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re: pacing treatment . . .
This chart / table shows something interesting regarding pacer . . . :
[url=*** - Google Drive[/url] Note except for the first period, fewer surgical patients died in the studies than non-surgical patients . . . were the studies 'frontloaded' with hospice patients? ". . . Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live . . . " What Are Palliative Care and Hospice Care? | National Institute on Aging more detail soon.:confused: |
Quote:
(I do not know why the link didn't show correctly?) . . . try again. |
Web page showing Hospice means no clinical trials
Web page showing Hospice means no clinical trials:
Advantages and Disadvantages of Hospice Care (disadvantages section) |
The specific clause:
"Participation in experimental treatments or clinical trials is not allowed because they are considered life-prolonging. In addition, other treatments or procedures considered life-prolonging nasogastric or "feeding" tube, might not be covered.5 Center for Hospice Care. Feeding, hydration, and hospice care." |
Beef, there is no table or chart in the linked article. Is there a link WITHIN the article that would bring me to the table/chart?
-rb |
The table's link is in the 10:11am post, rather than the article. It seems to be operational.
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ALS 101 note
Good introductory research papers regarding Amyotrophic Lateral Sclerosis . . . relatively easy to read, many patients would likely understand and learn a lot from them.
Noah Lechtzin, August 2006 Respiratory Effects of Amyotrophic Lateral Sclerosis: Problems and Solutions | Respiratory Care (rcjournal.com) Adriano Chiò, et alia, Oct-Dec 2009 Prognostic factors in ALS: A critical review - PubMed |
Respiratory Effects of Amyotrophic Lateral Sclerosis: Problems and Solutions
Respiratory Effects of Amyotrophic Lateral Sclerosis: Problems and Solutions
https://rc.rcjournal.com/content/51/8/871.short The 'internet' is giving me very hard time getting these simple journal paper references and narrow comments posted . . . Two other journal papers ought be mentioned: DiPALS (Sheffield) {free} Just a moment... RespiStimALS (Paris) {maybe $49, is available in some medical libraries} Just a moment... |
okay. so both of those studies you linked to suggest diaphragm pacing is NOT BENEFICIAL. Did you find these results surprising?
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fuller set of reports and research status brief . . . :
06 December 2008
Onders, RP, et alia Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients Complete worldwide operative experience in laparoscopic diaphragm pacing: results and differences in spinal cord injured patients and amyotrophic lateral sclerosis patients - PubMed March, 2009 {$31.50?} Onders, RP, et alia Amyotrophic lateral sclerosis: the Midwestern surgical experience with the diaphragm pacing stimulation system shows that general anesthesia can be safely performed Amyotrophic lateral sclerosis: the Midwestern surgical experience with the diaphragm pacing stimulation system shows that general anesthesia can be safely performed - PubMed 24 October 2011 Gonzalez-Bermejo, J, et alia Diaphragm pacing improves sleep in patients with amyotrophic lateral sclerosis - PubMed 28 September 2011 Humanitarian Device Exemption (HDE) H100006 United States Food and Drug Administration Humanitarian Device Exemption (HDE) remains active to this day . . . The study reports, above, show implied efficacy due improved patient survival medians . . . the following reports shows electromyogram intel reflecting synaptic reactivation subsequent to stimulation: March 2015 {$31.50?} Onders, RP, et alia Identification of unexpected respiratory abnormalities in patients with amyotrophic lateral sclerosis through electromyographic analysis using intramuscular electrodes implanted for therapeutic diaphragmatic pacing Identification of unexpected respiratory abnormalities in patients with amyotrophic lateral sclerosis through electromyographic analysis using intramuscular electrodes implanted for therapeutic diaphragmatic pacing - PubMed . . . which leads us to 'lunatic ridge . . .' in the frontier of Amyotrophic Lateral Sclerosis. And the table again: https://tinyurl.com/ResapiD shows slowing of deaths for surgical cohorts but increasing deaths for NiV cohort . . . in other words, after the bad start, even these studies developed affirming evidence of benefit . . . contravening the seeming adverse studies . . . leading to the question of what happened? The hospice issue shows many ineligible candidates were admitted to the study . . . but not why the same happened. Such is what I am working on in the present moment . . . . The rare new case disclosures suggest patients are needlessly dying and scientific research is slowing . . . I am trying to correct the problems. |
further references
Czapliński Adam, als 16484652
Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population - PubMed (nih.gov) New sensor uses MRI to detect light deep in the brain New sensor uses MRI to detect light deep in the brain | MIT News | Massachusetts Institute of Technology Should have included these in previous reference posts . . . . |
2005
Adam Czaplinski, et alia Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population Forced vital capacity (FVC) as an indicator of survival and disease progression in an ALS clinic population - PubMed n=1034 December 22, 2022 Alan Jasanoff, et alia New sensor uses MRI to detect light deep in the brain New sensor uses MRI to detect light deep in the brain | MIT News | Massachusetts Institute of Technology Mapping light distribution in tissue by using MRI-detectable photosensitive liposomes Mapping light distribution in tissue by using MRI-detectable photosensitive liposomes - PubMed for whatever reason, the url's did not copy correctly in the previous post . . . the paper titles are there and can be used with search; however, these urls ought to get you to the journal paper itself directly. |
Vitamin E intake and risk of amyotrophic lateral sclerosis
alpha-tocopherol (α-tocopherol) is in
Vitamin E intake and risk of amyotrophic lateral sclerosis Just a moment... and is the only known substance showing statistically significant preventative affect of Amyotrophic Lateral Sclerosis, per above paper. The authors discovered individuals who took Vitamin E supplements reduced their risk of developing Amyotrophic Lateral Sclerosis more than fifty percent AFTER about ten years. Several clinical studies tried detecting this effect but found no significant benefit in period (way too short to discover) . . . period was a couple of years. |
The arena of an axon
The arena of an axon
Researchers try piecing together intel until a complete picture of the syndrome's etiology is developed. The earliest clinical evidence is not necessarily the original event! But, in the case of Amyotrophic Lateral Sclerosis, the first apparent event by most authors' reports is the disconnect of an axon from a muscle fiber. This is unlikely the actual first event because such disconnects happen naturally (or by injury) and possibly by necessity. The Average Life Span of Skeletal Muscle Cells (seattlepi.com) https://tinyurl.com/MuscleFiberLifeSpan Thus a neuron's axon must find a way to connect a new muscle fiber (or reconnect an existing one). One of the amazing features occurring at the end of a neuron's axon is the build of a growth cone, which is a primary agent in the build of a synapse. Synapses are very small, estimated at around thirty nanometers: Size of synaptic cleft - Human Homo sapiens - BNID 108451 Once a neuron's axon's growth cone reaches a location where a synapse could be built, it will literally try building another one . . . these are some of the 'agents' who work on the problem: Growth cone - Wikipedia Filopodia - Wikipedia Lamellipodium - Wikipedia If successful, the muscle fiber will become responsive to stimulation and contribute to the force the muscle produces. |
imaging of actual axon growth cone . . .
This brief video shows the advance of an axon growth cone . . .
Live imaging of an axon growth cone - YouTube . . . components of the axon are so small they are beyond what can be seen. |
The Growth Cone Cytoskeleton in Axon Outgrowth and Guidance
Some time ago I commented cells move around inside by 'walking on stilts . . . ,'
filopodia and lamellipodia are reflective of the stilt like structures facilitating the moment of new cells possibly into the space prior cells failed. This paper reviews the processes in great detail . . . : The Growth Cone Cytoskeleton in Axon Outgrowth and Guidance The growth cone cytoskeleton in axon outgrowth and guidance - PubMed I would not be surprised many non-biologists would find this paper (and some of the others) more difficult to follow. A key point however, is why are the DiPALS results of 31 moons not seen as very different from the RespiStimALS result of 56 moons? A twenty-five moon difference ought not be overlooked. One big difference between the RespiStimALS study and the DiPALS study is the DiPALS study is the only one not 'blinded,' rather the study was open . . . exposed. The primary point of double blind placebo controlled studies is the prevention of tampering . . . no one can tamper with such studies because no one knows who is getting what. Such was not true in the DiPALS study. |
Chinese man praised for taking care of disabled mom every day since he was 10 years o
Chinese man praised for taking care of disabled mom every day since he was 10 years old
Chinese man praised for taking care of disabled mom every day since he was 10 years old Twelve years with ALS in China . . . |
re: ". . . anything and exciting out there in the field artificial respiration? . . .
re: ". . . anything and exciting out there in the field artificial respiration? . . ."
