it's obscenely beautiful here today.
please pause and put out peaceful, loving vibes on behalf of my brother, known in these pages, variously, as grader boob, lumpy, and the cantankerous english professor. sometimes he's grouped with his elder sibling as a "brother-unit," a term never meant to diminish the role but to leave it wide open for fresh meanings.
i don't think he is dying today, or even tomorrow, but i have felt the push and pull of things change this week, felt the unmistakable beginnings of descent.
then there's what he's allowed himself to allow -- falls, brain scans, a fatigue beyond imagining.
mostly, though, there's the fact that he set me a task. busy work that he knew would thrill me. burn him a couple more CDs, as the first one was such a hit that they listened to it on the drives to the cancer institute, singing along.
the truth will out, though, and it became clear that it is his friend, the driver of the mini cooper into which he folds his very tall frame for the torturous trips, who is really grooving to my musical production.
but i'm easy and also scared, so i will spend the rest of the day rabidly doing my teacher's bidding. he was schooled in good music by the best, and he gifted me with what he knew, and i have tried to retain those lessons, enriched with the accretions of my life.
i don't blame god, or blame anyone, or feel let down by some amiable universal source. there is comfort in our anonymity, in the finite space and energy we occupy, consume, produce.
i hope he lives out the year, having heard him reference christmas plans, but now there is elision in the discourse, and palpable entropy in the hurricane's whorl.
my brother-units are precious to me, but i know my preciosity means nothing, that we mean nothing, and that there is great beauty and comfort in that.
we have escaped the grand intent.
oh, sweet grader boob.
oh, lumpy.
© 2013 L. Ryan
Saturday, October 25, 2014
Procustean Science: Re-Gifting IVIG
Part of me doesn't even want to post this, as it is recycled material from the famous or infamous -- I cannot decide, discern -- Andreas Goebel, forever presenting IVIG as a silver bullet for CRPS. That's okay, I have seen good things come from focused scientists.
But it seems to me, the layperson with a dangerous small bit of knowledge, that repackaging a theory every few years in the pretty wrapping paper of a new context eventually makes the re-gifting exercise less one of diverse generosity and more one of desperately searching for a respectable vehicle.
In his most recent reincarnation of IVIG as cure all, Dr.Goebel blithely tosses on the rubbish heap the notion of trauma/injury/physical insult as an inciting event in CRPS. There has always been a caveat to that observation -- that many cannot recall an inciting event, that many cases of "spread" (Dear God, please give us a better and more accurate word!) occur without trauma, large or small, and so on.
Still, I'd wager that most of "us"experience onset, instances of "spread," and, according to most reports I've read of people in remission coming out of that remission, after some sort of inciting injury/insult/trauma. Call me crazy... (I'll give you a few moments.) -- Call me crazy, but trimming a disease profile so it better fits in the box you're wrapping this year... doesn't make me all a-dither about what's under the Christmas tree.
It makes me want to gift you with "Procrustes" as a middle name. Andreas Procrustes Goebel.
Dr. Goebel presents himself in the following way on various websites that deal with disease and (all) encompassing theories of immunology and auto-immune scenarios
All of my bitchiness about the window dressing aside, Dr. Goebel was kind enough to answer an email inquiring about any IVIG/immunotherapy ("immune modulating drug treatments for UNEXPLAINED chronic pain conditions"/CAPS mine, all mine) research being done in the U.S., as he is centered in the UK:
Well, time to rein myself in and give you the latest Dr. Andreas Procrustes Goebel's Bento Box for a treatment that may well have tremendous merit, despite how it may be overblown in its marketing hype. This is much easier to take than past incarnations, being constrained by the format of a clinical trial.
Longstanding complex regional pain syndrome (CRPS) is refractory to treatment with established analgesic drugs in most cases, and for many patients, alternative pain treatment approaches, such as with neuromodulation devices or rehabilitation methods, also do not work. The development of novel, effective treatment technologies is, therefore, important.
There are preliminary data suggesting that low-dose immunoglobulin treatment may significantly reduce pain from longstanding CRPS.
Methods: LIPS is a multicentre (United Kingdom), double-blind, randomised parallel group, placebo-controlled trial, designed to evaluate the efficacy, safety, and tolerability of intravenous immunoglobulin (IVIg) 0.5 g/kg plus standard treatment, versus matched placebo plus standard treatment in 108 patients with longstanding complex regional pain syndrome. Participants with moderate or severeCRPS of between 1 and 5 years duration will be randomly allocated to receive IVIg 0.5 g/kg (IntratectTM 50 g/l solution for infusion) or matching placebo administered day 1 and day 22 after randomisation, followed by two optional doses of open-label medication on day 43 after randomisation and on day 64 after randomisation.
The primary outcome is the patients'pain intensity in the IVIG group compared with the placebo group, between 6 and 42 days after randomisation. The primary trial objective is to confirm the efficacy and confidently determine the effect size of the IVIG treatment technology in this group of patients.Trial registration: ISRCTN42179756 (Registered 28 June 13).
Author: Andreas Goebel, Nicholas Shenker, Nick Padfield, Karim Shoukrey, Candida McCabe, Mick Serpell, Mark Sanders, Caroline Murphy, Amaka Ejibe, Holly Milligan, Joanna Kelly, Gareth Ambler
* LIFTED FROM A POST PUBLISHED OCT. 3, 2011:
Remember Dr. Schwartzman of Drexel University fame? I was so excited at the thought of being Philly bound, and getting to see one of the world's best in the field of CRPS. It did not work out, mostly because the rarefied air around experts makes them incapable of understanding the limitations of their own impossible schedules! That's why they have experienced gate-keepers, usually older women with cigarette-ravaged voices and an attitude. The gate-keepers get to tell all the patients to whom the expert has offered the moon that the moon is made of cheese.
