 This also is only one study and as such too early to make a judgment.

There are some distinct differences in those with chronic pain versus those with CRPS and the literature should not be intertwined. One of the main principles of applying best practice principles to a population is the literature has to match the context of the population. 5 Patients with chronic low back pain do not get spontaneous swelling, cooling or heating of a body area, loss of motor initiation, trophic changes, extensive loss of sensation etc…. the two groups cannot be compared. In addition, there is a subgroup of CRPS that have pain but the biggest disabling features are the temperature changes, trophic changes and swelling, not pain. As such, the term arm ache or leg ache or non-specific arm pain does not describe the population well at all. In addition, there are treatment techniques such as graded motor imagery that have some clinical level of success for CRPS but are not so useful for chronic non-specific low back and neck pain. 6 Lumping all pain diagnoses together will limit the usefulness of matching treatments that have positive effects on the subgroups where they are successful.

I agree screening for psychosocial factors is necessary to manage any condition, not just pain conditions. The tools he mentions are good ones for depression and pain and easy to use by all clinicians in busy practices. I would add screening for sleep dysfunction as this too has a large impact on healing and pain control. Screening for depression, anxiety and sleep dysfunction was recommended by Rakesh, 2012 at the International Association for the Study of Pain Congress in Milan based on published literature. 7,8

Dr Bass makes a good point in his title that CRPS should not be medicalised. However, this holds true for any condition in medicine from pain to cardiac issues. The key to health in any domain is self-reflection and self-management with occasional interventional procedures from physicians or allied health professionals. True health is a work in progress and takes time. If we add medicalization and the usual resultant fear to any diagnosis, we disempower patients from managing their own care. Iatrogenic harm happens in all medical diagnostic groups not just pain patients. We, the entire medical community, do not cure patients. We teach them to manage the changes that aging, trauma and exposure to illnesses cause. The problem Dr. Bass wants to tackle is not the label we put on our patients but rather the lack of evidenced based knowledge of health professionals and ability at identification of psychosocial flags early on (optimally before CRPS even occurs by their general practitioner) and management of these flags. We must practice holistically not just in our areas of specialization. We also must start and continue to train incoming practitioners about the power of language, excessive diagnostic procedures and the need to be truly present with all diagnostic groups of patients. We need to let patients tell their narrative so that belief systems/fears etc... can be expressed and addressed immediately in every day non-threatening language. No one is too busy for this as we spend the time later down the line managing beliefs once they are ingrained. We also need to teach our clinicians about knowledge translation to patients, styles of learning, readiness to change and barriers to learning. Without practicing with all these tools in place we cannot demedicalise any diagnosis nor empower our patients to manage it. Changing the label only pushes the problem to a new label.

1. Harden, R. N., Bruehl, S., Perez, R. S., Birklein, F., Marinus, J., Maihofner, C., Lubenow, T., Buvanendran, A., Mackey, S., Graciosa, J., Moqilevski, M., Ramsden, C., Chont, M., Vatine, J. (2010). Validation of proposed diagnositc criteria (the "Budapest Criteria") for complex regional pain syndrome. Pain ,Aug 150, 268-274. doi:10.1016/j.pain.2010.04.030

2. Schott Gd. Complex?Regional?Pain ?Syndrome? Pract Neurol 2007;7:145-57

3. Singh HP, Davis TR. The effects of short-term dependency and immobility on skin temperature and colour in the hand. J Hand Surg Br 2006;31:611-5

4. Beerthuizwn A, Stronks DL, Huygen FJ et al. The association between psychological factors and the development of complex regional pain syndrome type 1 – a prospective multicenter study. Eur J Pain 2011; 15:971-5

5. Dartnell J, Hemming M, Collier J, Ollenschlaeger G. Putting evidence into context: some advice for guideline writers. Evid Based Nurs 2008; 11:6-8 doi:10.1136ebn.11.1.6

6.. Moseley GL: Graded motor imagery is effective for long-standing complex regional pain syndrome. Pain 108:192-198.

