Talk:ALS/Archive 3

Archive 1

Archive 2

Archive 3

ice bucket challenge

Ice bucket challenge is fine in the history (or even better, society and culture) section, but as it presently exists and gets persistently reverted, it does NOT belong in the top line section. Presently it reads "It became well known in the United States when it affected the famous baseball player Lou Gehrig,[1][11] and later when the ice bucket challenge became popular in 2014.[12]" This is an absolutely idiotic claim that does not belong. It did in fact become known in the United States when it affected Lou Gehrig, hence why its referred to as "Lou Gehrig's Disease." It also received a lot of attention because of Steven Hawking, who is conspicuously absent here. There is no empirical evidence that actual awareness that this is a motor-neuron disease that affects some people increased because of the ice bucket challenge. Money for research certainly increased, and stupid videos of people dropping buckets of ice on their heads increased, but you show me ONE piece of data that shows that more people knew that ALS existed because of the ice bucket challenge. Footnote 12 (which by the way is a broken link), certainly doesn't appear to support this, I googled it and found the article, but its behind a paywall, it seems to kind of make a statement that it "increased awareness" but it doesn't appear to even be an article that addressed this question. As this reads in its present form, it sounds as though nobody except a few experts knew what ALS was, then the ice bucket challenge came along. This is a completely idiotic claim and I will continue to delete that sentence until it stays out of that part of the article. You've got two damn extended pieces on the ice bucket challenge in both "history" and "society and culture." It does not need to be at the end of the intro, particularly in a way that lacks empirical support.— Preceding unsigned comment added by 64.126.175.137 (talk • contribs) 27 January 201 (UTC)

please, take a breath. I am sorry you cannot access the article citing greater awareness. I can email it to you, if you like. I've added content about Hawking to the lead - I think that is a good point that he should be included there. The content about ice bucket challenge is well sourced, and whatever you think of the idiocy of the crowd, it had a big impact on public awareness. Jytdog (talk) 01:53, 27 January 2015 (UTC)

The ice bucket challenge has generated reliable sources and thus we include it. The lead summarizes the article and thus deals with social cultural and historical aspects of disease. Doc James (talk · contribs · email) 02:20, 27 January 2015 (UTC)

There was a brief mention of The Ice Bucket Challenge in the History section - I don't think it is fair to call the brie mention in the History section an "extended piece" by any reasonable use of that term. but i do think the occurrence was redundant, so I moved that sentence into the Society and Culture section. I'd like to re-settle the article. Jytdog (talk) 03:08, 27 January 2015 (UTC)

Here in the UK I've just seen the TV broadcast by Larry Stogner, news anchor for ABC affiliate WTVD in North Carolina for 40 years, and participant in the 2014 Ice Bucket Challenge, announcing his imminent retirement owing to his being diagnosed with ALS - very moving to watch. Should he get a mention in the main Wikipedia article? ShropshirePilgrim (talk) 11:13, 28 January 2015 (UTC)

I'm afraid probably not - though if he has a Wikipedia page already he could be added to this: https://en.wikipedia.org/wiki/List_of_people_with_ALS --PaulWicks (talk) 16:11, 28 January 2015 (UTC)

cyanobacteria

About this dif by Complexitydaemon, with an edit note about replacing the citation needed tag with "Dunlop et al. as PLoS ONE is a reputable peer reviewed electronic journal." and this dif by Guy...

per MEDRS, the fact that a source is "reputable peer reviewed" is not relevant -- MEDRS really emphasizes that we use secondary sources for health related content (per policies WP:NPOV, WP:OR, and the general WP:RS guideline, all content should always be based on secondary sources -- MEDRS is just more anal about it). Please especially read Wikipedia:Identifying_reliable_sources_(medicine)#Respect_secondary_sources which specifically talks about avoiding primary sources hyped by the media; the additional sources that Guy added are just media hype. We aim for MEDRS-compliant secondary sources -- review articles published in the biomedical literature or statements by major medical & scientific bodies... If yuo are puzzled by the anality (?) of MEDRS, please see the lead of my draft essay, Why MEDRS?, which attempts to explain it. Thanks! Jytdog (talk) 23:17, 16 February 2015 (UTC)

There are lots of good secondary sources for this condition. We should use them instead. Doc James (talk · contribs · email) 23:46, 16 February 2015 (UTC)

Actually my view is we should use them *as well*. The Dunlop paper was widely reported, and is plainly reliable, relevant and important. Guy (Help!) 08:49, 17 February 2015 (UTC)

Jytdog I have found a review paper that covers BMAA misincorporation and added it in with revision [1]. Complexitydaemon (talk) 02:47, 17 February 2015 (UTC)

nice find!!! i was just reading it, with great interest. thanks. Jytdog (talk) 02:58, 17 February 2015 (UTC)

This actually bears somewhat on a recent discussion at WT:MED#Primary studies, about the nuances of when, how, and if we should cite primary publications—in particular, how we should cite primary sources alongside secondary sources. In that discussion, my opinion was that it was sometimes going to be useful to our readers (and beneficial for our articles) to cite important, high-quality primary studies on which our high-quality secondary sources relied.

I (and that discussion) didn't really contemplate the precise circumstance here, where the high-quality secondary source promulgates a hypothesis regarding disease etiology and a subsequent primary publication presents new data to support that hypothesis. (The third citation, a mention on a 'regular' news website, doesn't really matter either way. It just means that someone's university is good at writing a press release, not that the research is particularly noteworthy.)

I also don't know what the best practice is to deal with an issue like this, where we have a primary study carried out in cell culture that attempts to address a question of biological mechanism. On the one hand, it's not directly offering clinical advice or clear medical conclusions. On the other hand – leaving aside entirely WP:MEDRS – absent specific secondary peer-reviewed journal articles which address this specific study, it's difficult to assign an appropriate WP:WEIGHT to its findings. And if we give a particular spotlight to a particular potential etiology, then it's only a matter of time before we see ads for the $10,000 "De-BMAA herbal cleanse! Remove the secret toxin Big Pharma doesn't want you to know about!" It's a sticky question, and I'm concerned about what happens if we let the primary literature (even the in vitro literature) get too far ahead of the secondary literature. TenOfAllTrades(talk) 18:01, 17 February 2015 (UTC)

some good sources

here: http://alsuntangled.com/completed.html Jytdog (talk) 01:08, 19 March 2015 (UTC)

PMAA and ALS pathophysiology

For considerations by the writers of this page:

ALS PBAA and Fish consumption:

http://nutritionfacts.org/video/als-lou-gehrigs-disease-fishing-for-answers/

L E Brand, J Pablo, A Compton, N Hammerschlag, D C Mash. Cyanobacterial Blooms and the Occurrence of the neurotoxin beta-N-methylamino-L-alanine (BMAA) in South Florida Aquatic Food Webs. Harmful Algae. 2010 Sep 1;9(6):620-635.

W G Bradley, D C Mash. Beyond Guam: The cyanobacteria/BMAA hypothesis of the cause of ALS and other neurodegenerative diseases. Amyotroph Lateral Scler. 2009;10 Suppl 2:7-20.

W G Bradley. Possible therapy for ALS based on the cyanobacteria/BMAA hypothesis. Amyotroph Lateral Scler. 2009;10 Suppl 2:118-23.

T A Caller, N C Field, J W Chipman, X Shi, B T Harris, E W Stommel. Spatial clustering of amyotrophic lateral sclerosis and the potential role of BMAA. Amyotroph Lateral Scler. 2012 Jan;13(1):25-32.

P Factor-Litvak, A Al-Chalabi, A Ascherio, W Bradley, A Chío, R Garruto, O Hardiman, F Kamel, E Kasarskis, A McKee, I Nakano, L M Nelson, A Eisen. Current pathways for epidemiological research in amyotrophic lateral sclerosis. Amyotroph Lateral Scler Frontotemporal Degener. 2013 May;14 Suppl 1:33-43.

W Holtcamp. The Emerging Science of BMAA: Do Cyanobacteria Contribute to Neurodegenerative Disease? Environ Health Perspect. 2012 Mar; 120(3): a110–a116.

A S Chiu, M M Gehringer, J H Welch, B A Neilan. Does α-amino-β-methylaminopropionic acid (BMAA) play a role in neurodegeneration? Int J Environ Res Public Health. 2011 Sep;8(9):3728-46.

W G Bradley, A R Borenstein, L M Nelson, G A Codd, B H Rosen, E W Stommel, P A Cox. Is exposure to cyanobacteria an environmental risk factor for amyotrophic lateral sclerosis and other neurodegenerative diseases? Amyotroph Lateral Scler Frontotemporal Degener. 2013 Sep;14(5-6):325-33.

A Vega, E A Bell. α-Amino-β-methylaminopropionic acid, a new amino acid from seeds of Cycas circinalis. Phytochemistry. 1967;6(5):759-62.

P A Cox, O W Sacks. Cycad neurotoxins, consumption of flying foxes, and ALS-PDC disease in Guam. Neurology. 2002 Mar 26;58(6):956-9.

S A Banack, P A Cox. Biomagnification of cycad neurotoxins in flying foxes: implications for ALS-PDC in Guam. Neurology. 2003 Aug 12;61(3):387-9.

S J Murch, P A Cox, S A Banack. A mechanism for slow release of biomagnified cyanobacterial neurotoxins and neurodegenerative disease in Guam. Proc Natl Acad Sci U S A. 2004 Aug 17;101(33):12228-31.

X Shen, C A Valencia, J W Szostak, B Dong, R Liu. Scanning the human proteome for calmodulin-binding proteins. Proc Natl Acad Sci U S A. 2005 Apr 26;102(17):5969-74. Erratum in: Proc Natl Acad Sci U S A. 2005 Jul 5;102(27):9734.

J Pablo, S A Banack, P A Cox, T E Johnson, S Papapetropoulos, W G Bradley, A Buck, D C Mash. Cyanobacterial neurotoxin BMAA in ALS and Alzheimer's disease. Acta Neurol Scand. 2009 Oct;120(4):216-25.

M W Duncan, J C Steele, I J Kopin, S P Markey. 2-Amino-3-(methylamino)-propanoic acid (BMAA) in cycad flour: an unlikely cause of amyotrophic lateral sclerosis and parkinsonism-dementia of Guam. Neurology. 1990 May;40(5):767-72.

P A Cox, S A Banack, S J Murch, U Rasmussen, G Tien, R R Bidigare, J S Metcalf, L F Morrison, G A Codd, B Bergman. Diverse taxa of cyanobacteria produce beta-N-methylamino-L-alanine, a neurotoxic amino acid. Proc Natl Acad Sci U S A. 2005 Apr 5;102(14):5074-8. Epub 2005 Apr 4. Erratum in: Proc Natl Acad Sci U S A. 2005 Jul 5;102(27):9734. — Preceding unsigned comment added by 99.227.210.91 (talk) 06:05, 6 April 2015 (UTC)

fungal

following content was added by good faith IP edito, 62.43.134.145 first here then here. <blockquote?Some observations provide compelling evidence of fungal infection in ALS patients analyzed, suggesting that this infection may play a part in the etiology of the disease or may constitute a risk factor for these patients.

References

Source fails MEDRS - we should wait til there is a review discussing this, I think. happy to discuss. Jytdog (talk) 12:29, 1 May 2015 (UTC)

Agree need better source Doc James (talk · contribs · email) 14:08, 1 May 2015 (UTC)

ALS in males and females

There's nothing in the article about males and females - who is more likely to develop ALS, whether the symptoms differ etc. [2] says "ALS is 20% more common in men than in women." so if a better source can be found by those who know where to look, this type of thing could be very interesting to include in the article. — This, that and the other (talk) 06:47, 8 June 2015 (UTC)

Registry

A registry in one country does not deserve its own main section in the article. I belongs under research. Thus moved it back their. We do not have such a heading in our WP:MEDMOS and I think it fits fine under research. Other thoughts? Doc James (talk · contribs · email) 01:39, 2 September 2015 (UTC)

The US registry is relevant for research, but it is also an important source of information. If we become aware of registries in other countries we should mention them and change the title to "Registries". — Preceding unsigned comment added by Jsreznick (talk • contribs) 12:11, 2 September 2015 (UTC)

In general, I agree with Doc James' take on this. Wikipedia is foremost an encyclopedia; it is not intended to be a directory of every resource or website related to a given topic. A mention in the 'Research' section seems more than sufficient, and places the registry in an appropriate context.

