Talk:Amyotrophic lateral sclerosis

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Former good article nominee Amyotrophic lateral sclerosis was a Natural sciences good articles nominee, but did not meet the good article criteria at the time. There are suggestions below for improving the article. Once these issues have been addressed, the article can be renominated. Editors may also seek a reassessment of the decision if they believe there was a mistake.
November 28, 2012 Good article nominee Not listed
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ice bucket challenge[edit]

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 (talkcontribs) 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[edit]

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[edit]

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

PMAA and ALS pathophysiology[edit]

For considerations by the writers of this page:

ALS PBAA and Fish consumption:

http://nutritionfacts.org/video/als-lou-gehrigs-disease-fishing-for-answers/?utm_source=rss&utm_medium=rss&utm_campaign=als-lou-gehrigs-disease-fishing-for-answers&utm_source=NutritionFacts.org&utm_campaign=0a03d4f20b-RSS_VIDEO_WEEKLY&utm_medium=email&utm_term=0_40f9e497d1-0a03d4f20b-22091077

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[edit]

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[1].

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[edit]

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[edit]

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 (talkcontribs) 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[edit]

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[edit]

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[edit]

People with ALS may have difficulty in generating voluntary fast movements of the eye.[1] The speed of eye movement is slower in people with ALS.[1] Problems in generating smooth pursuit and convergence movements have also been noted.[1] Testing the vestibulo-ocular reflex should help in identifying these problems.[2] 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.[2] 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.[3] EOMs have significantly more myogenic precursor cells than limb skeletal muscles.[3]

Skeletal motor units[edit]

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.[4]

  • 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.[5] EOMs affected by ALS preserve the GL and OL organization.[5] 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.[5] 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.[6] People with ALS showed preserved Lnα4 expression in EOM NMJs, but this expression was non-existent in limb muscle NMJs from the same people.[6] 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.[7] Passive transfer of sera from people with sALS increases spontaneous transmitter release in spinal, but not EOM terminals;[7] 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.[5] 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.[5] These EOMs also showed an increase in connective tissue and areas of fatty replacement in compensation of fiber loss and atrophy.[5] Ophthalmoplegia, a loss of neurons in and around the ocular motor nuclei, has been noted in ALS patients.[1] 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.[5] 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.[5] Because EOMs are normally highly innervated, any denervation is compensated for by neighbouring axons which preserve function.[5]

Lactate and cinnamate[edit]

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.[8]

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.[8] In contrast, replacing glucose with exogenous lactate increases fatiguability of EDL muscles but not EOMs.[8] Fatiguability in EOMs was only found when a combination of exogenous lactacte plus cinnamate replaced glucose.[8]

NFL[edit]

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[edit]

In 2012 the NIOSH reported that NFL players had a four times greater risk of dying from ALS or Alzheimer’s disease. [9][10]

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

References

  1. ^ a b c d Cohen B, Caroscio J. Eye movements in amyotrophic lateral sclerosis. J Neural Transm Suppl. 1983;19:305-15
  2. ^ a b Palmowski A, Jost WH, Prudlo J, Osterhage J, Käsmann B, Schimrigk K, Ruprecht KW (1995). "Eye movement in amyotrophic lateral sclerosis: a longitudinal study". Ger J Ophthalmol. 4 (6): 355–62. PMID 8751101. 
  3. ^ a b Kallestad KM, Hebert SL, McDonald AA, Daniel ML, Cu SR, McLoon LK (2011). "Sparing of extraocular muscle in aging and muscular dystrophies: a myogenic precursor cell hypothesis". Exp. Cell Res. 317 (6): 873–85. doi:10.1016/j.yexcr.2011.01.018. PMC 3072110Freely accessible. PMID 21277300. 
  4. ^ Kandel ER, Schwartz JH, Jessell TM. Principles of Neural Science. McGraw-Hill; 2000
  5. ^ a b c d e f g h i Ahmadi M, Liu JX, Brännström T, Andersen PM, Stål P, Pedrosa-Domellöf F (2010). "Human extraocular muscles in ALS". Invest Ophthalmol Vis Sci. 51 (7): 3494–501. doi:10.1167/iovs.09-5030. 
  6. ^ a b Liu JX, Brännström T, Andersen PM, Pedrosa-Domellöf F. Different Impact of ALS on Laminin Isoforms in Human Extraocular Muscles Versus Limb Muscles. Invest Ophthalmol Vis Sci. 2011
  7. ^ a b Mosier DR, Siklós L, Appel SH. Resistance of extraocular motoneuron terminals to effects of amyotrophic lateral sclerosis sera. Neruology. 2000;54(1):252-5
  8. ^ a b c d Andrade FH, McMullen CA (2006). "Lactate is a metabolic substrate that sustains extraocular muscle function". Pflugers Arch. 452 (1): 102–8. doi:10.1007/s00424-005-0010-0. PMID 16328456. 
  9. ^ "Professional Football Players Have Higher ALS And Alzheimer's Death Risks.". Medical News Today. 2012-09-06. Retrieved 2016-03-27. 
  10. ^ "Pro Football Players Have 4-Times Greater Risk of ALS and Alzheimer's". Breaking Muscle. Retrieved 2016-03-27. 
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[edit]

