ALS News & Research For postings of news or research links and articles related to ALS


advertisement
Reply
 
Thread Tools Display Modes
Old 11-17-2023, 01:50 PM #21
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Exclamation

Quote:
Originally Posted by MuonOne View Post
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.
The above post included a typographical error . . . the post ought to have read:


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.
MuonOne is offline   Reply With QuoteReply With Quote

advertisement
Old 11-21-2023, 01:22 PM #22
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Default

Taking a break for Happy Turkey Day
MuonOne is offline   Reply With QuoteReply With Quote
Old 11-22-2023, 01:15 PM #23
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Help 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 . . .
MuonOne is offline   Reply With QuoteReply With Quote
Old 12-28-2023, 02:18 PM #24
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Exclamation 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.
MuonOne is offline   Reply With QuoteReply With Quote
Old 03-05-2024, 03:34 PM #25
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Arrow 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:

***********************
MuonOne is offline   Reply With QuoteReply With Quote
Old 04-18-2024, 02:35 PM #26
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Lightbulb 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
MuonOne is offline   Reply With QuoteReply With Quote
Old 04-24-2024, 02:05 PM #27
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Heart 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.
MuonOne is offline   Reply With QuoteReply With Quote
Old 05-01-2024, 03:43 PM #28
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Lightbulb 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

MuonOne is offline   Reply With QuoteReply With Quote
Old 06-06-2024, 10:17 AM #29
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Exclamation Affirmed typographical error . . .

"Not Reached (>33)" and "Not Reached (>133)" months ought to read "Not Reached (>33)" and "Not Reached (>33)" months in Table 2 for the Sham cohort of the RespiStimALS paper:

Early diaphragm pacing in patients with amyotrophic lateral sclerosis (RespiStimALS): a randomised controlled triple-blind trial
Early diaphragm pacing in patients with amyotrophic lateral sclerosis (RespiStimALS): a randomised controlled triple-blind trial - PubMed

in e-mail apparently from RespiStimALS's lead laparoscopic neurosurgeon.
MuonOne is offline   Reply With QuoteReply With Quote
Old 06-07-2024, 10:36 AM #30
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,295
15 yr Member
Help Updated pacer summary sheets, with three perspectives

These summary sheets are from my web observations of pulmonary pacing interested patients over the last about twenty-five years.

This brief summary was 'completed' when the number of pacing patients nearly equaled the number of patients undisclosed (and probably not pacing):
Unofficial Pacer Summary: LTSumAlpha - Google Drive

These summaries are nearly complete for patients involved at the time DiPALS and RespiStimALS published pacing reports:

One of these sets of 'summaries' shows four fewer patients because they likely were ineligible because they passed their opportunity window before the pacer intervention was developed:

All inclusive:
Unofficial Pacer Study Summary: SCALED Pro+ - Google Drive

Four omitted:
Unofficial Pacer Study Summary: SCALED Pro- - Google Drive

MuonOne is offline   Reply With QuoteReply With Quote
Reply

Tags
doctor, hospice, patients, studies, terminal

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Diaphragm Pacing for ALS at a Crossroads Following Conflicting Trial Results MuonOne ALS News & Research 0 06-25-2018 04:08 PM
Diaphragm pacing system implanted in a patient with ALS MuonOne ALS News & Research 0 06-07-2018 09:48 AM
Diaphragmatic pacing in amyotrophic lateral sclerosis MuonOne ALS News & Research 0 10-27-2016 09:29 AM
Diaphragm pacing in patients with amyotrophic lateral sclerosis MuonOne ALS News & Research 0 10-27-2016 09:28 AM
Pacing (long post, sorry) Always_Believe Reflex Sympathetic Dystrophy (RSD and CRPS) 24 03-17-2016 11:59 AM


All times are GMT -5. The time now is 01:44 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.