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


advertisement
Reply
 
Thread Tools Display Modes
Old 08-07-2023, 03:06 PM #1
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Question 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.
MuonOne is offline   Reply With QuoteReply With Quote

advertisement
Old 08-08-2023, 10:11 AM #2
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Question

Quote:
Originally Posted by MuonOne View Post
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.
Is stim harmful afterall? - Google Drive

(I do not know why the link didn't show correctly?) . . . try again.
MuonOne is offline   Reply With QuoteReply With Quote
Old 08-08-2023, 11:41 AM #3
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Exclamation Web page showing Hospice means no clinical trials

Web page showing Hospice means no clinical trials:
Advantages and Disadvantages of Hospice Care

(disadvantages section)
MuonOne is offline   Reply With QuoteReply With Quote
Old 08-09-2023, 12:37 PM #4
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Exclamation

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."



MuonOne is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
wgate (08-10-2023)
Old 08-12-2023, 09:14 AM #5
wgate wgate is offline
New Member
 
Join Date: Aug 2023
Posts: 5
1 yr Member
wgate wgate is offline
New Member
 
Join Date: Aug 2023
Posts: 5
1 yr Member
Default

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
wgate is offline   Reply With QuoteReply With Quote
Old 08-14-2023, 11:40 AM #6
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Exclamation

The table's link is in the 10:11am post, rather than the article. It seems to be operational.
MuonOne is offline   Reply With QuoteReply With Quote
Old 08-14-2023, 01:19 PM #7
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Arrow 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
MuonOne is offline   Reply With QuoteReply With Quote
Old 08-15-2023, 08:16 AM #8
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Exclamation 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...
MuonOne is offline   Reply With QuoteReply With Quote
Old 08-16-2023, 08:38 AM #9
wgate wgate is offline
New Member
 
Join Date: Aug 2023
Posts: 5
1 yr Member
wgate wgate is offline
New Member
 
Join Date: Aug 2023
Posts: 5
1 yr Member
Default

okay. so both of those studies you linked to suggest diaphragm pacing is NOT BENEFICIAL. Did you find these results surprising?
wgate is offline   Reply With QuoteReply With Quote
Old 08-18-2023, 11:25 AM #10
MuonOne's Avatar
MuonOne MuonOne is offline
Grand Magnate
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
MuonOne MuonOne is offline
Grand Magnate
MuonOne's Avatar
 
Join Date: Feb 2007
Posts: 3,341
15 yr Member
Default 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.
MuonOne is offline   Reply With QuoteReply With Quote
Reply

Tags
doctor, hospice, patients, studies, terminal


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 08:04 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.