Incidentally, it would be helpful to see some independent sources which talk about what this particular registry does and what its impact has actually been. Why is it worthwhile for Wikipedia to call attention to this particular project? CDC affiliation is generally a promising sign, but not necessarily sufficient by itself. I've taken a quick glance through the "Registry Resources" pages on the website linked by Jsreznick, and it's mildly concerning that I can't readily locate basic information like when the Registry was founded or how many patients are enrolled, or links to peer-reviewed publications based on registry information. While we want to avoid taking a promotional tone, and to avoid over-stuffing the description with minutiae, I am troubled that the only specific information I've seen in any draft Wikipedia text is that the Registry currently exists. TenOfAllTrades(talk) 14:01, 2 September 2015 (UTC)

There are quite a lot of registries (e.g. Italy, Ireland, etc., etc., etc.) the CDC one although it required a lot of lobbying and has federal funding has not, as of yet, done much to make it more worthy of mention that the others. --PaulWicks (talk) 13:22, 2 September 2015 (UTC)

Culture section

ALS has featured in quite a number of books, films, and TV shows - I'm not sure we need quite such detailed coverage about one plotline of the Incredible Hulk (not that I want to annoy the Hulk, I hear he's smashing) - perhaps that can all sit somewhere else apart from perhaps the most well known pieces such as Theory of Everything? --PaulWicks (talk) 13:18, 2 September 2015 (UTC)

We do not. Feel free to trim. Doc James (talk · contribs · email) 22:50, 2 September 2015 (UTC)

Deleting some excessively detailed / research-heavy subsections

Interested in the views of other editors but on reviewing the sections "Eye movement", "Skeletal muscle units" and "Lactate and cinnamate" I came across a number of issues that I think makes them good candidates for removal.

Eye Movement: There's already a good descriptive line in "late stages" characterizing what happens for most patients. The subsequent section (see below) contains some very old studies (1983) as citations and some claims that just don't bear relevance to how ALS is managed today in the clinic. For instance we don't use EOG clinically and it's not used much at all in research, so this seems excessively detailed and verging on WP:OR. The embyronic lineage of EOM's line is also not really all that relevant to a general page on ALS. To be clear, most people with ALS will never have any sort of experience with eye control, although some patients in later stages particularly if using a tracheostomy / ventilator might do but it's somewhat uncommon.

Skeletal Muscle Units: This seems more like an essay or a somewhat spotty review of the topic, doesn't seem appropriate here.

Lactate and cinnamate: As above

PaulWicks (talk) 18:59, 17 February 2016 (UTC)

Eye movement

People with ALS may have difficulty in generating voluntary fast movements of the eye. The speed of eye movement is slower in people with ALS. Problems in generating smooth pursuit and convergence movements have also been noted. Testing the vestibulo-ocular reflex should help in identifying these problems. The electrooculography (EOG) technique measures the resting potential of the retina. EOG findings in people with ALS show progressive changes that correlate with disorder progression, and provide a measurement for clinically evaluating the effects of disorder progression on oculomotor activity. Additionally, EOG may allow earlier detection of problems with the eyes.

The embryonic lineage of EOMs differs from that of somite-derived muscles. EOMs are unique because they continuously remodel through life and maintain a population of active satellite cells during aging. EOMs have significantly more myogenic precursor cells than limb skeletal muscles.

Skeletal motor units

Despite sharing fixed sequences of recruitment, extraocular muscles (EOMs) and skeletal muscles exhibit different characteristics. The following are characteristics of EOMs that differ from skeletal motor units.

• One neural fiber connects with only one or two muscle fibers
• No ocular stretch reflexes, despite being rich in muscle spindles
• No recurrent inhibition
• No special fast-twitch or slow-twitch muscles
• All eye motor neurons participate equally in all types of eye movements—not specialized for saccades or smooth pursuit

Differences are also noted between healthy and affected EOMs. EOMs from postmortem donors preserved their cytoarchitecture, as compared to limb muscles. Healthy EOMs consist of a central global layer (GL) facing the globe and a thin orbital layer (OL) facing the walls of the orbit. EOMs affected by ALS preserve the GL and OL organization. EOMs possess the neurotrophic factors brain-derived neurotrophic factor (BDNF) and glial cell line-derived neurotrophic factor (GDNF), and these neuroprotective factors are also preserved in EOMs affected by ALS. Laminin is a structural protein typically found in the neuromuscular junction (NMJ). Lnα4 is a laminin isoform that is a hallmark of skeletal muscle NMJs. People with ALS showed preserved Lnα4 expression in EOM NMJs, but this expression was non-existent in limb muscle NMJs from the same people. Preservation of laminin expression may play a role in preserving EOM integrity in people with ALS. People with sporadic ALS (sALS) have increased levels of intracelluar calcium, causing increased neurotransmitter release. Passive transfer of sera from people with sALS increases spontaneous transmitter release in spinal, but not EOM terminals; therefore, EOMs are assumed to be resistant to changes in physiologic conditions typically found in ALS.

However, some effects of the disorder were noted. EOMs affected by ALS had a larger variation in fiber size compared to those in age-matched healthy controls. EOMs exhibited both clustered and scattered atrophic and hypertrophic fibers that are characteristic of disorder, but these muscles showed significantly less damage compared to limb muscles from the same donors. These EOMs also showed an increase in connective tissue and areas of fatty replacement in compensation of fiber loss and atrophy. Ophthalmoplegia, a loss of neurons in and around the ocular motor nuclei, has been noted in ALS patients. Additionally, myosin heavy chain content of the EOM fibers was altered, with a loss of normal expression of MyHCslow tonic in the GL and the OL did not contain MyHCemb, which is normally expressed in this layer. This change may represent a change in innervation pattern that may include reinnervation by a different type of motor neuron or loss of multiple innervations. Changes in MyHCslow and MyHCemb are the only fiber changes seen in EOMs, leaving the EOM fiber composition relatively normal. Because EOMs are normally highly innervated, any denervation is compensated for by neighbouring axons which preserve function.

Lactate and cinnamate

Lactic acid is an end product of fermentation and is known to cause muscle fatigue. Lactate dehydrogenase (LDH) enzyme exerts its effects bidirectionally and is able to oxidize lactate into pyruvate so it can be used in the Krebs cycle. In EOM, lactate sustains muscle contraction during increased activity levels. EOMs that have high LDH activity are thought to be resistant to ALS.

Cinnamate is a blocker of lactate transport and exogenous lactate on fatigue resistance. Cinnamate is able to cause fatigue in EOM, while decreasing EOM endurance and residual force; however, cinnamate has no effect on the extensor digitorum longus muscle in the leg. In contrast, replacing glucose with exogenous lactate increases fatiguability of EDL muscles but not EOMs. Fatiguability in EOMs was only found when a combination of exogenous lactacte plus cinnamate replaced glucose.

NFL

There has been some news surrounding ALS relating to the role of Concussions in American football, recently a bit of news relating to the death of Kevin Turner (running back). I have made some edits to add this to the article. I welcome comments. I earlier put it in causes, and then User:Doc_James moved it to culture. I am unclear on how this should be reflected on this page. User:Doc_James said earlier on this talk page "The lead summarizes the article and thus deals with social cultural and historical aspects of disease." Is the NFL (which has activity that is being investigated as a "cause" for the disease (as a medical definition), the right location to put this? But if playing American Football has not be identified as a cause, then how should it be listed. Seeking feedback from editors. Thank you Jtbobwaysf (talk) 19:24, 26 March 2016 (UTC)

So if high quality secondary sources discuss concussions as a cause that would go in the cause section. If we only have lower quality source that talk about the social and cultural issues of players suing the NFL because they beleive what they have was caused by concussions while playing football than that goes lower IMO.

This is also popular press [3] Doc James (talk · contribs · email) 01:30, 27 March 2016 (UTC)

Understand now relating to Wikipedia:MEDRS. I have reverted and changed the citation to one that complies http://www.neurology.org/content/79/19/1970 which is written by CDC and NIOSH and published in American Academy of Neurology. I guess that is good enough. Jtbobwaysf (talk) 05:26, 27 March 2016 (UTC)

Popular press

In 2012 the NIOSH reported that NFL players had a four times greater risk of dying from ALS or Alzheimer’s disease.

The popular press is not a suitable source for medical content. Please see WP:MEDRS

References

Doc James (talk · contribs · email) 01:47, 27 March 2016 (UTC)

Understand now relating to Wikipedia:MEDRS. I have reverted and changed the citation to one that complies http://www.neurology.org/content/79/19/1970 which is written by CDC and NIOSH and published in American Academy of Neurology. I guess that is good enough. Jtbobwaysf (talk) 05:26, 27 March 2016 (UTC)

this dif used a primary source, not a secondary source per MEDRS and wildly misrepresented the source and the authors. It was not "written by CDC and NIOSH" and was notpublished by the American Academy of Neurology." Please see the note on your talk page. Jytdog (talk) 07:58, 27 March 2016 (UTC)

Hello (User:Jytdog), You replied under this popular press talk heading that Doc James made was because in an earlier edit I had used popular press. This citation you are discussing is not popular press. http://www.neurology.org/content/early/2012/09/05/WNL.0b013e31826daf50.abstract?sid=c8b6cd60-ca3a-47f3-b6f5-b676f943fca8 Anyhow, you reverted my edits to this page stating the citation didn't meet WP:MEDMOS for two problems. #1- I was attributing the name of the publication. Agreed, I will correct this and remove it. 2- you stated that this paper was primary research. It doesn't appear to me that this article meets the test for vanilla primary research, it certainly didn't involve any testtubes, needles, etc. This is a statistical analysis. WP:MEDMOS "Text that relies on primary sources should usually have minimal WP:WEIGHT, only be used to describe conclusions made by the source, and must describe these findings clearly so that checking can be made by editors without specialist knowledge." This content was added to section "other factors" following another statement that has no citation at all, therefore weight is already minimized. https://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis#Other_factors . Are you suggesting the content be moved further down the article into the NFL section to further minimize? I'm not debunking here, so your argument that primary research cannot be used isn't valid. It simply just must be used in accordance with WP:MEDMOS, particularly relating to weight, and it appears to me that it is. I'll move content down to the NFL section to further minimize the weight, if that is what you are asking for. #3 you stated that I wildly misrepresented the conclusion of the paper, well this is confusing as I quoted the conclusion almost verbatim. Maybe some other editors will also weight in on weight, as putting the content down in culture/football seems also a funny location to me. Please comment. Thanks Jtbobwaysf (talk) 09:21, 27 March 2016 (UTC)

It is a primary source. I will see if anything better exists. Doc James (talk · contribs · email) 10:41, 27 March 2016 (UTC)

Incorporating Recent Studies

Found one here http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978683/ Research is still tentative. Reason for association is unclear. Doc James (talk · contribs · email) 10:48, 27 March 2016 (UTC)

Hello James, thanks for that link. I added a new heading above as we have moved on from the popular press issue, per your assistance. I think the key point right now is how to include this information on the article. There are two studies under discussion currently:

1. NIOSH 2012 Neurodegenerative causes of death among retired National Football League players http://www.neurology.org/content/early/2012/09/05/WNL.0b013e31826daf50.abstract?sid=c8b6cd60-ca3a-47f3-b6f5-b676f943fca8 The study states (quote)

Conclusions: The neurodegenerative mortality of this cohort is 3 times higher than that of the general US population; that for 2 of the major neurodegenerative subcategories, AD and ALS, is 4 times higher. These results are consistent with recent studies that suggest an increased risk of neurodegenerative disease among football players.

