Talk:Fatal insomnia

message: Sorry if this sounds stupid, but couldn’t a person help to cure fatal familial insomnia by getting nightly injections of a sedative?- EKN
:I understand that these drugs have no effect as the mechanism in the brain that they act on is what is malfunctioning. I'll see if I can find some more and add it to the article... Dan100 (Talk) 20:43, 16 March 2006 (UTC)
replies: text: I couldn't, but I gave the article a tidy up anyway. Dan100 (Talk) 07:31, 17 March 2006 (UTC)

text: As far as I've been able to tell, inducing a coma wouldn't have any effect at all on the health of the patient, because the disease would continue to advance regardless of their state of consciousness. Sedatives wouldn't work, either, because the patient is not in a state of full consciousness once the disease sets in, anyway, and the action of the prions on the brain matter produces much, much more action on the vital parts of the brain than any sedative could hope to do by shifting dopamine or serotonin or melatonin around. The thing is, the sufferers of this disease aren't simply casual insomniacs; they can't sleep at all, so they slowly degenerate into a semi-conscious, disabled stupor, until they die after the prions destroy enough of their brains. The MSNBC piece on this really explains it well. The link is in the article. Avalyn 08:43, 26 April 2006 (UTC)
replies: text: The way I read it, the protein anomaly is what causes the health deterioration and eventual death. You could probably put them in a coma with barbs or something, and that might improve quality of life until the plaque buildup starts to cause noticeable health deterioration, but it wouldn't affect the progression. Successful treatment would require gene therapy, a way to remove the plaques or a way to replace the anomalous protein with functional protein. Zuiram 18:44, 23 April 2007 (UTC)

text: Would "the disease invariably leads to death within 7-36 months" be better? Zuiram 18:44, 23 April 2007 (UTC)

text: You are confusing sleep with coma/unconsiousness. Sleep is a biologically planned event, in which the brain and body carry out certain functions. Neither coma nor unonsiousness are equvivalent. 129.118.38.198 (talk) 20:18, 26 March 2009 (UTC)
thread_title:  Drug therapy 

message: The main article said "The gene responsible is carried in just 28 families worldwide". I moved this statement here so we could talk about it. At first glance, it sounds like an impossible claim to support, as no one has analyzed the genes for all families worldwide, nor is there any statement about how the families are counted. I suspect the statement is a misinterpretation of something much more nuanced from the medical literature, but I was unable to find the original. I would like to hear what other peopel think. --Zippy 05:58, 5 June 2006 (UTC)
replies: text: The lack of sleep is not what causes death. Zuiram 18:45, 23 April 2007 (UTC)
thread_title: just 28 families

message: The msnbc report (http://www.msnbc.msn.com/id/6822468/) says that-"The Roiters’ extended family has formed an association to help find a cure, and raise the money for research."-is there any other information about this association as i can't find anything, anywhere.
--Frills 04:51, 15 August 2006 (UTC)
thread_title:  FFI association 

message: "There are other diseases hello involving the mammalian prion."
- This sentence is nonsensical -- there is no such thing as "the mammalian prion." -- 201.51.236.252 11:59, 7 November 2006 (UTC)
replies: text: It would seem to be the group of proteins synthesized to eventually become Silver-staining amyloid plaques, whatever the cause. This protein is probably different in different mammals and organs, and it often localizes copper. Perhaps that shouldn't be a wonder, because Copper and Silver are in the same group. Brewhaha@edmc.net 08:41, 8 May 2007 (UTC)

text: If amyloidosis is a symptom common to several diseases, one of them jenetic, and we can prevent the symptom, then maybe that will lead to finding and preventing the cause. That should lead to sleep. Hmmm. I want to hear "Flypaper" by Kaos, again. I think I might've conversed with Kaos. Brewhaha@edmc.net 08:41, 8 May 2007 (UTC)
thread_title:  Prion section should be deleted or revised 

message: If this is a dominent trait couldn't the possibility be there for 100% inheritance.  Look at this.  Say someone had parents each with one of the dominant genes (Pp and Pp) and their child had two of the genes (PP).  All of their gammetes would contain the dominant gene thus making it impossible for the offspring not to inherit the gene.
The chances of both parents having the defective alleles are astronomical and even then there would only be a 25% chance of having offspring with a PP genotype. If this person went on to breed then yes there would be 100% inheritance but I presume that the onset would be far earlier and more rapid than in the heterozygous individual reducing their chances of having children. Those are my thoughts anyway. --Meridius 23:25, 5 February 2007 (UTC)
replies: text: That makes sense to me, but I didn't formally take Jenetiks. Brewhaha@edmc.net 08:48, 8 May 2007 (UTC)
thread_title:  50% probability 