7. Gupta A, Silman AJ, Ray D, Morriss R, et al. (2007). The role of psychosocial factors in predicting the onset of chronic widespread pain: results from a prospective population-based study. Rheumatology 46(4):666-71.

8. Meyer-rosberg K, Kvarnstrom A, Kinnman E, Gordh T, Nordfors L-O, Kristofferson A. Peripheral neuropathic pain – a multidimensional burden for patients. EJP 5(4):379-89 doi:10.1053/eujp.2001.0259

Competing interests: None declared

Write on, Janet T Holly, Physiotherapist Clinical Specialist in Pain Sciences and Clinical Researcher at The Ottawa Hospital Rehabilitation Centre, undoubted star of the Clinical Epidemiology Program... and, apparently, skier extraordinaire. 

Friday, May 2, 2014

Denizens and Mavens: Cultural Equity

A new YouTube channel, as yet having produced two videos, and promising but one new one every other week, called HelloDenizen -- owned by the advertising agency Denizen -- caught my eye. The Mad Men and Women of Denizen declare that:

Denizen develops wide reaching, highly engaging, strategically targeted social media campaigns that generate cultural equity and guarantee high levels of engagement for your brand. 
I cannot quite figure how an ad agency, no matter its dedication to things social, "generate[s] cultural equity." If you can quite figure it, please leave me a clue.

It's been a day of high pain, including a newbie, a pain in my upper left chest that radiates through the back, in the creepy manner of a letter opener turned shiv, and also throbs under my arm pit, making me and my complaint recipients think it's likely the infection trying new tricks.  That's after ruling out a heart attack because I lived through the night.  We a bunch o'Spocks here at Marlinspike Hall.

Hence, the seeking of relief via stupid videos. It hurts to breathe in, but not out.  (I -- lax -- left out a symptom.  What?  What's that?  "Stress?"  Umm, yes, a bit.  The quotidian worry set of a Planetary Citizen, for...  "So it goes.")

Unbeknownst to this ad agency with high production standards for its tiny hamsters and burritos, I have a *thing* about the word "denizen." It pairs, like a crisp, tart apple with the butter of a superb cold chardonnay, with the word "maven."

Never underestimate a maven.

maven (n.) 1965, from Yiddish meyvn, from Hebrew mebhin, literally "one who understands." Plural is mayvinim.
Another "unbeknownst" thing:  all mavens, all mayvinim, are women.

Betcha didn't see that coming.

Just remember, the next time you are tossing the term "denizen" about with an unbecoming nonchalance, that mavens merit a mention, too.  Even just as much.  Generate a little subversive cultural equity.

denizen (n.)early 15c., from Anglo-French deinzein, from deinz "within, inside," from Late Latin deintus, from de- "from" + intus "within" (see ento-). Historically, an alien admitted to certain rights of citizenship; a naturalized citizen.

The Genius Behind CALMARE and CTTC: Meet Giuseppe "The Vulture" Marineo

I've not mentioned CALMARE in quite some time.  First, I had one of its ardent supporters ask me to please "leave me alone," and the whine rang through the writing such that I felt guilty for the poor man. Then, my disgust having reached such an acidic state, it was either fork over another $100 for stomach medication or ignore the scam, ignore the scammers, including poor Joey and his "leave me alone" [sniff, sniff].

Actually, what came first was an extraordinarily prayerful woman badgering me on YouTube -- so well known for the quality of its commentary -- when I did not praise her Lord and sign up for Calmare treatments immediately.  They cured one of her offspring, you see.  She repeated a bunch of FDA rubbish, then some VA rubbish, then plain rubbish.  Then she got personal.  Anyway.

I conducted myself with my usual bendy, bendy politeness, and watched as she moved on to praise her Lord in the comment section of other people suffering with CRPS.  It was almost as if she were paid to do it, or something.  Anyway.

CTTC is the corporate entity that markets CALMARE / Scrambler Therapy as a cure for various neuropathies, including CRPS, post-herpetic neuralgias, and the nerve pain that can be engendered by chemotherapies.  It's crucial that the public understand that CTTC does nothing but coopt the patents for various products.  CTTC sells its soul to sell, it does not have any real investment in the product, and in this case, the patients -- just in the public perception of the product, and how cheaply they can buy up patents.