2. NIH 2013 Epidemiology of neurodegeneration in American-style professional football players http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3978683/ The study states (quote)

Conclusions: There is considerable evidence that multiple and recurring concussive and subconcussive blows to the head can be deleterious to the brain and may result in neurodegeneration. However, a number of questions on how and why neurodegeneration may occur in football players still need to be answered: Is it based on the accumulation of multiple brain insults or caused by a cascade of events triggered by several severe brain injuries? Are there synergistic effects between genetic susceptibilities and brain injury? Why are neurologic impairments appearing in collegiate and early-career pros when it has been assumed that such effects were relegated to long-term pro players? Are there other environmental factors involved in neurodegeneration?

Confirming that repetitive head injuries, even if sub-concussive in nature, cause neuronal death that leads to CTE or other serious neurodegeneration will require additional studies using multiple study design methods. Additional studies that attempt to quantify the cumulative effects of head injuries - and, in particular, the relative effects of concussive- and subconcussive-level injuries - will be of particular importance in understanding the underlying disease mechanisms. Fully effective disease-prevention interventions will not be possible until more is known about the exposure-disease relationship.

Relating to the first study (NIOSH, above #1), WP:MEDMOS allows it to be included in the article entry as long as weighting is low (which it is in the society section), and since nothing is being debunked here. This is a statistical study and makes not attempt to prove causation, only document correlation. This secondary study (NIH #2 above) affirms the correlation and affirms cause has not been determined, User:Doc James has added this now. In both cases WP:MEDMOS allows these studies to be included, it only guides against debunking (doesn't apply here) and and it guides relating to weighting. Please comment. Thank you Jtbobwaysf (talk) 12:01, 27 March 2016 (UTC)

This is a primary source [4]. We should use the review.

The review states "Although the overall mortality of this cohort was significantly lower than expected, standardized mortality ratio (SMR) - the ratio of observed deaths in the NFL cohort to the expected deaths in the general US population - was 0.53, the neurodegenerative mortality was three times higher than that of the general US population, and those of two of the major neurodegenerative subcategories (Alzheimer's disease and ALS) were four times higher. Mortality from CTE could not be examined since it is not listed as a cause of death in any revision of the International Classification of Diseases." Doc James (talk · contribs · email) 15:25, 27 March 2016

We also have this review [5] Doc James (talk · contribs · email) 15:30, 27 March 2016 (UTC)

James, thank you for your assistance with this. I was advocating adding the article with primary research (the 2012 study) since that is the study that the NFL settlement (mentioned in the next paragraph) referenced. But if you are uncomfortable adding that because it is primary, it is no big deal. I think the general information is there regardless. Thanks again Jtbobwaysf (talk) 16:48, 27 March 2016 (UTC)

We have to be super careful here. NFL players are different from the rest of the population in many ways. Playing football is just one of them. We have correlations that football players appear to have a higher rate of neurodegenerative disease, but we don't know why. We cannot say anything attributing that correlation to them playing football or to things that happen while they play football. The content that Doc James added is fine. We do not need the primary source as there are reviews that cover it. Jytdog (talk) 18:58, 27 March 2016 (UTC)

It would be interesting to see if other sports were there are large numbers of concussions also have higher rates of neurodegerative disorders. How to separate out steroid use may be difficult. Doc James (talk · contribs · email) 07:51, 28 March 2016 (UTC)

yes, steroids is a big one, especially when they were younger. and one would imagine that football players generally physical people and there is off-season activity, etc. any number of confounders. Jytdog (talk) 08:08, 28 March 2016 (UTC)

Have moved some of it up to the cause and put it under the heading of "head injury". For significant head injuries the evidence of increased risk is fairly strong. Doc James (talk · contribs · email) 08:10, 28 March 2016 (UTC)

Hi @James Hare (NIOSH): Doc James and I added a bit of NFL content as ALS is often in the news relating to the NFL and concussions. If you or your team have anything more to add it would be great! Interesting to see Uncle Sam taking an interest in wikipedia these days...Thanks! Jtbobwaysf (talk) 14:48, 2 December 2016 (UTC)

life expectancy

The article states - About 10% survive longer than 10 years.[6] only 4% survive longer than 10 years.[26] — Preceding unsigned comment added by 71.212.171.14 (talk) 07:01, 5 June 2016 (UTC)

Thanks, corrected. — kashmiri ^TALK 10:51, 5 June 2016 (UTC)

Thanks Kashmiri, noticed the update today :) — Preceding unsigned comment added by 50.207.206.12 (talk) 07:33, 7 June 2016 (UTC)

Pesticides

"case-control studies provided strong evidence" does not appear to be supported by the references in question. Therefore adjusted the wording [6].Doc James (talk · contribs · email) 20:05, 15 June 2016 (UTC)

Neuron versus neurone

Simply two different way to spell the same word.[7] With or without the e does not make a difference. Doc James (talk · contribs · email) 19:50, 4 August 2016 (UTC)

What "other countries"??

The introduction says that this disease is called ALS (etc). Then it suddenly says "other countries", without any country having mentioned previously. Perhaps this could be fixed? I'm assuming we are not supposed to read en:WP with the assumption it only really applies to one country... Imaginatorium (talk) 17:22, 21 August 2016 (UTC)

Adjusted Doc James (talk · contribs · email) 03:10, 22 August 2016 (UTC)

perampanel

User:193.222.130.1 Right now per a pubmed search, we have one source for the notion that perampanel may be useful in ALS: PMID 27350567 - a primary source published early this year. For a host of reasons (see WP:Why MEDRS?) we don't generate content based on primary sources like this, nor do we generate content based on press releases about primary sources like this. We can wait until this is discussed in a literature review. This is all explained in WP:MEDRS itself. Jytdog (talk) 16:19, 30 August 2016 (UTC)

excuse for multiple editing, has been thinking that i just need to specify more precisely sources, not to do edit war. but i feel that primary sources from respected magazines (like nature) should be accepted. in literature review it can take yers - if so. excuse my english :) 193.222.130.1 (talk) 11:05, 2 September 2016 (UTC)

For important findings we typically see reviews in weeks to a couple of months. Does not usually take years. Look at Zika, Ebola, and the liberation procedure for MS. Doc James (talk · contribs · email) 11:53, 2 September 2016 (UTC)

Thanks for talking! Well, it takes as long as it takes. Wikipedia is not "cutting edge" for health or medicine; we are very conservative. If you want to keep up with the news on preclinical and clinical developments, the ALS Therapy Development Institute tracks all that stuff very closely. Jytdog (talk) 11:55, 2 September 2016 (UTC)

hello jytdog, i understand that wikipedia is not "cutting edge" for health or medicine. but there is no reason to remove info from perampanel page, especially when from als is no link to perampanel page and vice versa. and in fact nature is one from top 3 magazines in science. try to read full article ans contact not just authors but reviewers of the article. again: i understood your position in case of medicine article but in case of chemical substance your position is rigid. — Preceding unsigned comment added by 193.222.130.1 (talk) 15:08, 22 September 2016 (UTC)

The same "rules" apply to every page in Wikipedia. I have read the article. We need to wait for a review that discusses this. We are not a newspaper or a blog; these "rules" are part of what make us an encyclopedia. If you continue edit warring you are going to get blocked. Jytdog (talk) 16:06, 22 September 2016 (UTC)

yes, article has been reviewed, in fact nature magazine has one from the most strict and quality review process for articles. when you remain on "we need to wait for a review that discusses this" you don't understood what review process in magazines like this means. start educating yourself, this: http://www.nature.com/nature/authors/get_published/ is good start point. btw: what do you mean when you say "we need to wait for a review that discusses this"? can you be more explicit and define what criteria this 'review' should meet? — Preceding unsigned comment added by 193.222.130.1 (talk) 11:17, 23 September 2016 (UTC)

Please pay attention to the following which I have written several times and you are not hearing: in Wikipedia the article you want to cite is a primary source as described in WP:MEDRS. Please read MEDRS. If you do not understand MEDRS after you read, please ask a specific question. If you want to edit here you must engage with the guidelines. Jytdog (talk) 18:41, 23 September 2016 (UTC)

what do you mean as "primary source"? article in nature is primary source, authors did research and result they obtain they send to nature. nature did review and published it. from this point of view i don't understand what you mean by "primary"? — Preceding unsigned comment added by 193.222.130.1 (talk) 14:44, 20 October 2016 (UTC)

You have read at least part of MEDRS -- you write "article in nature is primary source," and you explain why, applying what is in the definitions section of MEDRS. What is your question exactly? Please rephrase. Jytdog (talk) 15:01, 20 October 2016 (UTC)

so, if in medrs is "Primary sources should generally not be used for medical content – as such sources often include unreliable or preliminary information, for example early in vitro results which don't hold in later clinical trials." than if perampanel will be tested in clinical trial is it possible to include information you have deleted? — Preceding unsigned comment added by 193.222.130.1 (talk) 11:55, 25 October 2016 (UTC)

Dispelling widespread confusion about terminal suffering

Extended content

Laypersons often interpret “respiratory failure” to mean “choking” and/or “suffocation” and therefore “terminal suffering.” This widespread inference is materially inaccurate. An encyclopedia should dispel, rather than enforce, the confusion that persists on this topic, especially since ALS figures prominently in debates concerning assisted dying. Accordingly, I propose adding the following to the “Late Stages” section of the article: For some people, death can be very sudden, before an obvious end stage is reached. Others experience a protracted final stage, which can last many weeks. But the most usual clinical picture is of rapid deterioration in respiratory function, often following an upper respiratory tract infection. [fn A professional’s guide to end of life care in motor neurone disease (MND) (http://www.mndassociation.org/wp-content/uploads/PX012-A-professionals-guide-to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf) (citing to Bäumer D, Talbot K and Turner MR., Advances in motor neurone disease, Journal of the Royal Society of Medicine. 2014; 107:14; End of life care in long term neurological conditions: a framework for implementation. National End of Life Care Programme: 2010.] Death in the majority of cases is very peaceful, following lengthening periods of sleepiness, gradually resulting in a coma. [fn Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616.] Under MND Association guidelines, ALS patients and their families should be “reassured that death from choking is exceptional and that death in the majority of cases is peaceful.” [fn A professional’s guide to end of life care in motor neurone disease (MND) (http://www.mndassociation.org/wp-content/uploads/PX012-A-professionals-guide-to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf) See also http://www.healthtalk.org/peoples-experiences/nerves-brain/motor-neurone-disease-mnd/thoughts-about-death-dying-and-bereavement; http://www.alsa.org/als-care/resources/publications-videos/factsheets/reasons-for-living-with-als.html ("Data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project suggest that most people die peacefully with this disease.”) Accord http://alsn.mda.org/article/peaceful-passing.] The foregoing text is word for word from the MND Association’s guide for professionals and should not require any editing. We cannot use text from others word for word unless it is under a compatible license because that would be a copyright issue. Also we tend to use sources as outlined by WP:MEDRS. "very peaceful" would want a better source for that. Doc James (talk · contribs · email) 19:43, 12 September 2016 (UTC) The MND Association makes its content freely available and encourages dissemination, so there is no copyright issue and is a clear "fair use" of the well-worded text, especially since attribution is given to the cited source. As for the word “very,” it is used by the MND Association, but I agree it is proper to omit “very” because the word does not appear in the cited reference. https://www.researchgate.net/profile/Maria_Wasner/publication/11827693_The_course_of_the_terminal_phase_in_patients_with_amyotrophic_lateral_sclerosis/links/0fcfd50fd09fd4bee7000000.pdf. That also solves the perceived copyright issue. There is a difference between "freely avaliable" and "freely licensed". We do not accept "fair use" text. Please read WP:Fair use Doc James (talk · contribs · email) 00:56, 13 September 2016 (UTC) That source doesn't comply with the [{WP:MEDRS]] guideline - please do read it and if you don't undertstand it, please ask. Thanks. Jytdog (talk) 02:35, 13 September 2016 (UTC) Thank you for offering to help if I don’t understand. The Journal of Neurology and the Journal of the Royal Society of Medicine are peer-reviewed journals. The other sources are worthwhile references as they are published the ALS Association, MDA/ALS, and the MND Association, which are highly reliable sources of information concerning ALS and are in accord with the cited peer reviewed articles. Wikipedia is not a medical treatise. Where there is a question about what to do, Wikipedia encourages writers to see what is done in other similar situations. There are other examples of Wikipedia references to non-peer reviewed "[disease] Association" publications where the Association is considered an authoritative source of information. For example, the Wikipedia page for Alzheimer's Disease cites to an Alzheimer's Association article entitled "While scientists know Alzheimer's disease involves progressive brain cell failure, the reason cells fail isn't clear" as authority for the statement, “The cause for most Alzheimer's cases is still mostly unknown except for 1% to 5% of cases where genetic differences have been identified.” See https://en.wikipedia.org/wiki/Alzheimer%27s_disease#cite_note-33. Likewise, the Wikipedia page for Cardiovascular disease cites to an American Heart Association pamphlet entitled "Understand Your Risk of Heart Attack" as authority for the statement, "It is estimated that 82 percent of people who die of coronary heart disease are 65 and older." See http://www.heart.org/HEARTORG/Conditions/HeartAttack/UnderstandYourRiskofHeartAttack/Understand-Your-Risk-of-Heart-Attack_UCM_002040_Article.jsp#; https://en.m.wikipedia.org/wiki/Cardiovascular_disease. The MND Association publication referenced here cites to peer reviewed articles, and the reality is the publications of the ALS Association, MDA/ALS, and MND Association are written by and relied on by the most experienced ALS experts in the world. So I respectfully disagree that there is a basis for objecting to any of the proposed citations, which are informative and helpful. Regarding copyright issues, according to WP:Fair use, "Non-free content can be used in articles only if: 1. Its usage would be considered fair use in United States copyright law and also complies with the Non-free content criteria; 2. It is used for a purpose that cannot be fulfilled by free material (text or images, existing or to be created); and 3. It has a valid rationale indicating why its usage would be considered fair use within Wikipedia policy and US law." Under U.S. copyright law, "whether the use made of a work in any particular case is a fair use the factors to be considered shall include (1) the purpose and character of the use, including whether such use is of a commercial nature or is for non-profit educational purposes; (2) the nature of the copyrighted work; (3) the amount and substantiality of the portion used in relation to the copyrighted work as a whole; and (4) the effect of the use upon the potential market for or value of the copyrighted work." Under WP:NFCC, "Non-free content is used only where no free equivalent is available, or could be created, that would serve the same encyclopedic purpose." I remain convinced there is no copyright issue here of any kind, nor any concern about the reliability of the cited sources. Nevertheless, in the spirit of cooperation, I offer the following revised text, with the peer reviewed articles as the primary references:

The most common clinical picture is of rapid deterioration in respiratory function, often following an upper respiratory tract infection, although for some people death can be very sudden, before an obvious end stage is reached. Others experience a protracted final stage, which can last many weeks. Death in the majority of cases is peaceful, following lengthening periods of sleepiness, gradually resulting in a coma. Researchers and clinicians recommend that to relieve unwarranted fears and increase the quality of life of ALS patients and their relatives, they should be informed proactively that death from choking is exceptional and that death in the majority of cases is peaceful.

References

— Preceding unsigned comment added by 104.129.192.56 (talk) 20:01, 15 September 2016 (UTC)

Extended content

The sourcing doesn't comply with WP:MEDRS. If you would like help understanding MEDRS, please ask. Jytdog (talk) 20:11, 15 September 2016 (UTC) How specifically does the sourcing not comply with WP:MEDRS? Please read MEDRS and ask me a specific question. You need to engage with the guidelines if you want to work here. Jytdog (talk) 21:24, 15 September 2016 (UTC) I have read the guidelines from top to bottom and from bottom to top. "The sourcing doesn't comply with WP:MEDRS" is an overly broad statement and not informative enough to invite any question more specific than "How so?" It is really obvious, so let me turn that around - in what way do they comply with MEDRS? Jytdog (talk) 21:43, 15 September 2016 (UTC) The sources cited are reliable secondary sources and accurately reflect current knowledge. They are published in reputable medical journals, written by experts in the relevant fields, and include statements from national or international expert bodies, who all arrive at the same conclusion. As for the additional sources cited, they are introduced appropriately in accordance with convention: "See also" means that the cited authority is an additional source that supports the position. “Accord” means “I just cited something that supports my proposition, and now here's another thing that supports it too.” All of these are helpful to the reader who wants to learn about the subject at hand, and if there is any better authority on the topic, or any contrary authority at all, I haven't found it. — Preceding unsigned comment added by 104.129.192.56 (talk) 22:21, 15 September 2016 (UTC)

MEDRS analysis

No. MEDRS says we use recent (less than five years old) reviews published in good journals, or statements from major medical/scientific bodies. Here are the refs and after that, how they are analyzed under MEDRS:

1. Bäumer D, Talbot K and Turner MR., Advances in motor neurone disease, Journal of the Royal Society of Medicine. 2014; 107:14;
2. End of life care in long term neurological conditions: a framework for implementation. National End of Life Care Programme: 2010.
3. See also “A professional’s guide to end of life care in motor neurone disease (MND)” (http://www.mndassociation.org/wp-content/uploads/PX012-A-professionals-guide-to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf)
4. Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616 (defining "a good or peaceful death as the type of death one would choose if there were a choice. . . . The most important result, confirming clinical experience, is that the vast majority of ALS patients (G 88%, UK 98%; p=0.11) died peacefully and no patient 'choked to death' ")
5. See also “A professional’s guide to end of life care in motor neurone disease (MND)” (http://www.mndassociation.org/wp-content/uploads/PX012-A-professionals-guide-to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf);
6. http://www.healthtalk.org/peoples-experiences/nerves-brain/motor-neurone-disease-mnd/thoughts-about-death-dying-and-bereavement;
7. http://www.alsa.org/als-care/resources/publications-videos/factsheets/reasons-for-living-with-als.html ("Data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project suggest that most people die peacefully with this disease.”)
8. Accord http://alsn.mda.org/article/peaceful-passing.

Looking at these, now:

1) Bäumer D, Talbot K is PMID 24399773 - this does comply with MEDRS; recent review. It says "Death in ALS is typically due to gradual ventilatory failure"

2) Unclear what this is. Appears to be this, but the document I just linked is from 2011 not 2010. Looking the document I just linked, this is at least partly from major medical body (NHS). So, can argue it falls under MEDRS. Says: "the terminal phase can be short or sudden in conditions where the predominant mechanism of death is respiratory failure, as in MND..."

3) this is from a patient advocacy group, which is not a major medical or scientific body. Fails MEDRS.

4) Neudert C., is PMID 11518004 - a very old (15 years) primary source. Fails MEDRS.

5) Same as #3

6) site with a bunch of self-generated content. This fails the basic WP:RS guideline so completely fails WP:MEDRS

7) same problem as #3/5

8) same problem as #7 and #3/5

so of those refs #1 is definitely fine and #2 is probably OK. Relying on those, we could say ""Death in ALS is typically due to gradual ventilatory failure but may be sudden". I am reading two recent reviews now, PMID 27521200 and PMID 27514291 to see if they have anything more to say. Jytdog (talk) 23:40, 15 September 2016 (UTC)

Your analysis is too narrow, missing the forest for the trees. ALS is an orphan disease and, as such, is not the subject of as many papers as most other medical topics. Applying a 5-year limit on research papers relating to ALS is arbitrary (under the circumstances) and unreasonable. The Neudert paper, which is considered highly authoritative by practitioners in the ALS community, is, in fact, secondary. It was Wisdom Hospice, not Neudert and his team, that collected information regarding ALS patients who died in Rochester, UK over the course of a decade. The data from Wisdom Hospice was primary. Neudert's reporting of it is, by definition, secondary. The data Neudert himself obtained concerning a separate population of ALS patients in Munich convincingly confirmed the findings of Wisdom Hospice. As such, his paper has all of the indicia of reliability of a secondary source. Add to this the data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project, which likewise indicates that most people die peacefully with this disease, and you can see why this topic is not the subject of further research: the data from multiple studies all show the same results very convincingly, and ALS researchers have devoted their very limited resources to move on to questions that have not already been settled about the disease. Your characterization of the MND Association as a "patient advocacy group" is not accurate. It is a research organization that commissions, undertakes, promotes, monitors, and manages research into all aspects of motor neuron disease and its associated conditions and publishes and disseminate the useful results for the benefit of the public. In the ALS community, the MND Association, ALSA, and MDS/ALS are the main hubs of research, and their statements are considered authoritative.

Stating that the usual cause of an ALS patient's death is respiratory failure is inherently misleading and confusing to the average reader, invariably leading to the natural (albeit illogical) inference that death will be from choking and/or suffocation. When the information is only offered in part, it is like serving a tennis ball without following through--the ball hits the net and the other side--ignorance--scores a point. Your devotion to MEDRS is laudable, but MEDRS is not a perfect set of rules, and in this case good judgment dictates adhering to the even more laudable goal of ensuring that the reader is better instructed, and that ALS patients and their families who are trying to find out what is happening to them, and who turn to Wikipedia for answers, will not come away from the article with unwarranted fears of terminal suffering. Instead, the generally accepted findings of the relevant medical community should be reported, and the footnotes should provide the reader with other useful information resources.

This is a situation where lack of quality information in a Wikipedia article actually causes severely disabled people and their families to suffer unnecessarily. Their troubles are already beyond most people's comprehension, and it does not help them--or anyone--to print statements that cause them unnecessary anxiety and fear about their expected manner of death. Therefore, I urge you to confer with one or more neurologists who practice in certified ALS multidisciplinary clinics before commenting further on whether the sources are reliable. — Preceding unsigned comment added by 104.129.192.54 (talk) 00:51, 18 September 2016 (UTC)

No it is not too narrow. It is how we work here in WP. I understand you are passionate about this issue but if you want to work here, you have to follow the policies and guidelines here. As I said I am reviewing the other 2 reviews I found; i am hopeful that we will be able to improve this content. Jytdog (talk) 01:33, 18 September 2016 (UTC)

•  Done OK, the NHS choices site has content directly on this, and I added content based on that in this dif. Took some time for me to find a MEDRS source that really talked about dying and NHS choices is top-drawer MEDRS. Jytdog (talk) 08:25, 18 September 2016 (UTC)

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incidence rate change

I just updated the incidence rate from 2 per 100k per year to 4 per 100k per year. In doing so, I included newer data, so I think the change is justified. But the new data source is USA-centric, whereas the old data source had info from europe as well. I'm including the old data source here in case others want to reintroduce the older incidence rate for europe in the article. — Eric Herboso 17:35, 3 November 2016 (UTC)

The number you are looking at is prevalence not incidence so I restored. Doc James (talk · contribs · email) 07:11, 4 November 2016 (UTC)

Stem cell content

User:107.194.72.223 the content you've added here and here and here and here is based on sources that do not comply with WP:MEDRS. You've been given information about MEDRS on your talk page; if you don't understand it please ask. Thanks. Jytdog (talk) 15:40, 1 December 2016 (UTC)

Stem cell therapy for ALS has become a political issue https://www.washingtonpost.com/opinions/the-man-who-beat-lou-gehrigs-disease/2017/01/03/5cf898e4-d1b4-11e6-945a-76f69a399dd5_story.html The man who beat Lou Gehrig’s disease, By Marc A. Thiessen, Washington Post, January 3, 2017. Researchers like Jonathan Glass has claimed in TED talks http://www.tedmed.com/speakers/show?id=6596&ref=talks that the FDA doesn't allow him to give possibly life-saving treatments to his patients (and violating the free choice of his patients) because the FDA is too risk-adverse. I came to this page because I wanted to see what the current status of stem cell research, including Glass', actually was. I think this political debate is WP:NOTABLE, because it's been discussed so much in WP:RS, and the general issue of FDA authorization of compassionate use has been written about in many major journals. I think it belongs in this entry, even if we say that it is only supported by Phase I studies, and give an authoritative source explaining why they think Thiessen and Glass are wrong. A paragraph evaluating stem cell therapy in a recent review article would certainly qualify, but the debate about Right to Try laws is a social-political issue for which sources outside the peer-reviewed medical literature are acceptable. --Nbauman (talk) 21:44, 4 January 2017 (UTC)

I added a review that included a phase one clinical trial that glass partook in. The washington post and temed articles are over-exaggerated. I also added a cochrane review on the subject.Petergstrom (talk) 01:51, 5 January 2017 (UTC)

Edits by 46.126.153.153

these three difs added the following unsourced, editorialing content: " It is important to note that they die due to a CO₂-narcosis during the night: they do not suffer, there is no agony." Jytdog (talk) 21:26, 1 December 2016 (UTC)

speech therapy

With disease progression, the focus for speech therapy is more management and compensation. Energy conservation and speech compensation strategies are targeted. — Preceding unsigned comment added by Jacquelinealvarado (talk • contribs) 15:56, 2 December 2016 (UTC)

there is in addition some back and forth on speech therapy going on.