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[edit]

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[edit]

"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[edit]

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"??[edit]

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[edit]

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[edit]

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.[1] Death in the majority of cases is peaceful, following lengthening periods of sleepiness, gradually resulting in a coma.[2] 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.[3]

References

  1. ^ 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. 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)
  2. ^ 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' ")
  3. ^ Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616. 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); 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.
— 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[edit]

──────────────────────────────────────────────────────────────────────────────────────────────────── 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)
  • Yes check.svg 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[edit]

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[edit]

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[edit]

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[edit]

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 (talkcontribs) 15:56, 2 December 2016 (UTC)

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

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[edit]

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".

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

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

Pathophysiology[edit]

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.[1] SOD1 and TDP-43 mutations may play a role in causing mitochondria dysfunction.[2]

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.[3] 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.[4]

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.[5]

References

  1. ^ Muyderman, H; Chen, T (8 December 2016). "Mitochondrial dysfunction in amyotrophic lateral sclerosis – a valid pharmacological target?". British Journal of Pharmacology. 171 (8): 2191–2205. doi:10.1111/bph.12476. ISSN 0007-1188. PMC 3976630Freely accessible. PMID 24148000. 
  2. ^ Turner, Martin R.; Bowser, Robert; Bruijn, Lucie; Dupuis, Luc; Ludolph, Albert; Mcgrath, Michael; Manfredi, Giovanni; Maragakis, Nicholas; Miller, Robert G.; Pullman, Seth L.; Rutkove, Seward B.; Shaw, Pamela J.; Shefner, Jeremy; Fischbeck, Kenneth H. (8 December 2016). "Mechanisms, models and biomarkers in amyotrophic lateral sclerosis". Amyotrophic lateral sclerosis & frontotemporal degeneration. 14 (1): 19–32. doi:10.3109/21678421.2013.778554. ISSN 2167-8421. PMC 4284067Freely accessible. PMID 23678877. 
  3. ^ D’Amico, Emanuele; Factor-Litvak, Pam; Santella, Regina M.; Mitsumoto, Hiroshi (18 January 2017). "Clinical Perspective of Oxidative Stress in Sporadic ALS". Free radical biology & medicine. 65. doi:10.1016/j.freeradbiomed.2013.06.029. ISSN 0891-5849. 
  4. ^ Talbot, Kevin (18 January 2017). "Amyotrophic lateral sclerosis: cell vulnerability or system vulnerability?". Journal of Anatomy. 224 (1): 45–51. doi:10.1111/joa.12107. ISSN 0021-8782. 
  5. ^ Gascon, Eduardo; Gao, Fen-Biao (1 January 2014). "The Emerging Roles of MicroRNAs in the Pathogenesis of Frontotemporal Dementia–Amyotrophic Lateral Sclerosis (FTD-ALS) Spectrum Disorders". Journal of neurogenetics. 28 (0): 30–40. doi:10.3109/01677063.2013.876021. ISSN 0167-7063.