message: This one - http://www.afiff.net
I went there just now, and it has a "Hacked by / y@kışıkLı® / CAPRAZ ATES TEAM" message. If this is not reversed, then the external link to it will be useless, and should be removed. 81.153.110.46 (talk) 16:02, 20 January 2008 (UTC)
replies: text: Well, it still appears to be, so I deleted the link. dcd139 (talk) 01:47, 29 January 2008 (UTC)

text: Better news now: the site has recovered and seems to be operating normally again, so I've re-added it to the external links. Loganberry (Talk) 04:36, 6 March 2008 (UTC)
thread_title:  AFIFF website hacked 

message: CJD is a TCE, so this should be edited to reflect that.
Snellios (talk) 19:23, 13 April 2008 (UTC)
replies: text: I put 'prion' with an internal link in the beginning Snellios (talk) 18:29, 4 May 2008 (UTC)
thread_title:  CJD is a TCE 

message: "Some forms of congestive heart failure are also believed to be caused by variant prion" - really? I don't think I've ever come across this in any of the literature. If it doesn't get a citation I'm going to remove it. Snellios (talk) 18:28, 4 May 2008 (UTC)
thread_title:  CHD 

message: "These are generally not considered to be transmissible, except by direct contact with infected tissue, such as from eating infected tissue, transfusion or transplantation."
::All prion diseases are experimentally transmissable, what this sentence should say is that they are not considered an infectious  biological agent. Snellios (talk) 16:56, 9 May 2008 (UTC)
thread_title:  Transmissability 

message: By the same "Turkish hackers" at  yakisikli@caprazAtes.org
Take off the link and it won't be targeted.
Lunakeet 14:32, 19 May 2008 (UTC)
thread_title:  Site hacked-again. 

message: in the presentation section the following appear,separated by 2 sentences: 'death usually occurs between 7 and 36 months of onset.' and 'the disease has 4 stages, taking from 7 to 18 months to run its course.'seems to me it's gotta be one or the other or something else, but not both.Toyokuni3 (talk) 02:48, 4 June 2008 (UTC)
thread_title: Inconsistency under 'Presentation

message: Complete inability to sleep is followed by rapid loss of weight. This lasts for about three months.
I am not familiar with this condition, and I suppose the number of people who truly are could be counted on three hands. I am, however, familiar with how much sleep deprivation a person can undergo before they die, and it's far less than three months. So I'm guessing that when this says "complete inability to sleep" it means complete inability to fall asleep normally, but with periods of passing out for short time intervals all throughout the day. The current world record for sleep deprivation is on the order of 280 hours, and much more than that is potentially fatal. --68.252.213.218 (talk) 05:50, 24 July 2008 (UTC)
replies: text: Can you cite evidence that anyone who did not suffer from FFI has ever died from sleep deprivation? bbi5291 (talk) 00:51, 25 July 2012 (UTC)
thread_title:  Possible clarification needed. 

message: Under the symptoms it said people with this syndrome crave Taco Bell.  This is obviously a joke, so I removed it.  
--68.44.13.238 (talk) 12:05, 4 February 2010 (UTC)
thread_title:  Craving Taco Bell? 

message: How rare is this disease? Because I am scared of it.  —Preceding unsigned comment added by 203.96.2.2 (talk) 12:06, 21 December 2010 (UTC)
replies: text: It is very rare. There is a gene-test to find out if someone is a carrier. But even if someone has the mutation, it does not mean person will get it 100% sure. Count yourself: 100 persons might have it of all the people of the world. It is more probable someone kills you with a car than you getting FFI. Sleep well.--RicHard-59 (talk) 04:40, 28 December 2010 (UTC)
thread_title:  Rarity? 

message: I was trying to find something about FFI & sleeping pills or sedatives but no luck.--RicHard-59 (talk) 04:44, 28 December 2010 (UTC)
replies: text: Seems that they can work to get sleep, more or less. You might take a look here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1781306/#__sec16title --#Reaper (talk) 01:19, 2 December 2016 (UTC)
thread_title:  Sleeping pills & sedatives 

message: The existence of this disease must have been disporven because the doctor in Fight Club said you couldnt die from insomnia.  — Preceding unsigned comment added by 86.148.50.141 (talk) 01:44, 21 September 2011 (UTC)
replies: text: Heh. Looie496 (talk) 03:12, 21 September 2011 (UTC)
thread_title:  Disproven 

message: This is not true at all. NREM is the most important for health, and avoiding REM sleep has been linked to improvement of health.
You treat depression by avoiding REM sleep. Polyphasic sleep is based on avoiding REM sleep. Melatonin supplementation promotes NREM sleep
and reduces REM sleep. During REM phase, stress hormones are released, they are more of a shock for the body. That's why
by practicing polyphasic sleep, people can avoid REM phase, nightmares (vivid dreams) and stay healthier.
Grammar And Sentence Structure
Some of the sentences in this article are slightly lengthy, and could be broken down making the article easier to understand for the reader. Specifically the opening statement. 
Wilson0624 (talk) 18:48, 4 March 2014 (UTC)
thread_title:  REM is most important for health? 

