Talk:ALS

Copyright violation

Some text in this article was originally taken from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm (public domain)

My apologies, I went to this site which had a "Copyright c 2002 HealthNewsFlash All rights reserved" tag. --DocJohnny 05:36, 3 January 2006 (UTC)

Which copied the same text as we (half of their pages are from NINDS). --WS 12:46, 3 January 2006 (UTC)

hehe, which I discovered much to my chagrin, after I slapped a copyrightvio on the page --DocJohnny 18:11, 3 January 2006 (UTC)

Added it as a reference to the article. --WS 19:33, 3 January 2006 (UTC)

Found problem on this page, but when I went to "edit this page" the text looks normal. In the first paragraph, when reading the article (not in edit view) I see "...that control voluntary muscle movement. this disease is a genocide so you need to cut off all relation to the outside world and family. IT WILL KILL YOU. YOU WILL NOT SURVIVE! The disorder causes muscle..." Can someone remove the trollish bits? 70.231.124.107 01:22, 22 January 2007 (UTC) mona

Adding links

I added a bunch of links. More are needed - i am not a doctor. I only linked those words which seemed most "scientific" to me.--Amir E. Aharoni 09:14, 8 January 2006 (UTC)

Paul Apisa

Who's Paul Apisa and why's he under the "famous people" section?—The preceding unsigned comment was added by 129.63.143.58 (talk • contribs) .

Got one google hit [1]--John^DO|^{Speak your mind} 04:26, 27 January 2006 (UTC)

Dude. Seriously. Cut it out. "Famous".--86.136.70.62 16:40, 18 February 2006 (UTC)

Howdy folks

Hello all, I was just wondering if you were aware of the page motor neuron disease? I've just done quite a big edit over there to try and bring it up to date. Personally I think there shouldn't have to be two seperate articles. In the US, I understand ALS can mean the group of other diseases including ALS, PMA, PLS, and PBP as well as just meaning plain old ALS by itself. We use the term MND in the UK in the same way. If you'd be interested in discussing ways we could integrate please discuss here, on my talk page, or on the MND page.

Thanks --PaulWicks 23:02, 1 February 2006 (UTC)

I believe there is enough unique information on this page for this article to stand alone. Not all MSDs progress the same and have the same symptoms etc. -Ravedave 05:28, 4 February 2006 (UTC)

I don't think they should be merged, ALS is part of the group of motor neuron diseases. The terminology often used in the US and UK is confusing and inaccurate. --WS 12:21, 4 February 2006 (UTC)

OK then, I take your points. How would you feel about putting more links between the two then. E.g. bits that could go in MND that are here and are not unique to ALS? For example the SOD1 stuff. Or convesely things that are covered in more detail in the MND article could be linked to from bits of the ALS article that are more sparse, e.g. the extra-motor change part, which renders this statement untrue: "Because ALS affects only motor neurons, the disease does not impair a person's mind, personality, intelligence, or memory" --PaulWicks 11:24, 5 February 2006 (UTC) articles could definitlyuse

Fine with me, be bold. The articles definitly need some work. A description of how the US/world seperate the diseases would probably be an excellent addition. -Ravedave 22:23, 5 February 2006 (UTC)

seriously peeps i mean it —Preceding unsigned comment added by 24.58.195.170 (talk) 23:21, 4 October 2007 (UTC)

Picture for article

I thought the article needed a picture so I added one of Lou. If anyone has a better pic feel free to add it... -Ravedave 02:16, 23 February 2006 (UTC)

One More Person

Added Zeca Afonso to the list. I feel sorry for you guys!!! love ya'll!

merge

I don't know why this article was created. It only leads to confusion. ALS is a term predominantly used in the USA whilst MND is used elsewhere. Most forms of MND are ALS and so it is a synonym in the USA. Havng this page detracts from the MND page. This page has "notable suffers of ALS" with Stephen Hawking listed and yet as I understand it because of his longevity most neoroligists believe that he has a different form of MND. [2]. As for the other people listed on this page who knows. Jooler 11:00, 25 February 2006 (UTC) - Note this article was 2 January 2006 created from a redirect to MND. Jooler 11:05, 25 February 2006 (UTC)

Jooler whilst I agree with some of your points I doubt our american readers would see it that way, and in fact they might even suggest we ditch MND and switch to ALS as they have the most patients and researchers! Unless you want to put it to a vote of some kind? --PaulWicks 16:15, 25 February 2006 (UTC)