In their fertilization of the advertising world with CALMARE and CALMARE-related pellets of untruth, CTTC peppers social media, patient support groups, and advertisements dressed up as pain management newsletters or health-related articles decorated as actual research.  Videos have been widely distributed, starring cured patients who tearfully recall their prior suffering state, while never documenting that state in the recordings.  The Testimonial approach to CALMARE / Scrambler Therapy duplicates the get-rich-quick late night infomercial -- in methodology as in message (tremendous, too good to believe results with no effort beyond prying loose a credit card from a tight wallet).

I have many favorite lines among the testimonialists.  Right now it's I-am-so-thankful-for-Calmare because (prepare to weep):

"I have an allergic reaction to all medications. I cannot even have chemotherapy with stage 4 cancer."

I am not without a tender heart, as I ponder all the people I have known whose bodies relished the poisons of their chemotherapies and who never had any distressing reaction to the harsh chemicals coursing through their systems, at all.

The Straight Dope message board, my source for straight dope messages, once briefly contemplated how these remarkable testimonials come to life:

User ARCHETYPE, a naive sort, starts the conversation:
Infomercial testimonials
How do they get people to so convincingly testify in those infomercials?
Some (especially the latest ab gadget or those get-rich-quick products) are scams and the thing that gets me most is how they get these people to so convincingly testify. Some infomercials even state that their testifiers are not compensated.
It boggles me in three levels:
1) You KNOW the product can never work as advertised.
Home-based businesses. After researching some of the home-based business on the net and discovering how their scams actually work and reading unfortunate purchasers' stories you know it is not as simple as "making $12,000 for a few hours of work in my spare time in my underwear."
The latest ab gadget. Losing weight involves diet and much more significant exercise, cardio, etc. than just crunching the damn machine 5 minutes a day.
2) This applies more to products that are brand new in the market (I can't think of any specific ones at this moment!). But how do they find the people who have used a certain product it for X amount of months or years when you know that this is the first time it is being advertised?
Now, I'm aware of such things as test markets but how do they market to those test markets? And how do they find people who had success with their products when it clearly cannot work and convince these people to testify for their product?
3) What's in it for these testifiers? Is it a lot of money? Aren't they afraid their friends and family might see their testimony?

So how do they get these testimonies? Are they all lying and/or are paid actors despite the disclaimers that they are not?

ARCHTYPE receives many thoughtful responses, but I think the essence of them all is best encapsulated by user T-BONHAM:

They lie. LIE.
After all, if you are ripping people off by selling them a product that does not work, why would you hesitate to lie about testimonials?
Think of the marketing of CALMARE / Scrambler Therapy as some sort of magic act.  Most such performances rely on distraction, sleight of hand, a spot light drawing the eye from the unlit area of ruse.

Most recently, I came upon a much-marketed CTTC/CALMARE/Scrambler Therapy saleswoman who has done her bit with a series of videos, and for the cream and cherry on top, she has a blog.  What's fascinating is that her blog, with scant entries over the years, never mentions her intense suffering from a "pain condition," until CALMARE enters the textual scene.  And, then, she does not mention CRPS! It's as if she and her corporate backers are afraid of being too specific.  She gives a semi-accurate description of CRPS but doesn't want to worry her readers or cause friends and family to fret by saying exactly what horrid "pain condition" is beleaguering those poor legs of hers... Good thing that her bogus treatments worked wonders, though she adds that indelible soupçon of believability by mentioning that she may have to have "booster" treatments.

Her name was Amanda, Amanda Something.  For some sick reason, whenever I look up her name, Phil Ochs' song "Miranda" * jumps my brain, and I find myself humming along with my sober researching. 

In the beginning, much was made of the inventor and original patent holder, Giuseppe Marineo.  He was called, falsely, "doctor" and "professor."  As he became more of an embarrassment, he received more in the way of money and CTTC got more in the way of "ownership" of the miracle device, so the marketing geniuses could begin to fashion the background into which he might fade.