• content added by Abrust1692
• copyvio removed and trimmmed by doc james
• content about speech therapy based on spammy source by 148.166.224.219

Lots going on for some reason. Three separate strains of editing with poor refs.. Jytdog (talk) 21:39, 1 December 2016 (UTC)

Yes working on this one. Will be blocking the University for a few weeks if issues persist. Doc James (talk · contribs · email) 21:54, 1 December 2016 (UTC)

Grammatical observation in image caption

The caption for the image in the Therapy section reads: "[...] by pointing to letters and words using an head mounted laser pointer." The text should be changed to read: "a head mounted" instead of "an head mounted".

• When to use "a" vs. "an" : grammar.com
• Definition and pronunciation of "head" : dictionary.com

Matthewclower (talk) 19:02, 2 December 2016 (UTC)

Fixed. Thanks for pointing this out.-gadfium 20:39, 2 December 2016 (UTC)

Pathophysiology

The 3 paragraphs below were removed as speculations and/or hypotheses. The Pathophysiology section should present the established facts supported by WP:MEDRS-quality sources. The sources in the removed section are not. --Zefr (talk) 06:14, 18 January 2017 (UTC)

There is no policy against having hypothesis in the pathophysiology sections. I will add a research subsection.Petergstrom (talk) 06:33, 18 January 2017 (UTC)

Removed content/sources

Mitochondrial abnormalities, such as increased free radical production and impaired ATP production, have been observed but these mechanisms are unproven causes of ALS. SOD1 and TDP-43 mutations may play a role in causing mitochondria dysfunction.

Increased markers of oxidative stress have been observed in sporadic cases of ALS, including 8-Oxo-2'-deoxyguanosine and 4-Hydroxynonenal. This hypothesis is further supported by various risk factors observed for ALS, such as trauma and exposure to certain chemicals that may play a role in increasing oxidative stress. However, failed trials with anti-oxidants and methodological limitation limit the hypothesis. One proposed mechanism of ALS incorporating both the genetic mutations of RNA binding proteins and oxidative stress, suggests that with age cells lose their ability to buffer against the genetic changes due to increasing oxidative stress resulting in the death of sensitive cells.

Given the co-occurence and symptomatic overlap with frontotemporal dementia, they may share an underlying pathophysiology, such as dysreguated microRNA activity(possibly originating in a TDP-43 mutation.) However authors cautioned against assuming a causal role of microRNA dysregulation.

References

NEJM

doi:10.1056/NEJMra1603471 JFW | T@lk 17:31, 13 July 2017 (UTC)

Motor neurone disease

They say "Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS), "[8] Doc James (talk · contribs · email) 18:19, 16 September 2017 (UTC)

"Expected to die within two years"

<<removed that Hawking is "expected to die within two years". Prognosis is ever changing, and even if it were accurate, statement would quickly become out of date.>>

That statement was saying that Stephen Hawking was expected to die within two years when he was diagnosed with ALS back in 1963. It wasn't referring to the present time. I've added it back in and made it clearer. 2602:306:3653:8440:38A5:C278:1C8E:4B47 (talk) 01:48, 27 October 2017 (UTC)

The source here doesn't seem to specify such a precise post-diagnosis term as 2 years. I modified the article here to be less specific by saying "within a short time". --Zefr (talk) 02:26, 27 October 2017 (UTC)

Have shortened it. The discussion of Hawkings life expectancy can either go in the article about him or in the body. Doc James (talk · contribs · email) 20:05, 27 October 2017 (UTC)

Massive changes

This change added a lot of primary sources.[9]

I have reverted and tried to keep the secondary sources.

With respect to this "however, there are several known risk factors associated with ALS including increased age, smoking, low Body Mass Index and military deployment"

However the source says "It is not clear whether having higher levels of physical activity raises the risk of ALS and, if it does, whether it is the activity itself or being genetically predisposed to high sporting prowess that is the mechanism"

I have moved it to the body of the article as it is tentative at best. Doc James (talk · contribs · email) 01:12, 1 November 2017 (UTC)

F1000 is also a journal without academic editors and thus it no impact factor.[10] Meaning we should use it with care. Doc James (talk · contribs · email) 01:15, 1 November 2017 (UTC)

age at onset

we need sourced content about this in the body. i had originally put it in the signs and symptoms; doc james moved it to epidemiology; zefr removed it.

where does this belong? i am a bit unclear per MEDMOS. but it must be in the body. It cannot be just in the lead and infobox.

the content is

The disease can effect people at any age, but usually starts around the ages of 58 to 63 years for sporadic disease and 47 to 52 years for familial disease.

References

-- Jytdog (talk) 00:46, 22 December 2017 (UTC)

I didn't remove it, but rather placed it in the first paragraph under Epidemiology here. --Zefr (talk) 00:57, 22 December 2017 (UTC)

so you did. thanks and sorry. Jytdog (talk) 01:57, 22 December 2017 (UTC)

Trivia

No evidence that these have had a significant impact on the condition in question. They can be mentioned at the TV show in question.

"ALS has been discussed and depicted late in the second season of Stargate Universe science fiction series, particularly in episode "Epilogue (Part 2)", which first aired on 25 April 2011.

ALS is the central topic of the 2014 movie You're Not You, directed by George C. Wolfe, with Hilary Swank, Emmy Rossum and Josh Duhamel playing the main characters.

HBO's VICE, covered ALS in Season 4 Episode 16: Die Trying.

ALS becomes a topic in season 2 of Jessica Jones, where Jeri Hogarth (Carrie-Anne Moss) learns she has been diagnosed with the illness."

References

Doc James (talk · contribs · email) 19:21, 9 March 2018 (UTC)

agreed. Jytdog (talk) 20:59, 9 March 2018 (UTC)

Survival records

it would be interesting to have a table of the longest survival after diagnosis, if that data is available for other outliers than Hawking as well TheFIST (talk) 15:57, 15 March 2018 (UTC)

Recent research

@Doc James and Jytdog: there's a lay summary at [11] of a research article at [12] which suggests there is some evidence for the underlying causes of cell death in ALS. Whether this can be added to the article, I'm not sure: the article in Cell seems to me substantially more tentative than the lay summary. Peter coxhead (talk) 09:49, 17 May 2018 (UTC)

interesting! Jtbobwaysf (talk) 11:59, 17 May 2018 (UTC)

The first is a university press release; the second is a primary source. Please see WP:MEDREV. Universities hype their faculty's research all the time. Please wait to see how this is handled in reviews. Thanks for asking! Jytdog (talk) 15:36, 17 May 2018 (UTC)

@Jytdog: oh, I'm well aware of how universities hype research. I'm also aware that the Cell paper is a primary source. However, it does seem to be part of a wider research programme that is moving towards an understanding of the underlying basis of ALS, which seems to be new and interesting. It's not clear to me that WP:MEDREV really applies if no claim is made of any direct medical significance. Let's see if secondary sources appear. Peter coxhead (talk) 20:31, 17 May 2018 (UTC)

Yes research sections should be directions, not specific findings. See this section of MEDMOS, where addition of primary sources to research sections is somewhat... sharply characterized. If there is a review discussing this direction that would be wonderful. Jytdog (talk) 20:33, 17 May 2018 (UTC)

I just went and looked and addd some content to the genetic causes section. there is stuff about mutations but not about methylation. i agree it is super interesting! (also very hard to figure out how one might drug that, but still!) Jytdog (talk) 20:54, 17 May 2018 (UTC)

I just found PMID 24011641 which is a view from 2013. Will add something on that to research! Jytdog (talk) 20:58, 17 May 2018 (UTC)

Thanks! Good to see something added about this. Peter coxhead (talk) 21:39, 17 May 2018 (UTC)

Proposed overhaul of article

I’m a medical student at the Medical College of Wisconsin in Milwaukee. I convinced my school to let me improve Wikipedia’s article on ALS to GA status as part of a required research project. I’ve been on Wikipedia since 2013, so I’m pretty familiar with wikicode and Wikipedia’s policies. While I look up medical information on Wikipedia frequently and fix typos as I find them, I’ve never substantially improved an article on a major disease like ALS before.

So, I read WP:MEDMOS and WP:MEDRS to prepare myself for working on the article, and I feel like I have a fairly good idea of what the ideal sources for medical content on Wikipedia are: recent literature reviews, systematic reviews, meta-analyses, and Cochrane reviews. Additionally, through my medical school I have access to the full text of most peer-reviewed medical journals. I only received permission from my school to start editing the article yesterday (Wednesday, July 11), so my plan is to improve it as much as I can until classes start up again on Monday, August 13. I’ll then nominate it for GA status sometime this fall; I have until May 2019 to finish the research project.

Anyway, given that the ALS article receives over 2 million page views a year and consistently ranks in the 100 most popular medical articles on Wikipedia, I thought it would be considerate to let other editors who watch this page know about my plans before I begin a major rewrite. Speaking of which, I’ve listed my ideas for improving the article below. I welcome any suggestions that you may have. AmericanLemming (talk) 04:23, 12 July 2018 (UTC)

Ideas for improving the article

The article is in need of improvement: it covers many aspects of the topic superficially, still has some primary sources that haven’t been replaced with reviews, and is out of date in many places. In particular, many older reviews (especially those from the late 1990s or early 2000s) need to be replaced with newer reviews with updated information. There are sections that have many unsourced statements, like the “Management” section (especially the “Breathing support” and “End of life” subsections) and the “History” section.

The “Genetics” subsection needs to be expanded and updated, as do the “Pathophysiology,” “Epidemiology” and “History” sections, using recent literature reviews. I feel like the “Causes” and “Management” sections would both benefit from a short summary paragraph at the very beginning of the section. Speaking of “Causes,” giving “Head injury” its own subsection is undue weight, as no environmental risk factor has been found to be strongly associated with ALS (with the possible exception of smoking). I think the “Causes” section would be best divided into two subsections, one on “Genetics” and the other on “Environmental factors.”

Also, there are a number of important omissions in the article at present, including genetic testing (which I would give a short subsection under “Diagnosis”), gene therapy and antisense oligonucleotides (which I would mention briefly in the “Treatments” subsection of “Research”), and prognosis (which I would give its own short section). Again, I’m open to suggestions, criticisms, and the like; you may have your own ideas about how to improve the article, and they could very well be better than mine! AmericanLemming (talk) 04:24, 12 July 2018 (UTC)

Both this comment and the one above are great (and I mean that - dead-on good). I will do what i can to help. Thanks! Jytdog (talk) 04:36, 12 July 2018 (UTC)

Genetics Section

Couple of comments: 1. @AmericanLemming: This section has a sub-article Genetics of amyotrophic lateral sclerosis, so most of this content should be moved off per policy. Looks way too detailed right now given there is a sub article.