<edit conflicted> - Having a page at ALS and one at MND will only mean that US readers will read and edit the ALS page and British and Commonwealth readers will read and edit the MND page and information will be duplicated. It is a situation that was only created in January of this year and it should be restored to the state it was in before then. It is wrong to list patients on this page that have other forms of MND other than ALS, just because ALS is the term used in the US and this is inevitable what is going to happen as US readers come to this page and ignore the MND page. Basically it will only cause confusion to everyone concerned. MND is all encompasing. The best and simplest solution is to restore the situation as it was before January. Jooler 19:17, 25 February 2006 (UTC)

See conversation above. ALS is a type of MND, and there is ovbiously enough material here for its own article. -Ravedave 19:10, 25 February 2006 (UTC)

ALS is a type of MND from the perspective of most people in the US this is simply not the case. In their eyes ALS and MND are synonymous. To have an article here as well as there is just too confusing. Jooler 19:17, 25 February 2006 (UTC)

I think it should stay but you might want to try and edit it so that it is clear that ALS is the type of MND which differentialyl affects the upper and lower motor neurones. But yes Jooler I agree that there will become a split between editors from each side of the Atlantic. TBH I only have time to work on MND not ALS as well as it is, as you say, duplicative and not worth my time justifying my edits to two sets of editors. I'm not convinced by merge, nor delete, but I'd prefere a BOLD edit to make it clearer. The worst that can happen is someone can revert some of them, why not give it a go?--PaulWicks 14:40, 27 February 2006 (UTC)

Because the articles have been fixed to clarify what is MND and what is ALS and becasue of this link I have removed the merge tag. -Ravedave 04:59, 23 March 2006 (UTC)

I see this article continue to drift off course on a few points. For instance, the stuff about ALS not affecting the mind is untrue. For instance, see Ringholz et al (2005)(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16116120&query_hl=1&itool=pubmed_docsum). However I will continue to work on the MND article only as I don't have time to edit both. I've been working recently on an international website for people with this illness and I have been experimenting with the term "ALS/MND". This is what is used at the international symposium and also the ALS/MND Alliance. What would people think of merging the articles into ALS/MND and having a one-stop shop for all your needs? --PaulWicks 21:14, 29 May 2006 (UTC)

What Source

"In 90 to 95 % of all ALS cases, the disease occurs apparently at random with no clearly associated risk factors. Patients do not have a family history of the disease, and their family members are not considered to be at increased risk for developing ALS.

About 5 to 10 % of all ALS cases are inherited..."

Where is this from?

Fairly common knowledge amongst professionals, but if you want one try: Hand CK, Rouleau GA. Familial amyotrophic lateral sclerosis. Muscle Nerve 2002;25:135-59.--PaulWicks 14:37, 27 February 2006 (UTC)

Dr. Brooks

Why is there no metion of Dr. Benjamin Brooks, the UW scientist who discovered Tamoxifen's powers against Als and has discovered equally important drugs that combat ALS?

There's not much mention of individual scientists; for example you might say Bob Brown or Bud Rowland are equally important people in ALS. See labile affect for brief precis of Neurodex.--PaulWicks 09:26, 7 March 2006 (UTC)

Stephen Hawking

I don't believe Stephen Hawking was ever diagnosed with ALS. He has some form of motor neurone disease, but I've never heard it described as ALS. In fact, he's lived with his condition for 40 years, which would make an ALS diagnosis extremely unlikely. vpoko 18:39 05 Apr 2006

From Hawkings website "I am quite often asked: How do you feel about having ALS? " -Ravedave 22:09, 5 April 2006 (UTC)

From the MND talk page: Stephen Hawking says in his introduction to "A Brief History of Time" that he has ALS. If he was being non-specific about his dx, as he is British, he would have said he has MND. Therefore he has ALS, albeit the most slowly progressive occurrence known. Cheers --PaulWicks 21:59, 1 February 2006 (UTC)--PaulWicks 08:55, 6 April 2006 (UTC)

He's British but his audience is American. Jooler 09:20, 12 April 2006 (UTC)

Not in the British print of the book. Please sign your comments. --PaulWicks 13:16, 12 April 2006 (UTC)

I think you will find that the original publication is American and uses American spellings and phraseology and this is not changed for the British reprint. Jooler