As various gynecologists and chiropractors, stethoscopes slung rakishly about their necks, receptionists shadowing them in short white coats, took over the public face of CALMARE / Scrambler Therapy -- along with some of the strangest testimonial-givers on the planet -- the "scientist" behind the earth-shattering souped-up TENS unit was cast into oblivion.

No one bothered to answer questions relating to his claims and intentions.  

How did this machine come to be a treatment specific for intractable neuropathic pain when it began as Giuseppe Marineo's personal brand of woo, wrapped in a fake curriculum vitae, protected and obscured by Delta R&D, his "bioengineering research centre with a unique history."  Marineo's goal was apparently the creation of a device in the tradition of the Fountain of Youth, a modulated electric buzz that would retard aging at the cellular level.

Woo, woo. A quick woo primer:

Woo generally contains most of the following characteristics:

  • A simple idea that purports to be the one answer to many problems (often including diseases)
  • A "scientific-sounding" reason for how it works, but little to no actual science behind it; for example, quote mines of studies that if bent enough could be described in such a way to support it, outright misapplication of studies, or words that sound scientific but make no sense in the context they are used in
  • It involves the supernatural and paranormal (not necessarily)
  • A claim of persecution, usually perpetrated by the government or the pharmaceutical, medical, or scientific community
  • An invocation of a scientific authority
  • Prefers to use abundant testimonials over actual scientific research
  • A claim that scientists are blind to the discovery, despite attempts to alert them
  • A disdain for objective, randomized experimental controls, especially double-blind testing (which are kind of what makes epidemiology actually, y'know, work)
  • And, usually, an offer to share the knowledge for a price.
Oh, the woo you are about to muddle through!

Put on your waders, and unpack this introduction to how Marineo went from a one-man show to an incorporated one-man show with a tenuous connection to a research university.
[Delta R & D] was born out of individual research work begun in 1983 by Giuseppe Marineo, a researcher and bioengineer, who advanced theories to reformulate the concept of disease (and the corresponding treatment) from a biophysical rather than biochemical point of view. The idea was to restructure the known features of both according to the principles of thermodynamics by means of an analysis and the detailed specification of the relations between entropy, disease, repair processes and ageing.

This new approach to the interpretation of the traditional aspects of medical science makes it possible to go from a highly heuristic system to an extremely conceptual and rationalized system, which can create models of disease and treatment so sophisticated as to render the experimental results highly predictable. If the latter are in line with the predictions they automatically validate the development model.  
Furthermore, the very name of the theoretical system developed entails a natural transition from reductionist methods to systems theory which, in the present research, takes the form of a powerful working tool capable of providing adequate support for the development of therapies of practical utility.

In practice Marineo introduced into medical science the research and development criteria typical of engineering, in which the thoroughness of the preliminary theoretical work fully determines the expectations of the experimental verification of the method used. In 1987 the basic research was already sufficiently well structured to be supported by a technology capable of translating the theoretical system into a truly useful therapy.

The first experimental verifications fully confirmed the validity of the theoretical models developed and opened up concrete future prospects for the safe and non-invasive treatment of pathologies for which conventional methods had proved ineffective.
In 1998 the Italian scientific community, which had been constantly informed of all research developments, deemed the product of 15 years research to be scientifically valid, the theoretical principles and experimental data to have been clearly demonstrated and the bioethical principles regarding the respect and protection of the patient to have been respected.

In other words, the research carried out by a private individual was accepted and supported by the public authorities. It was consequently possible to begin official university and hospital studies, at the conclusion of which the first international publications were produced.

In order to support these changes, in May 1998 Delta R&D was set up, thus marking the beginning of the mature stage of this individual research endeavour. Although the original philosophy was retained, a logistical structure was now available to satisfy the new phases of development and to maintain and expand relations with the international scientific community. 