I'm fine with that; I'm just not sure how much to move. Right now I've got descriptions of the four most common genes in ALS (C9orf72, SOD1, FUS, and TARBDP) and a somewhat long paragraph on ALS-FTD genetics. I'll definitely move the FUS and TARBDP descriptions to the sub article because they both account for only 1-5% of familial ALS. I'd like to keep the descriptions of C9orf72 and SOD1 because they account for 40% and 12-20% of familial ALS, respectively; however, I'll shorten the section on C9orf72. I think I'll also condense the paragraph on ALS-FTD genetics and combine it with the C9orf72 section; it probably makes more sense to discuss it there. Anyway, let me know whether that's enough trimming. AmericanLemming (talk) 20:37, 13 July 2018 (UTC)

IMO simple mention the genes is sufficient and everything after "required to cause disease" could be moved to the subpage. Doc James (talk · contribs · email) 21:18, 13 July 2018 (UTC)

I've moved everything after the first paragraph to the subpage, but I then wrote a short, second paragraph explaining the genetic, clinical, and pathological overlap between ALS and FTD. I'm not sure the "Genetics" subsection is the best place to put it, but we definitely need a paragraph on the FTD-ALS disease continuum somewhere in the article, because practically every review of ALS genetics after 2011 discusses it in detail. AmericanLemming (talk) 23:57, 13 July 2018 (UTC)

2. @Doc James: First sentence says: "About 5–10% of cases of ALS are familial, meaning that the disease is directly inherited from a person's parents." Does this really mean it is directly inherited, or does it mean that there is a relationship?

Thanks! Jtbobwaysf (talk) 20:18, 13 July 2018 (UTC)

Have removed "directly" Doc James (talk · contribs · email) 21:18, 13 July 2018 (UTC)

"Environmental factors" section

I’m beginning to think that I got carried away with summarizing the literature on potential environmental factors and ALS, even though I’ve been relying exclusively on literature reviews, systematic reviews, and meta-analyses. Given that genetic and environmental causes are thought to be of roughly equal importance in ALS, it stands to reason that their sections in the article should also be of roughly equal length. Right now, the “Environmental factors” subsection is 614 words long, while the “Genetics” subsection is 187 words long. And I’m not done: I’ve only summarized the reviews covering head trauma, physical activity, and smoking; I still haven’t covered military service, pesticides, and occupation, each of which has two or more recent reviews. At this rate, “Environmental factors” is going to be 900–1000 words long by the time I’m finished, which would definitely be undue weight.

My proposed solution is to start a new section in the Amyotrophic lateral sclerosis research article called “Potential risk factors”, move most of the current “Environmental factors” section there, and then present a brief summary in the main ALS article. The other option would be to simply condense the section down to a brief summary without moving it elsewhere. Anyway, I thought I should get some input from other editors before making any more changes to the “Environmental factors” section. AmericanLemming (talk) 02:14, 21 July 2018 (UTC)

Sports section

@AmericanLemming: do you know what happened to the NFL, military, and other head injury content on this article? Jtbobwaysf (talk) 05:30, 9 August 2018 (UTC)

I deleted most of the "Head injury" section and then merged what was left with the "Other factors" section to form a new section on "Environmental factors."

I felt it was undue weight to give head injury its own section, given that the association between head injury and ALS is tentative; currently, the second paragraph in the "Environmental factors" section discusses head trauma briefly.

I deleted everything about the NFL because few of the reviews I found on ALS epidemiology even discussed the relationship between American football and ALS. While there is a strong association between chronic traumatic encephalopathy and playing in the NFL, the association between the NFL and ALS is more tenuous. Given the uncertain relationship between the NFL and ALS and the minimal discussion in the reviews, I thought it was undue weight to have two paragraphs devoted to discussing it. Note that American football is mentioned briefly in the paragraph on physical activity and ALS ("American football and soccer are possibly associated with ALS"). Also, here's a summary of all the reviews from the past 20 years examining the possible association between head injury/trauma and ALS. (Note that DocJames removed the oldest three reviews, which is why they're not currently in the article.) AmericanLemming (talk) 14:58, 9 August 2018 (UTC)

"A 2007 review concluded that trauma was probably not a risk factor for ALS. A different 2007 review and meta-analysis found a tentative association between recent, repeated head injuries and ALS. A 2012 review found insufficient evidence to conclude that there was an association between head trauma and ALS, because the results of studies showing such an association could be due to chance. A 2017 meta-analysis of 16 studies concluded that there was a statistically significant association between head injuries and ALS; however, this association disappeared when the authors considered the possibility of reverse causation, which is the idea that head injuries are an early symptom of undiagnosed ALS, rather than the cause of ALS."

Are there any other sections that you blanked? Jtbobwaysf (talk) 15:34, 9 August 2018 (UTC)

The "Head injury" section is the only one where I deleted both the title and most of the content. I kept all the content from the "Other factors" section, deleted the title, and moved it into the new "Environmental factors" section.

There have been other sections where I've replaced part or most of the content with newer, more reliable sources but still kept the section title ("Genetics", "Pathophysiology", "Medications", "Breathing support"). I've greatly expanded the "Classification" section but kept all the pre-existing content. I've slightly expanded the "History" section and kept all the pre-existing content.

I haven't done anything with the "Signs and symptoms", "Diagnosis", "Epidemiology", "Society and culture", and "Research" sections, and I probably won't get around to working on those at all, seeing as medical school starts up again on Monday, August 13. With my remaining few days to improve the article, I will replace the entire content of "End-of-life care" section but keep the title (the current section has no sources) and expand the "Nutrition" section. AmericanLemming (talk) 19:11, 9 August 2018 (UTC)

References

In this edit [13] you removed the mention of the NFL settlement and said this content was more suited for the CTE article. Did you add the content at the CTE article? Why do you find it more relevent there? It seems to mention ALS directly in the source.

In this edit [14] you removed the studies about ALS saying they were more related to CTE. Are these studies not related to ALS?

In this edit [15] you stated "traumatic brain injury is not a well-established risk factor for ALS; different reviews have come to different conclusions on the matter." Please explain this.

I see above you are going to stop your edits in the next few days? I think the environmental factors relating to these unknown possibilities that have been covered in RS, should be included. After all we are dealing with a disease where the root cause is seemingly unknown, thus we should give some weight to each of the possibilities that we have RS for. If we do not, it would be an NPOV issue. Jtbobwaysf (talk) 11:59, 10 August 2018 (UTC)

Discussion continued

To answer your first two questions, reflecting on those edits, I think I overreacted in removing the entire discussion of the potential link between American football and ALS. It was undue weight to have give "Head injury" its own section with two paragraphs on the NFL, but I fixed that by expanding the discussion on the other potential environmental causes of ALS. It wasn't necessary to delete the NFL content like I did; I could have just moved it into the "Environmental factors" section. The consequence of deleting it was that the article didn't do justice to a topic that is discussed, albeit briefly, in multiple literature reviews on ALS epidemiology and in multiple literature reviews on the link between traumatic brain injury and neurodegeneration in NFL players. I didn't add the NFL settlement to the CTE article; in hindsight, I should have. I still feel that discussing it in the "Causes" section is straying off topic; if it were to be re-added to the article, I would prefer to put it in "History" or "Society and culture."

As for your third question, it was my understanding that head injury and head trauma were the same thing, or at least they seem to be used interchangeably in ALS epidemiology reviews. The 2015 review "Epidemiology of mild traumatic brain injury and neurodegenerative disease" (which is still in the article) says in the abstract that "more severe traumatic brain injury (TBI) is a well-established risk factor for a variety of neurodegenerative diseases including Alzheimer's disease, Parkinson's disease, and amyotrophic lateral sclerosis (ALS)." It backs up that claim for ALS by citing the 2007 review "Head injury and amyotrophic lateral sclerosis." However, other reviews on the relationship between head injury/trauma and ALS have come to different conclusions, or at least more tentative conclusions, which are summarized in the quote above.

To respond to your final point, I do think that the article should have a short paragraph on the potential link between American football and ALS; this morning I found half a dozen literature reviews on American football and neurodegeneration, which all discuss ALS briefly. Clearly, to give the topic the same amount of coverage as it gets in RS, we need more than a single sentence. My preference would be to add the second paragraph of the old "Head injury" section to the "Environmental factors" section, and to add the third paragraph of the old "Head injury" section, which is on the NFL settlement, to the CTE article and/or to the "History" section of this article. AmericanLemming (talk) 20:07, 10 August 2018 (UTC)

I agree and support your suggestion to add the second paragraph. I guess (I have no basis for this guess FYI) that a decent percentage of traffic to this article comes from NFL and other sports-related coverage, as sports is often covered in mainstream media. Therefore, it is of service to the reader that we do our best to cover it as well and neutrally as we can. I think your research and comments on this talk page does a great job to say where there is agreement and disagreement in the sources, and this would be useful to the reader for us to include. I think weight is probably not a big issue, as there is probably also a lot of weight in mainstream press that is about sports and the famous sports figures that have ALS and CTE (whether or not they are actually connected from a medical standpoint). Thanks for your comments and being so willing to discuss! Jtbobwaysf (talk) 20:23, 10 August 2018 (UTC)

@AmericanLemming: I wanted to note that that this statement "Playing American football or soccer" sounds confusing to me. American footbal is the NFL, however European football is soccer. Thanks! Jtbobwaysf (talk) 20:10, 11 August 2018 (UTC)

Thanks for letting me know. It made sense to me when I wrote it, but I see how it could be confusing. I've changed it to "Playing soccer or American football," which I think is clearer. AmericanLemming (talk) 20:34, 11 August 2018 (UTC)

Citation does not support claim

For the paragraph where it says that "although bladder and bowel function and the muscles responsible for eye movement are usually spared until the final stages of the disorder." (in Signs and symptoms), the citation does not specify that eye movement is usually spared. I couldn't find any publication that supports that hypothesis. Only did I find several sentences among the lines that it is commonsense... — Preceding unsigned comment added by 192.124.26.251 (talk) 09:41, 8 October 2018 (UTC)

You are correct. It just says, "According to one cohort study, other types of neurological dysfunction, including ataxia and autonomic dysfunction, were observed in 14% of patients with ALS. Individuals with these additional problems also had a poor prognosis." The source the review gives for that statement, "ALS-Plus syndrome: non-pyramidal features in a large ALS cohort" (2014), says that "Ocular motor neurons are generally said to be unaffected in ALS, and disorders of ocular motility usually present in patients with prolonged survival," but then states that in the cohort studied about 10% of patients with ALS had ocular motor dysfunction.

Also, I found another source, "A Systematic Review of the Effect of Moderate Intensity Exercise on Function and Disease Progression in Amyotrophic Lateral Sclerosis" (2009), which states that "In ALS, there is usually sparing of the sensory system and preservation of oculomotor, bowel, and bladder functions." I'll add both sources to the article either later today or tomorrow. Thanks for pointing it out! AmericanLemming (talk) 16:50, 8 October 2018 (UTC)

Thank you (it's me again). Please note that "A Systematic Review of the Effect of Moderate Intensity Exercise on Function and Disease Progression in Amyotrophic Lateral Sclerosis" (2009), which you have specified, itself only cites that sentence. The real source is Francis, K., Bach, J. R., & DeLisa, J. A. (1999). Evaluation and rehabilitation of patients with adult motor neuron disease. Archives of Physical Medicine and Rehabilitation, 80(8), 951-963. https://www.archives-pmr.org/article/S0003-9993(99)90089-8/pdf — Preceding unsigned comment added by MakeTheWorldALittleBetter (talk • contribs) 12:24, 9 October 2018 (UTC)

I'm not nominating the article for GA status

Doc James: I’ve decided not to nominate the article for GA status; I’m in medical school, and I just don’t have the time to respond to any issues that might be raised during a GAN. And while the article would benefit from a GA review, I feel comfortable leaving it in its current state; it's pretty comprehensive and uses the latest, high-quality literature reviews on ALS. I’ll still be around; I log into Wikipedia pretty much every day, and I’ll keep an eye out for vandalism, subtle or otherwise, along with any misguided attempts to add primary sources to the article. Thank you again for your help with the lead; I worded things as concisely as I could, and you found a way to say the same thing in even fewer words! AmericanLemming (talk) 23:57, 23 January 2019 (UTC)

User:AmericanLemming you have done amazing work :-) This would be well worth publishing if you need such things. A group of use published this Wikipedia article a while ago.[16] Doc James (talk · contribs · email) 00:05, 24 January 2019 (UTC)

How common

This sentence

"The disease affects about two people per 100,000 per year worldwide."