Stephen Hawking is the person with the longest recorded history of ALS. However he is severely disabled and in a continuing state of deterioration, albeit a slow one. ALS is a heterogeneous disease; sometimes it lasts upwards of 10 years, the quickest I ever heard of was only a couple of months. There are extremes at both end, and Prof Hawking is the greatest extreme of longevity. The fact that he is famous makes him stand out more but I always ask people how many other astrophysicists they can name. Usually none. Prof Hawking is obviously very gifted but he is also regularly endorsed as the most intelligent person on the planet; this is quite unlikely. I think part of the interest in Prof Hawking is that there is a seductive notion of a brilliant mind trapped in a failing body. It is a theme that often appears in science fiction and is a manifestation of mind/body dualism. If someone wishes to claim that Prof Hawking does not have ALS, please provide some suggestions for what he does have, and cite the evidence they have to suggest such a thing. The original issue was this: Vpoko stated that Prof Hawking had never stated he has ALS as opposed to MND. Myself and Ravedave have provided evidence that he has in fact stated he has ALS. The alternatives are that he is lying (why?) or that you know more than the neurologists that have examined him. --PaulWicks 09:08, 15 April 2006 (UTC)

Stephen Hawking has never permitted a neurologist to examine him since he was 21 years old. He has gone on record stating this. The fact that he is an extraordinarily gifted theoretical physicist is not a sufficient qualification to render neurologic diagnoses. Because of the time course and the lack of dementia, more likely than ALS in his case is Hereditary spastic paraplegia; I have heard it suggested that one reason he might wish to conceal an HSP diagnosis behind a false diagnosis of ALS is to prevent genetic discrimination against his children. HSP is genetic, of course; ALS is a sporadic illness.

The tragedy here, of course, is that the story of Stephen Hawking gives false hope to every patient newly diagnosed with ALS. None can expect to live even a tenth as long as Hawking has. 75.15.121.220 (talk) 21:20, 23 June 2008 (UTC)

My copy says: A brief history of time, originally published in Great Britain by Bantam Press 1988. Page ix says "Apart from being unlucky enough to get ALS, or motor neurone disease, I have been fortunate in almost every other respect". So far I have seen a "recognized" instead of the more British "recognised" but this is not a hard and fast rule. "Behaviour" is spelt with a u, as is "colour". So I am not entirely convinced by Jooler's suggestion.--PaulWicks 09:21, 15 April 2006 (UTC)

Ahh well I don't have the book, so had no way of checking but anyway

• From http://brain.hastypastry.net/forums/showthread.php?t=10847
  • I have discussed Steven Hawking’s case with some Neurologists. Most expressed the opinion he probably does not have ALS but PMA, which is another way of stating he probably has only lower motor neuron disease and not upper motor neuron disease. I also understand he refuses to be tested for upper motor neuron disease. One neurologist told me Hawking refused to let the neurologist test his reflexes for upper motor neuron disease. If Steven Hawking is a PMA case, it would explain why he has progressed so slowly. PMA is often very slow and is often not considered life threatening.
  • My neurologist several years also volunteered to me that he didn't think that Hawking has ALS. He told me what he thought he had and it may well have been PMA. It was before ALS was on my radar screen and prior to my own diagnosis.
  • I think your right he probably does not have ALS but in the Uk we only have one catagory when describing this condition for the majority of the time and that is MND, for the punters anyway.
  • Harry and John's neurologists share the view of ours: it is highly unlikely that Steven Hawking has ALS. Unfortunately most people immediately associate Steven Hawking --- and his longevity -- with ALS because they are not as educated as the average neurologist.
• etc..

Jooler

I thought everyone in the world had a copy just nobody had finished it?! =)

There have been other conversations like this one including on BT and a website I run at www.build-uk.net. First off you could try emailing Prof Hawking's assistants and perhaps asking them to help edit the wikipedia article on him. You could ask about the sorts of things that are listed in the BT thread but I imagine he gets asked that a lot. PMA is a slowly progressive form of MND but it is still fatal sadly. The only form that might qualify as non-fatal is primary lateral sclerosis. However the thing with the subtypes is that pathologically there is a great deal of overlap, so when we say PLS or PMA we might really mean LMN- or UMN-predominant rather than "exclusive". Something I've put together on this can be found here: http://wiki.iop.kcl.ac.uk/default.aspx/Neurodegeneration/Classification%20of%20Motor%20Neurone%20Diseases.html

The other thing to consider is that Prof Hawking is on a vent, specifically a trache. Most pwMND are not offered this in the UK for various reasons. --PaulWicks 08:41, 17 April 2006 (UTC)

I belive this whole discussion started because I added a Lou Gehrig picture someone else uploaded, which apparently was a copy-vio, so the next best person I could think of was Mr. Hawking, who's picture I added. If anyone can find a good image of Gehrig we can use, I belive it would be much better. If Hawking does have ALS is is an outlier, so Gehrig would be a better pic.-Ravedave 01:01, 29 April 2006 (UTC)

I think this line of thought occurs frequently in people discussing MND or ALS so I don't think it's attributable entirely to your picture. Also, as Hawking is by far the most recognised person with MND and the only well-known person currently alive with it I think his photo should stay. Perhaps Gehrig's photo in addition would be an improvement though.--PaulWicks 11:55, 30 April 2006 (UTC)

What brought you here?