message: As someone reading this article without special knowledge of biological functions, I found it quite difficult to follow along with some of the terminology. After reading the page I understand that simplifying information about prions and chromosomes and their role in FFI is not easy, but it would make the page much more interesting and beneficial to an average reader!
Csmith2017 (talk) 07:56, 2 May 2014 (UTC)
thread_title:  General review of article 

message: I want to applaud the edits that have been made to this article since I read it last. As a student studying sleeping and dreaming, I understand a lot of these terms, but somebody who may not know the terms could become confused, especially by the scientific sections such as the prion and the sleep stage sections. I am not by any means saying that it needs to be dumbed down, but maybe we could go back through and explain some of that in a more simplistic way, that could really make this article more accessible and understandable to the public. 
Also, I think it would be helpful for more to be added into the Epidemiology section. The sentence structures look fantastic, but as mentioned before, more simplified detail could be helpful. 
Sam.kazda04 (talk) 16:37, 9 May 2014 (UTC)
thread_title: Terminology for the layperson

message: The initial summary of the article dated the first documented case in 1765, found in an Italian man.  The source seems iffy.
Later, under the Onset section, there's this line:
>The first case was reported in the Netherlands of a 57 year old man of Egyptian descent.
The source for that only says "scientific correspondence".
It may well be that the first definite case was the case in the Netherlands and the former is simply a suspicion, but either way, clarification needed!
:I came to post the same question.  The citation for the Netherlands case is simply given as 'scientific correspondence'.  I would suggest that these correspondences be presented or the attribution of this as the 'first case' be removed.  The Italian case also rests on shaky grounds: the citation links to a website that contains an excerpt from the book labeled in the citation discussing the 1765 case without mention of its primacy, and a YouTube video describing the Italian case as 'patient zero'.  
:I think better sources and citations would be helpful for both of these claims; if they cannot be provided a rewording might be in order. Bearnfæder (talk) 15:26, 12 October 2014 (UTC)
thread_title:  Clarification needed - First Case 

message: Can someone expand/explain what source 5 is? Using page version . Thanks, 15zulu (talk) 00:54, 8 October 2015 (UTC)
replies: text: Good question. It was added by  in April 2014. That editor hasn't made any edits since then, so it's unlikely they will be back to explain. Since this fails Wikipedia's requirement for verifiability, and medical sources, the reference and any contentious content only supported by it should be removed. Grayfell (talk) 01:54, 8 October 2015 (UTC)
replies: text:  actually the diff you found is the answer. Apparently Wilson0624 was incorrectly using WP:CITESHORT. In short,  refers to . Doing a google search, got me the article, which happens to be in a section titled "Scientific Correspondence". Wilson0624 does two more unique short cites:  and . I assume the "Journal of Sleep Research" refers to  but that doesn't make sense for "Gambetti and Lugaresi 1998" since that's only the second & fourth author and a different year. Joyful mess. Cheers, 15zulu (talk) 08:59, 10 October 2015 (UTC)
replies: text: Oh! I see. Good catch. I guess that explains why "Scientific Correspondence" is capitalized. I've removed the refs and replaced them with "Jansen et al." as that appears to have been the intention. Right? Grayfell (talk) 09:23, 10 October 2015 (UTC)
replies: text: Yeah, that's what I think s/he wanted. I've expanded & wikified the ref. Thanks for the help. 15zulu (talk) 05:45, 18 October 2015 (UTC)
thread_title:  Source 5 

message: The 'cause' section only says that the disease is caused by a certain mutation. It doesn't say how that mutation causes the symptoms. I think that information should be added.  — Preceding unsigned comment added by ChengduTeacher (talk • contribs) 11:43, 23 September 2018 (UTC)
replies: text: I added the explanation that seems to be the most cited, but there might be more to the disease. No study seems to mention an exact neurological explanation.
--James Az. H (talk) 00:21, 2 November 2019 (UTC)
thread_title:  'Cause' section not clear 

message: “Fatal familial insomnia (FFI) is a prion disease of the brain.[1] It is usually caused by a mutation to the gene encoding protein PrPC.[2] It has two forms: fatal familial insomnia (FFI), which is autosomal dominant and sporadic fatal insomnia (sFI) which is due to a noninherited mutation.”
These sentences are confused. Per the Merck citation in [2], FFI is genetic, whereas sFI is a non-genetic prion disease. But these sentences seem to be saying that FFI and sFI are two forms of…FFI? And that FFI is always a prion disease, whereas sFI is apparently the prion-caused syndrome and FFI is genetic but not prion. Foijsdf (talk) 13:15, 8 March 2022 (UTC)
thread_title:  Second paragraph confuses sFI and FFI 

message: — Assignment last updated by MeadorBriannaM (talk) 18:52, 6 October 2022 (UTC)
thread_title: Wiki Education assignment: Neuroscience