Does not fit really with

"In much of the world, rates of ALS are unknown."

Maybe the Lancet paper form 2011 is a little out of date now and epidemiology is more well know. Have removed the older paper.

Doc James (talk · contribs · email) 00:40, 11 January 2019 (UTC)

Riluzole does not have much of an effect on life expectancy. When it was introduced IMO can go in the body of the text. Doc James (talk · contribs · email) 00:54, 11 January 2019 (UTC)

Lead, GAN, and worldwide incidence

I took a look at your changes to my expansion of the lead. I think they're an improvement, because like you said, it's important to keep the lead as concise as possible to keep it accessible to the general reader. I am planning on bringing the article to GAN next Tuesday, after my next med school exam.

As far as the global epidemiology of ALS goes, the statements "the disease affects about two people per 100,000 per year worldwide" and ""In much of the world, rates of ALS are unknown" are not mutually exclusive. The 1.9 per 100,000 per year worldwide incidence figure comes from the "Global Epidemiology of Amyotrophic Lateral Sclerosis" from 2013. That average comes from 34 epidemiology studies, 24 of which are from Europe, two from the US, one from Canada, one from New Zealand, two from China, two from Japan, and one from Uruguay. You can argue that it's kind of misleading to extrapolate the worldwide incidence of ALS from mostly European studies, and to their credit the authors of the 2013 review don't claim that the 1.9 figure represents the worldwide incidence. The 2016 article "Projected Increase in ALS from 2015 to 2040" states "The worldwide annual incidence of ALS is about 1.9 per 100,000", citing the 2013 review as their source. The 2016 article is right, in that 1.9 is our best guess at this moment in time, but it's not a very good guess. Anyway, all of this nuance is too much detail for the lead, so perhaps we should just go back to "In Europe, the disease affects about two to three people per 100,000 per year" giving "The changing picture of amyotrophic lateral sclerosis: lessons from European registers" as our source. AmericanLemming (talk) 02:13, 12 January 2019 (UTC)

I am happy with either. 1.9 is about 2. If the ref says about 2 I am happy with that with the rest of the detail about how accurate or not the estimates in the body. Doc James (talk · contribs · email) 15:51, 18 January 2019 (UTC)

White people versus Caucasian

White people is easier to understand and thus I restored it in the lead. Our goal is not to use the most common medical terms but the common terms. Doc James (talk · contribs · email) 15:51, 18 January 2019 (UTC)

Yes but (1) the source uses the term "Caucasian", (2) the two terms are not necessarily interchangeable (for example, 11% of US Hispanics consider themselves white[17]), (3) "white" sounds quite awkward in Europe. Generally, I am not a fan of using such sweeping race-based generalisations in place of proper epidemiology data. — kashmīrī ^TALK 17:09, 18 January 2019 (UTC)

No strong feeling either way. Doc James (talk · contribs · email) 01:46, 25 January 2019 (UTC)

References

Caucasians, etc.

I removed the sentence "It is more common in white people than in Africans, Asians, or Hispanics" as there are several problems with it.

1. It misrepresents the original source – the 2007 meta-analysis "Ethnic variation in the incidence of ALS". doi:10.1212/01.wnl.0000258551.96893.6f. {{cite journal}}: Cite journal requires |journal= (help): The Systematic review of 61 publications demonstrates uniform occurrence of ALS across the Caucasian populations of Europe and North America. By contrast, available epidemiologic data suggest that the incidence of ALS is lower among African, Asian and Hispanic ethnicities than among Caucasians. It is difficult to draw firm conclusions, as there is methodologic heterogeneity among studies performed in non-Caucasian populations. So, no firm conclusions are drawn; yet those referring to the article seem to skip the last sentence as well as the word "suggest", unfortunately.
2. "White people", "Africans", etc., are categories so broad for epidemiology that it feels no longer scientific to use them other than in a context of a single country.
3. "Common" is imprecise as it is unclear whether it means incidence or prevalence, or both.
4. Little grape's comment (in edit summary)[18] that Caucasians' not recommended in medical writing since 2004, not least because technically it includes e.g. Asian people and North Africans [19] is incorrect in three aspects. One, the reference is not about the term "Caucasian" but "Caucasoid race". Two, it is not a "recommendation" but a simple information about change in classification headings used in MeSH. Three, the term "Caucasian" never included Asians other than those living in the Caucasus region.

The ref used for the content in question says "The worldwide annual incidence of ALS is about 1.9 per 100,000 (ref. 7), with uniform rates in Caucasian populations and lower rates in African, Asian and Hispanic populations"[20]

So content appears supported. That statement is based on a number of studies including this one[21] which was from 2013. It says "MND mortality rates were significantly lower among nonwhite versus white populations"

"Common" is close enough and covers both incidence and prevalence as both appear to be true. Have changed to "appear to be" to better match the other source. Doc James (talk · contribs · email) 01:38, 25 January 2019 (UTC)

I profoundly disagree, sorry. Re. current incidence/prevalence, the article relies entirely on a single meta-analysis by Cronin, et al (reference #8). Given that Cronin is a tertiary source, and Arthur, et al, is a secondary source, we should definitely quote the former instead of using a selective quotation of a selective quotation from Arthur. And Cronin does not support the statement – actually, reading further paragraphs on page 1005 sheds more light: The performance of adequately designed epidemiologic studies in developing countries is hindered by the lack of access to adequate medical care. Even in the United States, underascertainment of neurodegenerative diseases among ethnic minorities may account for apparent racial variation in ALS frequency. In other regions, cultural factors complicate complete case ascertainment, such as the case with cultural medicine in Hong Kong. Finally, life expectancy is generally lower outside of the developed world, and an earlier age at death from infectious or cardiovascular diseases may limit the size of the older, more susceptible [ALS] population.

For the same reason we should NOT conflate incidence and prevalence by employing a vague adjective "common".

Worth noting that Cronin says that there have been no well-conducted ALS incidence studies elsewhere in Africa apart from a single study from Benghazi, Libya, which showed a comparable ALS incidence as in Europe. So, the idea that ALS occurs less frequently in the blacks stems from very few studies that included migrant black population (predominantly the US and the Philippines). For this reason, no-one should generalise the incidence "in blacks".

To sum up, Arthur, et al, quoted selectively and incorrectly from Cronin, leaving out all the nuance and doubt. It unfortunately happens so - not all academic publications are worth the title. However, as we are able to be dilligent here, let's stick to the right sources and not to misquotes.

Finally, as there have been problem with the statement, please do not reinsert it until the problem is resolved here on the Talk. — kashmīrī ^TALK 09:06, 25 January 2019 (UTC)

Yes "rates in much of the world are unclear" and it "appears to be more common in whites". The later sentence is very tentative. Doc James (talk · contribs · email) 16:57, 25 January 2019 (UTC)

"whites"??? It's always puzzling why the Americans are so obsessed with skin colour which they call "ethnicity" these days. Sorry, but looking from Europe, Greeks have more to do - genetically, culturally etc. - with Turks (I know it's not PC!) than with, say, Norwegians. The term "Asian" is as meaningless as it gets, because Asia is inhabited by a plethora of unrelated nations and tribes, from Armenians to Mongolians, Malays, Russians, Vietnamese, Afghans, Cherkess, Iranians, Uighurs, etc. Even you will agree, hopefully, that a "South African" has little to no nothing to do genetically with an Ethiopian, except for skin colour; still in the US both will be called "blacks" and some people try to bump them together even in epidemiology studies.

I profoundly disagree with such kindergarten-level classification of a disease incidence, and Chiò's paper that you mentioned supports my view. So, let's try to come up with something along the following lines: a relatively high incidence and prevalence of ALS has been observed in the Scandinavia and in Northern Europe, with ALS becoming gradually rarer moving to the South of the continent. The data from a handful of studies in the Far East are inconclusive, as are data from the few places elsewhere in Asia. ALS incidence or prevalence rates for Africa have not been established. In the US, the disease appears to be more common in whites, based on disease registries, although under-reporting of neurological disorders in US ethnic minorities cannot be ruled out. Etc. etc. — kashmīrī ^TALK 18:44, 25 January 2019 (UTC)

Some of the sourcing uses that terminology. I have no strong feelings about it.

This ref simple says more common in "white"[22] Doc James (talk · contribs · email) 00:01, 28 January 2019 (UTC)

This is a US registry snapshot and I assume it uses the terminology employed by the registry creators, irrespective of what the article author might think. But the fact that the Americans popularly classify people by skin colour does not make it more scientific IMHO, especially when talking about ALS gene transmission. — kashmīrī ^TALK 17:00, 29 January 2019 (UTC)

Any way to prevent ALS?

Should have some way to prevent this ill... Maybe good nutrition?--186.61.223.0 (talk) 02:51, 31 May 2019 (UTC)

Wally pipp's revenge listed at Redirects for discussion

An editor has asked for a discussion to address the redirect Wally pipp's revenge. Please participate in the redirect discussion if you wish to do so. _signed, Rosguill ^talk 20:24, 5 July 2019 (UTC)

Association with intense exercise

I don't feel confident in making direct edits to this article myself, but it seems that this reference about the association with high intensity exercise (and those individuals whose DNA apparently predisposes them to engage in high intensity exercise), and the occurrence of Motor Neurone disease is sufficiently important to be worth covering in the article. See: Motor neurone disease: Intense exercise increases risk, say scientists Marshelec (talk) 08:14, 11 June 2021 (UTC)

Hello there. I looked at the research study mentioned in the BBC article. It’s “[Physical exercise is a risk factor for amyotrophic lateral sclerosis: Convergent evidence from Mendelian randomisation, transcriptomics and risk genotypes]”. It’s open access, so you can read it yourself if you’re interested. Generally on Wikipedia we prefer secondary sources (literature reviews) over primary sources (like this research study). If we were to mention this study in the ALS article, I would say something like “A 2021 Mendelian randomization study found that frequent, intense exercise was associated with an increased risk of ALS, especially in people already genetically predisposed to developing ALS, like those with C9orf72 repeat expansions. Earlier studies may not have found a link between exercise and ALS because they did not take the genetics of people with ALS into account.” AmericanLemming (talk) 17:16, 11 June 2021 (UTC)

No Cure known but recovery possible?

Mrs: Birgit Zimmermann of Zizishausen (Nürtingen), Germany recovered fully after 7 years of suffering from ALS. Initial Diagnosis was in 2015, the recovery started in April 2021. During a stationary checkup over three days, starting 28th June, they found that the nerves had regenerated, the lung capacity was very much higher and no markers for the ALS were found anymore. The University Hospital in Tübingen, Germany is trying to figure out what happened. There is _no_ official statement from the University Hospital yet. THIS IS WHY I HAVE NOT EDITED THE ARTICLE YET.

(She herself thinks there might be a link to Astrazenica which she took shortly before she started getting better. However there is no further information on that.)

Source: https://www.ntz.de/nachrichten/nuertingen/artikel/zizishausen-erstmals-als-patientin-genesen/ https://www.medizin.uni-tuebingen.de/de/das-klinikum/einrichtungen/kliniken/neurologie/ambulanzen/motoneuron

Highlander1694 (talk) 14:14, 8 November 2021 (UTC)

Probably false. Tabloid press is never a reliable source for medical information. See Identifying reliable sources (medicine). — kashmīrī ^TALK 14:44, 8 November 2021 (UTC)

Wiki Education Foundation-supported course assignment

This article is or was the subject of a Wiki Education Foundation-supported course assignment. Further details are available on the course page. Student editor(s): Sgeorge3.