Well, ECMO (Extracorporeal membrane oxygenation - Wikipedia) is new but its use is unprecedented in Amyotrophic Lateral Sclerosis and the iron lung is old but I do not believe its use was ever contemplated in this context, its consideration would be new: indeed there may only be one individual left on an iron lung. re: the pacer, the main new observation is the large inclusion of 'ineligible' patients in the DiPALS and RespiStimALS studies, which report I continue working on. My outline is nearly perfected. |
An odd caveat
Another critical flaw in the DiPALS report . . . long the bane of Amyotrophic Lateral Sclerosis patients: being counted as dead because they went on the ventilator . . . arguably sensible when, absent their vent, the patient would die almost immediately. In cases of the pacer however, this issue was moot because there is evidence of therapeutic value due the pacer use. The DiPALS study appears similarly in the extreme . . . their patients were counted as dead simply because they left the study. There were eight such patients in the pacing group before six months were reached, five were not even implanted but they were none the less treated as dead (even though alive) thereby the pacing cohort was the subject of an extreme handicap. The DiPALS researchers questioned the validity of the US FDA approval on the grounds of the absence of Randomized Controlled Trial but RespiStimALS also did a Randomized Controlled Trial with their study abending as the patients nearly reached the level of the patients in the studies the US FDA based their pacer approval on. The DiPALS study and the RespiStimALS study themselves are not in agreement with each other, even though in principle, they should be. I don't know why this is not pointed out by others?
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Is the DiPALS trial a 'false negative?" Is it even a negative?
The data itself in the RespiStimALS trial does indicate, as near as I can tell, a need for the RespiStimALS trial termination; instead the trial ended because the DiPALS trial problems, which possibly an indication of an undetected risk. Quite a lot of time has passed with no particular case injury reported. There is a new trial posted regarding the pacer.
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Quote:
The data itself in the RespiStimALS trial does NOT indicate, as near as I can tell, a need for the RespiStimALS trial termination; instead the trial ended because the DiPALS trial problems, which possibly an indication of an undetected risk. Quite a lot of time has passed with no particular case injury reported. |
Taking a break for Happy Turkey Day
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long post with holiday message . . .
So the Holiday Seasons are on, . . . may you break on through (- - -> Easter)
Break on Through (to the other side) The Doors - Break On Through (To The Other Side) - YouTube You know the day destroys the night Night divides the day Tried to run Tried to hide Break on through to the other side Break on through to the other side Break on through to the other side, yeah We chased our pleasures here Dug our treasures there But can you still recall The time we cried? Break on through to the other side Break on through to the other side Yeah Come on, yeah Everybody loves my baby Everybody loves my baby She get She get She get She get high I found an island in your arms Country in your eyes Arms that chain us Eyes that lie Break on through to the other side Break on through to the other side Break on through, oww Oh, yeah Made the scene Week to week Day to day Hour to hour The gate is straight Deep and wide Break on through to the other side Break on through to the other side Break on through Break on through Break on through Break on through Yeah, yeah, yeah, yeah Yeah, yeah, yeah, yeah, yeah Presently, I am contemplating suggesting patients avoid weighing the DiPALS results because the reports are insufficiently detailed for readers to draw conclusions on their own and have many intrinsic conflicts. DiPALS does not contemplate how the variance "Open Label" from the 'traditional' double blind placebo controlled study may have influenced the results at all, much less adequately. Blinding in clinical studies prevents tampering by any entity: the DiPALS "Open Label" approach vastly exposed the research process to external influence and may have produced the results DiPALS regards unhappily. Independent review is constructively disallowed thereby and readers constrained for 'DiPALS word' on the significance of the results. While everyone has a right to their own opinion(s) scientific examination is not provided with such liberty; rather scientific discourse respects the data acquired when offering interpolations thereof weighing hypotheses' validity. In the DiPALS litmus cohort, seven patients prematurely left the study before one year was out; about twenty percent of patients in an ordinary cohort are expected to survive beyond five years (ten percent ten years and five percent twenty years), thus seven or eight patients of a thirty-seven count cohort ought exceed five years . . . instead seven prematurely left (and were thereafter computed as dead even though alive - patients have long expressed disdain for this analytical practice, taken to the extreme here, but previously seen only when patients go for the trach) yet here even before they underwent administration of the medical