© 2013 L. Ryan
But it seems to me, the layperson with a dangerous small bit of knowledge, that repackaging a theory every few years in the pretty wrapping paper of a new context eventually makes the re-gifting exercise less one of diverse generosity and more one of desperately searching for a respectable vehicle.
In his most recent reincarnation of IVIG as cure all, Dr.Goebel blithely tosses on the rubbish heap the notion of trauma/injury/physical insult as an inciting event in CRPS. There has always been a caveat to that observation -- that many cannot recall an inciting event, that many cases of "spread" (Dear God, please give us a better and more accurate word!) occur without trauma, large or small, and so on.
Still, I'd wager that most of "us"experience onset, instances of "spread," and, according to most reports I've read of people in remission coming out of that remission, after some sort of inciting injury/insult/trauma. Call me crazy... (I'll give you a few moments.) -- Call me crazy, but trimming a disease profile so it better fits in the box you're wrapping this year... doesn't make me all a-dither about what's under the Christmas tree.
It makes me want to gift you with "Procrustes" as a middle name. Andreas Procrustes Goebel.
Dr. Goebel presents himself in the following way on various websites that deal with disease and (all) encompassing theories of immunology and auto-immune scenarios
I am a senior lecturer in pain medicine at the University of Liverpool, and an honorary consultant in pain medicine at the Walton Centre NHS Trust, both in Liverpool in the United Kingdom. After receiving my medical and doctoral degrees from the University of Würzburg in Germany, I trained in anaesthesia and pain medicine first in Germany, then at the Oxford School of Anaesthesia in the United Kingdom. This was followed by further specialized pain training at University College London Hospitals, and interventional training in Notwill, Switzerland. I completed a 2-year fellowship in post-trauma immunology at Harvard Medical School in Boston. My main professional interest is with the role of the immune system in chronic pain, and immune modulating drug treatments for unexplained chronic pain conditions. I have a particular interest in a condition called ‘Complex Regional Pain Syndrome’ (CRPS).
I am a fellow of the Royal College of Anesthaesthetists, a member of the British and German Pain Societies and the International Association for the Study of Pain, and founding member of the CRPS network UK.
All of my bitchiness about the window dressing aside, Dr. Goebel was kind enough to answer an email inquiring about any IVIG/immunotherapy ("immune modulating drug treatments for UNEXPLAINED chronic pain conditions"/CAPS mine, all mine) research being done in the U.S., as he is centered in the UK:
This is all experimental at the moment. The only US group which I am aware of, who is trying immune treatments relatively systematically, is the Philadelphia group. You might wish to inquire with Dr. Lopez: Enrique.AradillasLopez@DrexelMed.edu and inquire.I have not inquired, as my experience with the staff at Drexel University's Neurology Department has been abysmal, and that's adding a dose of "sweetness and light" to the assessment.*
Well, time to rein myself in and give you the latest Dr. Andreas Procrustes Goebel's Bento Box for a treatment that may well have tremendous merit, despite how it may be overblown in its marketing hype. This is much easier to take than past incarnations, being constrained by the format of a clinical trial.
Low-dose intravenous immunoglobulin treatment for complex regional pain syndrome (LIPS): study protocol for a randomized controlled trial
Longstanding complex regional pain syndrome (CRPS) is refractory to treatment with established analgesic drugs in most cases, and for many patients, alternative pain treatment approaches, such as with neuromodulation devices or rehabilitation methods, also do not work. The development of novel, effective treatment technologies is, therefore, important.
There are preliminary data suggesting that low-dose immunoglobulin treatment may significantly reduce pain from longstanding CRPS.
Methods: LIPS is a multicentre (United Kingdom), double-blind, randomised parallel group, placebo-controlled trial, designed to evaluate the efficacy, safety, and tolerability of intravenous immunoglobulin (IVIg) 0.5 g/kg plus standard treatment, versus matched placebo plus standard treatment in 108 patients with longstanding complex regional pain syndrome. Participants with moderate or severeCRPS of between 1 and 5 years duration will be randomly allocated to receive IVIg 0.5 g/kg (IntratectTM 50 g/l solution for infusion) or matching placebo administered day 1 and day 22 after randomisation, followed by two optional doses of open-label medication on day 43 after randomisation and on day 64 after randomisation.
The primary outcome is the patients'pain intensity in the IVIG group compared with the placebo group, between 6 and 42 days after randomisation. The primary trial objective is to confirm the efficacy and confidently determine the effect size of the IVIG treatment technology in this group of patients.Trial registration: ISRCTN42179756 (Registered 28 June 13).
Author: Andreas Goebel, Nicholas Shenker, Nick Padfield, Karim Shoukrey, Candida McCabe, Mick Serpell, Mark Sanders, Caroline Murphy, Amaka Ejibe, Holly Milligan, Joanna Kelly, Gareth Ambler
* LIFTED FROM A POST PUBLISHED OCT. 3, 2011:
Remember Dr. Schwartzman of Drexel University fame? I was so excited at the thought of being Philly bound, and getting to see one of the world's best in the field of CRPS. It did not work out, mostly because the rarefied air around experts makes them incapable of understanding the limitations of their own impossible schedules! That's why they have experienced gate-keepers, usually older women with cigarette-ravaged voices and an attitude. The gate-keepers get to tell all the patients to whom the expert has offered the moon that the moon is made of cheese.
© 2013 L. Ryan
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