Above undated message substituted from Template:Dashboard.wikiedu.org assignment by PrimeBOT (talk) 14:07, 16 January 2022 (UTC)

Relyvrio

On Sept. 29, 2022 the US FDA approved Relyvrio for ALS treatment. The drug slows median disease progression by a few months. The monthly cost for the drug in the USA was to be $14,000. https://www.wsj.com/articles/amylyxs-als-drug-is-approved-by-the-fda-11664484362 Note: a deeper dive would mention that the first independent advisory panel voted to NOT approve the drug, but subsequent to additional data, a second panel voted to approve it. Amylyx Pharmaceuticals has agreed to continue to monitor it's effectiveness and to withdraw it from the market if additional data shows it isn't effective.174.130.71.156 (talk) 06:30, 1 October 2022 (UTC)

Requested move 1 December 2022

The following is a closed discussion of a requested move. Please do not modify it. Subsequent comments should be made in a new section on the talk page. Editors desiring to contest the closing decision should consider a move review after discussing it on the closer's talk page. No further edits should be made to this discussion.

The result of the move request was: moved. There is a consensus that "ALS" better fits our WP:CRITERIA, mainly on recognizability. (closed by non-admin page mover) — Ceso femmuin mbolgaig mbung, mellohi! (投稿) 16:35, 15 December 2022 (UTC)

---

Amyotrophic lateral sclerosis → ALS – Per WP:COMMONNAME, as this disease is overwhelmingly known by its acronym similar to HIV, SARS, MERS, SIDS, etc. Rreagan007 (talk) 05:07, 1 December 2022 (UTC) — Relisting. GeoffreyT2000 (talk) 05:21, 8 December 2022 (UTC)

• oppose: per WP:MEDTITLE ~Mason (talk) 21:23, 1 December 2022 (UTC)

Medical sources also call it "ALS" more often than the full name. For example, on the CDC page about the disease, it uses the full term once and the initials over 20 times.[23] So WP:MEDTITLE also supports this move. Rreagan007 (talk) 04:05, 2 December 2022 (UTC)

See this discussion for all the same arguments against the renaming of ADHD. The same reasoning applies here. Talk:Attention deficit hyperactivity disorder#Requested move 14 October 2022 Mason (talk) 04:13, 2 December 2022 (UTC)

Then explain why all the articles I cite above are at their more common initialism. Rreagan007 (talk) 04:51, 2 December 2022 (UTC)

• Support per SARS, MERS, and especially SIDS, which have all been moved recently by the same standards, with SIDS moved in recent months. I came upon this article by a link to “motor neurone disease”, but it wasn’t until I saw ALS that I recognized what the article was referring to. As a layman, amyotrophic lateral sclerosis is meaningless to me. — HTGS (talk) 19:24, 8 December 2022 (UTC)

• Support per WP:NCACRO, which states, "In general, if readers somewhat familiar with the subject are likely to only recognise the name by its acronym, then the acronym should be used as a title." Like HTGS, I'm somewhat familiar with the subject (layperson without personal experience) and I did not recognize the full name.

  I disagree with the analogy to Attention deficit hyperactivity disorder. A layperson can be reasonably expected to know the phrase "Attention deficit hyperactivity disorder," even if they are more likely to say "ADHD." A layperson cannot be reasonably expected to know the phrase "Amyotrophic lateral sclerosis." Birdsinthewindow (talk) 02:43, 14 December 2022 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

Terminology: synonyms or not?

The lead paragraph includes the following statement:

"Amyotrophic lateral sclerosis (ALS), also known as motor neurone disease (MND) or Lou Gehrig's disease..."

This makes it sound as if the three terms are perfectly synonymous. However, as the rest of the article makes it clear, ALS is merely the most common type of motor neuron disease. In other words, all ALS patients have MND by definition, but not all MND patients have ALS. To make sure the readers understand the subtle (but real) difference between the two terms, this phrasing of the lead should be made clearer, preferably by someone who is well-versed in this field. 104.153.228.206 (talk) 01:00, 28 April 2023 (UTC)

In a medical professional context, you are perfectly correct. In popular press usage in the UK, MND is synonymous with ALS. I feel that the phrase can stand, on the basis that MND serves as a synonym to an entire country, except for certain of their medical personnel, who know better.-- Quisqualis (talk) 03:40, 29 April 2023 (UTC)

Thanks for your comment. Agree with @Quisqualis. Yes, logically, the terms should be used consistently. In practice, the field alternates between clumsily saying "ALS/MND" in an international context, or using "ALS" or "MND" in either the US or UK + Commonwealth to cover ALS, PLS, PMA, PBP, monomelic forms, sporadic ALS, genetic ALS, juvenile ALS, and a few outliers in between. For extra bonus points, a lot of ALS is actually co-existent with frontotemporal dementia and so ALS/FTD is becoming increasingly common, especially in a genetic context like the C9orf72 gene. There have even been suggestions of making further signifiers that "ALS-FTD" with a hyphen means ALS with FTD, while "ALS/FTD" means ALS or FTD...

This has been a multi-generational problem, in that ALS / MND is *both* the regionally specific umbrella term *and* the most common subtype within the umbrella. The lead was written by someone well versed in the condition (me!) and this reflects the current state of the rather jumbly field. I've even written an article on this very topic and have suggested the Motor Neurone Disease Association rename itself, although "British ALS Association" would spell BALSA which sounds a little flimsy =) The alternative article-wise could get pretty complex and we have had separate articles in the past for MNDs *as a group* which is now motor neurone diseases (plural, including, say, spinal muscular atrophy), while motor neurone disease (singular) redirects here to ALS. This seems the most workable solution for the time being. Renaming diseases is a tough undertaking, as demonstrated by systemic exertion intolerance disease and Willis-Ekbom Disease, neither of which have really made a dent in their original names of chronic fatigue syndrome or restless leg syndrome. PaulWicks (talk) 17:26, 29 April 2023 (UTC)

Note: This confusing set of conventions is addressed briefly in the "History" -> "Name" section at the end of the article. PaulWicks (talk) 21:00, 29 April 2023 (UTC)

GA comments

@PaulWicks: thanks for pinging me for interest regarding GA comments. This is a subject I am not very aware of at a detailed level, so hard for me to add too much feedback. One thing I noticed is I think it would be useful to wikilink to 2-3 famous people that have had it, and maybe include pictures on 1-2 of them. I see we mention Lou Gehrig, which makes sense. Is there anyone else worth mentioning? Stephen Hawking (ultra famous physicist) for me is the most known, and I am also aware of Hal Finney (first recipient of Bitcoin). Are there others that are very well known? I thought it might humanize the article a bit. Thanks! Jtbobwaysf (talk) 06:12, 20 July 2023 (UTC)

GA Review

The following discussion is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.

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This review is transcluded from Talk:ALS/GA2. The edit link for this section can be used to add comments to the review.

Reviewer: Argenti Aertheri (talk · contribs) 08:11, 25 August 2023 (UTC)

GA review

Last updated at 2024-01-11 17:29:04 by Lowercase sigmabot III

See what the criteria are and what they are not

1) Well-written

1a) the prose is clear, concise, and understandable to an appropriately broad audience; spelling and grammar are correct

1b) it complies with the Manual of Style guidelines for lead sections, layout, words to watch, fiction, and list incorporation

2) Verifiable with no original research

2a) it contains a list of all references (sources of information), presented in accordance with the layout style guideline

2b) reliable sources are cited inline. All content that could reasonably be challenged, except for plot summaries and that which summarizes cited content elsewhere in the article, must be cited no later than the end of the paragraph (or line if the content is not in prose)

2c) it contains no original research

2d) it contains no copyright violations or plagiarism

3) Broad in its coverage

3a) it addresses the main aspects of the topic

3b) it stays focused on the topic without going into unnecessary detail (see summary style)

4) Neutral:

4) Neutral: it represents viewpoints fairly and without editorial bias, giving due weight to each

5) Stable:

5) Stable: it does not change significantly from day to day because of an ongoing edit war or content dispute

6) Illustrated, if possible, by media such as images, video, or audio

6a) media are tagged with their copyright statuses, and valid non-free use rationales are provided for non-free content

6b) media are relevant to the topic, and have suitable captions

Overall:

Comments:

Quick review:

• "Classic ALS involves neurons in the brain and spinal cord (upper motor neurons, highlighted magenta), as well as the lower motor neurons, which go from the spinal cord to the muscles, highlighted teal." - That's not magenta, it's more of a burgundy, or just call it red.
• The copyvio alert appears to be a false positive due to backwards copying. That would have been too easy! The original version of this was pretty much a direct copy of a public domain source, I've added the appropriate citation.

Final review:

• I've done some very basic typo/grammer fixes and tagged a lot of places citations are needed. I'm sorry if the number of {{medical citation needed}} seems excessive, but medical articles have pretty high citation requirements.
• "Cognitive and behavioral issues are associated with poorer prognosis as they may reduce adherence to medical advice, as well as increased caregiver burden due to deficits in empathy and social cognition." - Whose deficits in empathy? Maybe "...medical advice, and deficits in empathy and social cognition may increase caregiver burden." or something similar?
• "More than 40 genes have been associated with familial ALS, of which four account for nearly half of cases, and around 5% of sporadic cases" - I can't work out the numbers here. Four genes account for half of all cases, from all causes, but only 5% of sporadic cases? Or half of non-sporadic cases? Considering how much more common sporadic cases are those could mean very different things.
• "About 90% of people with ALS die peacefully." - That's a judgment call and thus needs to either be a direct quote, or reworded to drop the "die peacefully" euphemism.
• The "Comparison of Kings and MiToS ALS staging systems and prognosis at each stage" table is quite difficult to follow since the two are so different, maybe split the table into two or add row-span sub-headings? I'll draft up both in my sandox.

@PaulWicks: I'm going to put this on hold until oh, how's next monday sound? Ping me if you want me to take a look before then, or need help with anything! ~ Argenti Aertheri^(Chat?) 10:56, 26 August 2023 (UTC)

Thank you for the fast and thorough review!

• Magenta -> Red (this was because of a usability guideline I read somewhere)
• Citations added throughout
• Cognition sentence tweaked
• Genetics of ALS - Changed to "More than 40 genes have been associated with ALS, of which four account for nearly half of familial cases, and around 5% of sporadic cases".
• Dying peacefully - I didn't write that bit, the reference is in French and I don't have access, so striking for now, added a little more detail on dying later on.
• Yes thanks for that good idea, implemented.

Cheers! PaulWicks (talk) 21:10, 27 August 2023 (UTC)

Wow, I did not expect you to find all those citations that quickly! I went ahead and did some quick formatting fixes, but I need one more thing clarified before it's ready for GA. "as well as a 35%+50% reduction in the putative ALS biomarker neurofilament light chain" I had read that as 35%±50%, but that doesn't actually make sense, so is it supposed to be 35%-50%? ~ Argenti Aertheri^(Chat?) 23:13, 27 August 2023 (UTC)

In an attempt to just fix this myself I checked the cited source and it doesn't mention Tofersen/Qalsody, or even just antisense oligonucleotides. I'm guessing you linked to the wrong article. ~ Argenti Aertheri^(Chat?) 09:57, 28 August 2023 (UTC)

I've been an ALS nerd for a while and the Wikipedia Library is incredibly helpful in getting full access to papers rapidly =)

Oops my bad(s) - I had thought you wanted a reference to confirm that NFL was a putative biomarker of neuronal damage. I don't *think* I wrote the 35-50% piece, the trial itself published in the NEJM (now cited properly) looked at different subgroups like fast progressors and reported out the between-group differences for treated and placebo groups. Because of the complexity I've taken out a specific % as it would be too hard to explain in brief here. PaulWicks (talk) 17:44, 28 August 2023 (UTC)

Looks good, congrats! ~ Argenti Aertheri^(Chat?) 22:12, 28 August 2023 (UTC)

The discussion above is closed. Please do not modify it. Subsequent comments should be made on the appropriate discussion page. No further edits should be made to this discussion.