I dare you to unpack this into meaningful language reflective of actual science, or even good business.
Or this, from a website now removed, written by the great Marineo, himself:

The assumed pre-coding capacity is a more logical explanation than stochastic fluctuation (which in this case must be re-interpreted as a consistent modification of the information content per stimulus/time) the different discharge time characteristic used by the receptor for the same stimulus if this occurs in sufficiently short time intervals. In this perspective, to return to our model, the comparator?? Is the arbitrary module that sorts the information, compares it with a short-term memory and if it recognizes a stimulus similar to the preceding one, modifies the gain data and the information property which it passes on to the amplifier/attenuator (synapsis), a vital element that controls the passage/non passage of the “decoded” information stripped of spurious signals, associating it with the correct degree of intensity. Again with reference to the model, the noise and stochastic variations are separated since, in my analysis, at least some of these fluctuations actually consist of sub-information capable of modifying the learning capacity and sensitivity to the stimulus if repeated over short time intervals. If the data are reinterpreted in this sense, frequency modulated discharge sequences immediately took on a different significance when combined with the “pseudo-noise” modulation accompanying them and which became an essential element of the “primary” information. At this stage I considered that I had all the elements required to materially construct a pain scrambler (technically an information mixer), that is, a system capable of “masking” the pain signal.

Here's another, still extant (if badly translated by Google -- I apologize for my lack of skill in Italian) version of the the birth of the great regenerative process, the Scrambler Therapy.  Marineo simply MUST have a genetic link with the superb Ponce de Leon.  This comes in an English version... already cited.  It was fascinating to pick my way through the Italian, which bears little to no relation to its bastard English cousin.

In the mid 80s I completed the development of a theoretical model that interpreted on the basis of biophysical dynamics of chronic-degenerative disease processes, and more generally of an aging workforce. On the basis of this theoretical model I have subsequently developed a technology (Systems Entropy Variation Delta-S) in accordance with these principles that was potentially able to reactivate regenerative processes of tissues and organs without the use of stem cells.
In 2003, this research has received European approval for use in ambulatory and hospital liver cirrhosis. The results of phase II studies have been published in the Annals of the Academy of Sciences in New York and in other publications indexed. Despite this initial success, for reasons related to the lack of industrial sponsors, I found myself in substantial economic impossibility of progression in phase III clinical trials.
This research dissemination in the scientific community was so overcome by what I later developed the chronic pain, now known as the Scrambler Therapy ®. Contrary to what many believe, the "Scrambler Therapy ®" was born almost accidentally and indirectly from my studies on regeneration, although initially considered (sbagliandomi) only support the latter.
In particular in the field of regeneration in the late 80s I developed two lines of experimentation leading to verify if the theoretical assumptions that I had assumed were actually used in the clinic even humans. The first line of research related to cirrhosis of the liver, where the chances of success were predictably higher for most hepatic regenerative capacity of the organ.
The second line of research instead on the regeneration of nerve fibers, almost a complete utopia in those days, even if Rita Levi Montalcini had just got the Nobel (December 1986) for the discovery of 'NGF, the growth factor of nerve fibers . Inevitably occupandomi nerve injury I got in touch with what is, by definition, considered the worst form of chronic pain that is known in medicine, neuropathic, which essentially prevented the possibility to study the possibilities of regenerative nerve damage. Initially I sought the help of specialists in pain, but when I spoke of neuropathic pain were more discouraged me.
For a long time I turned to all sorts of pain specialist, seeking solutions also in acupuncture and hypnosis clinic, but the pain seemed to resist any attempt at treatment. I was about to resign myself to this situation by deciding to continue my research only on cirrhosis of the liver, where although always of limited series, I had already obtained preliminary results very encouraging, and free of the problems related to chronic pain that I met in nerve damage.
Just a few days as I was maturing this decision, an 'association of ill asked me to attend one of their meetings. I accepted, and put it back in the face of so much suffering and hopes of these people, I decided that if there was still no effective treatment for these types of pain, this does not necessarily meant that it was impossible to do so.
My knowledge of neurophysiology were already quite wide and deep, I was not so difficult to integrate with the specialized knowledge of the pathophysiology of chronic pain. Just as approfondivo this knowledge met the Gate Control theory, that is the dominant model and commonly accepted understanding of the mechanisms of pain perception. With some surprise I immediately realized that this theory was applicable only in acute pain. Conversely, I could not find at all its logical application in chronic pain, although conventionally accepted in the scientific community.
I understood that my assessment was practically heresy given the importance of this theory, the weight of scientific authors, endorsements obtained from its inception, and subsequent to the full consecration obtained after the seminal article published in Science in 1965. Then Thinking that he had missed something, I continued to deepen my studies, but most did this, the more my belief dell'inapplicabilità of this theory to chronic pain (especially neuropathic) prevailed.
I can say that it is exactly at this moment that comes Scrambler Therapy ®, because by identifying what I thought an error, I also found the way to a possible solution, which is now a clinical reality no longer experimental
About had enough?  Take a break from this thick, smarmy scientific writing and read something uplifting.

