Healing ALS website

Tim Smith

Member
Joined
Sep 13, 2019
Messages
12
Reason
PALS
Diagnosis
03/2019
Country
US
State
IN
Reading up on some of the people who claim they have beat this disease by diet and supplements. Whats the real story behind these people? Was their diagnosis inaccurate? I’m sure everyone here has tried following their eating and supplement plan?
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,423
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
Dr. Bedlack (Duke University) investigates claims of healing. Go to ALS Untangled if you want to see some of his investigations on individual treatments and protocols. He also just gave a NEALS talk that included documented reversals.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
109
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
At this point, I think everyone’s progression is different. I did a lot of research and my pals took a lot of supplements and we tried to monitor his diet appropriately as well for several years until he said ‘enough’. We stopped the supplements over a year ago and he eats a healthy diet. Has his progression sped up? No. Does that mean the supplements didn’t help? I don’t know as don’t think progression is necessarily linear.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,664
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
It is often possible to distinguish wheat from chaff claims in the chronic disease world with one simple question: is the Web site selling a product to treat disease (legal disclaimers aside)? In the case of the site you mention, the answer is yes.
 

ARCG

Distinguished member
Joined
Oct 12, 2016
Messages
109
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
Laurie is right,

In addition, one of the things that makes a treatment for ALS so elusive is the difference in progression between pals. Usually in the scientific method of conducting experiments, researchers try to test like subjects. With ALS the trial results may be skewed by a set with a majority of fast progressors or, conversely, a set with a majority of slow progressors. Usually only pals who were recently diagnosed are included in the trials so the researchers don’t know definitively the participants rate of progression. A better model may be to have participants who are at least a year plus since diagnosis, so some determination of progression can be made and outcomes can more accurately be predicted.
 
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