intervention! The litmus cohort was thus heavily 'front loaded' due the analytical tactic. The control cohort (Noninvasive Ventilation limit) achieved an unprecedented median record high (though no one noticed) - corroborating the plausibility the unidentified internet 'randomization' technique (never previously used in Amyotrophic Lateral Sclerosis) produced biased cohorts { ¿r there e pirates afire }. I can not help but wonder if the DiPALS primary point is the wordlessly stated implication the "Open Label" tactic may be disastrous for clinical studies of Amyotrophic Lateral Sclerosis patients? The DiPALS randomized controlled study achieved 31 moon median in their litmus group but the RespiStimALS randomized controlled study achieved a 56 moon median (nearly par with the Onders's studies) in their litmus group. The "Open Label" status is one of the biggest differences in the two randomized controlled studies. Science benefits more when patients live longer because longer survival correlates with larger quantities of relevant data, the more relevant data we have the sooner we will identify the cause, the sooner we identify the cause(s) the sooner we will find the cure(s). Given the data acquired, the DiPALS really couldn't say much of anything else. --- Rob Gronkowski, Camille Kostek visit kids at Boston Children's Hospital ahead of Thanksgiving Rob Gronkowski, Camille Kostek visit kids at Boston Children's Hospital ahead of Thanksgiving Amyotrophic Lateral Sclerosis patients are kind'a in the same league as Gronk's kids . . . |
Summary of many of the pacing reports
I discovered this United Kingdom report recently; report is dated March 2017
NATIONAL INSTITUTE FOR HEALTH AND CARE EXCELLENCE https://www.nice.org.uk/guidance/ipg...nts/overview-2 ". . . It should not be regarded as a definitive assessment of the procedure . . ." Perhaps it was recently posted to the web . . . I have not completely read the report and are in the process of doing so. It address the Onders studies, the DiPALS (UK) study, the RespiStimALS (France) study and studies in Turkey, and possibly others. |
A patient crosses 7,000 days
Chart
Unofficial Pacer Study Summary Update One - Google Drive A patient with the medical intervention exceeded 7,000 days this weekend and is the first patient entering the 7000 bracket after initiating the intervention before reaching five years from symptom onset. They were one of the first patients to deploy the intervention. They are in the phenotype group 'limb onset.' In the sample the chart is based on, there are forty more patients without the intervention than with. My previous chart has about equal number of patients. There are 434 patients in this summary, 197 are known to have tried the intervention. Those who are not known to have tried the intervention have an advantage of at least forty more persons in this chart. There are several patients who are not in this chart. This would be the facebook page of the first such patient known over 7,000 days, but I do not think the link will work: *********************** |
A status report on prototype Tech solutions hinting of technology cure to Amyotrophic
Recently, Team Gleason's prime patient, a pacer user, surpassed 5,000 days with Amyotrophic Lateral Sclerosis . . .
More on Technology as Cure for Amyotrophic Lateral Sclerosis syndrome: A status report on prototype Tech solutions hinting of technology cure to Amyotrophic Lateral Sclerosis The Morning After: Boston Dynamics’ bi-ped Atlas robot is going into retirement The Morning After: Boston Dynamics’ bi-ped Atlas robot is going into retirement Boston Dynamics sends Atlas to the robot retirement home Boston Dynamics sends Atlas to the robot retirement home |
Born to Live . . .
Special facility in Mass. giving ALS patients their independence back
Special facility in Mass. giving ALS patients their independence back - YouTube At the moment 3:15 seconds in is an image of one of the pacer users and is currenly one of the top twenty longest survivors of pacer interested patients. The video aired via WCVB Channel 5 Boston on 20 February 2024. |
Initial SCALED unofficial report regarding online pacer study: count of the patients
Initial SCALED unofficial report regarding online pacer study: count of the patients
There are 246 cases where whether the patient deployed the pacer is unreported, 185 cases where the pacer was reported deployed. Since the number of patients who deployed the pacer is substantially less than the number of patients who did not, a scaled column is added, increasing the difference found by 133% (thereby making the cohorts comparable: 185 * 133% ~ 246). The current status shows pacer users leading the others at the median, three, five and eight years . . . at the ten year threshold they are about the same. At the Texas (eleven and one half years) threshold nonusers appear to have a slight lead and at twenty years a strong lead, however, most pacer users have not had enough time to reach twenty years, further, at least four patients of these long term survivors would not have been eligible for the pacer because they have long been long term survivors rather than fresh cases. Hence, the pacer is currently emerging as leader in all temporal categories (subtract four patients from each scaled difference). Unofficial Pacer Study Summary: Scaled - Google Drive Unofficial Pacer Study Summary: Scaled - Google Drive :D |
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