Calmare for Nobel Prize: Calmare Inventor Giuseppe Marineo is recieving some groundswell of support for a Nobel Prize this year, in the Physics, Chemistry, and Medical categories (he can only win one category) due to his invention of the Calmare medical device which cures pain without the side effects of narcotics.

Damn the limitation that keeps Giuseppe from winning in every category.  It makes a mockery of the man's work.

Or you can slog on, maybe picking up a copy of the story of his AIDS cure, available on eBay at the moment:  Dall' Altra Parte (The Other Side) for a mere 9 Euros.  There are other stories, besides his own tale, of his electromagnetic cure, notable at the time as it was being "tested" on poet Dario Belleza, and resulted in a charge of practicing medicine without a license and vaguely familiar charges of "totally inconclusive data."

Denying he had AIDS, commonplace enough for the times, Belleza told interviewers:

"The treatment was reserved for a group of five people," concludes Dario Bellezza "because the machine was not powerful enough. No one was tied to the bed, as it was written, it only used electrodes and patches to apply them."  

The electromagnetic machine, which worked through patched electrodes... WAIT!  That sounds VAGUELY familiar!  Could it have been, GASP, just an earlier version of the scrambling pain-hexer, the miraculous Calmare, now being snake-oil-marketed by Calmare?

It was further described in the press as witchcraft and charlatanism

Granted, what Marineo and the dead poet brought up in a war fought in the courts as well as the press, that people have the right to "diversity" of treatment, and to treatment considered "alternative," is a valid argument.

It's just painful to watch a vulture move from one corpse to the next, one hopeless illness to another, reaping, reaping, hopping away, with strips of flailed skin flapping from its beak, feeding itself... and divesting its prey of all humanity.

Is that over the top?  
Is it, really?

* Miranda lyrics, so that you, too, may hum along:

Do you have a problem,
Would you like someone to solve them,
Would you like someone to share in your misery?
Now, I don't know the answer, but I know a flamenco dancer
Who will dance for you if you will dance for me

Her name's Miranda
She's a Rudolph Valentino fan
And she doesn't claim to understand
She bakes brownies for the boys in the band.

Early Sunday morning
When the sermon lines are forming
And Saturday night is the memories that it gave.
She's busy in the pantry, far away from Elmer Gantry
Who is busy baking souls that he may save.
Everybody's soul but Miranda (Chorus)
The dice of death are calling
While the truck of time is falling
By the thumb stuck out on the highway of the years.
The tollgate at the turnpike is ignored by those who hitch-hike
And the Howard Johnson food is made of fear
But not Miranda 


The sun burnt skin is peeling
On the doctors who are healing
And the license plates are laughing on the car.
The pain is so exciting
And everyone's inviting
You to look upon their operation scars.
But not Miranda 


The condiments are clashing
While commercial planes are crashing
And the music of the evening is so sweet
Now fully in agreement
Oh, their feet have found the cement
And they all believe the signs are on the street
Her name's Miranda 


In the bar we're gin and scotching
While the FBI is watching
They are tape recording every other word
The bartender is bleeding
Pardon me, I just was leaving
as another clever voice repeats absurd
But not Miranda 

(repeat first verse)

© 2013 L. Ryan