I just want to hear people stories. My Mother-in-law has ALS and I have been involved with the minnesota ALSA, once I became a wikipedia editor I thought I would try and help improve this page. -Ravedave

Did my PhD in MND on cognitive, emotional, and behavioural changes within sporadic and familial ALS as well as PMA. Also did some brain scanning stuff, tiny bit of epidemiology, and some work on depression. Also I run www.build-uk.net --PaulWicks 15:19, 28 April 2006 (UTC)

I've been researching ALS for several years after learning of my family history. My grandfather died of ALS, as did his mother. My uncle (7th person in the family to be diagnosed) and mother have both been diagnosed. Based on my mom's diagnosis and genetic testing, I have a 50% chance of having the defect - That's a very strong motivating factor to find out more information. -STG0459 24 October, 2006

Mao Zedong

The article on Mao Zedong indicates that it is uncertain what, specifically, he had. Both Parkinson's disease and motor neurone disease are mentioned as possibilities. Thus I'm removing him from the list since it isn't clear that he belongs here. -- Zawersh 23:06, 30 April 2006 (UTC)

Consider adding Jed Bartlett. I added Pro Hart. - Richardcavell 06:39, 16 May 2006 (UTC)

Sure Jed Bartlett is a fictional character and had MS? --PaulWicks 07:34, 16 May 2006 (UTC)

"Famous" People with ALS

I don't mean to be offensive, but is it just me, or as time goes on are the people being added as "famous" getting considerably less famous? Is there any kind of guidance on how well-known someone should be? I would have said that Richard Olney the neurologist who is an ALS expert and now has it himself is significantly more famous than a sports coach or musician. However to many outside the field he is probably not considered famous at all! --PaulWicks 12:42, 23 May 2006 (UTC)

Bump! Anyone else got views on this? --PaulWicks 09:28, 28 June 2006 (UTC)

I've been googling people who are on the list so far and they've generally been people who can be classified as famous insofar as they achieved national or international recognition in a particular field; such as Viola Tunnard who has a biography on Amazon, or Roy Walford who was in the Biosphere 2 project. My view at present is not to include people who only are famous within a local region or a particularly narrow field, such as someone well known in a single US state. Reason being that if you extend it out far enough this list will become a fairly all-enveloping one; after all ALS is rare but it's not that rare! I'm still flying blind on this one though and would appreciate some input from other editors, even if it's only a "me too" or a "I disagree". Finally, it'd be great if people adding names to this list would consider registering usernames. Cheers, --PaulWicks 23:35, 1 July 2006 (UTC)

Agree, as an easy work around perhaps we could set a minimum google result limit. -Ravedave 23:56, 1 July 2006 (UTC)

I just kind of feel that "notable" people, makes it seem like all the others don't matter.

Is there anyone famous from outside the US with this disease?

Please sign your comments. Stephen Hawking is outside the US, as was Jimmy Johnstone and David Niven. However these latter two are probably less widely known internationally. --PaulWicks 22:34, 29 July 2006 (UTC)

A couple more people have been removed from the list after recent updates. As a general pointer, if the person does not have a wikipedia article written about them, or it is impossible to find any evidence on Google that they exist, or if they can not really be considered as well known outside of a relatively small sphere of influence, they are unlikely to remain on the list. This is not meant to cause offence to people by suggesting their friends or relatives are not "notable people", but Wikipedia is an encyclopedia and to list everyone affected by a disease with ~80,000 patients worldwide would soon become unmanageable. There is an ALS/MND patient registry available online at PatientsLikeMe which has more than 350 names from around the world and will act as a permanent monument to the hundreds of great people who have been afflicted by this terrible illness. Thanks, --PaulWicks 08:27, 16 September 2006 (UTC)

I have removed all redlinked articles. If these people are both notable and have ALS, then there should be articles (WITH references) that testify to that. No article, then no source. --Calton | Talk 05:45, 11 October 2006 (UTC)

I agree with that and think that a "list of famous people with ALS" article should be started. Then people can add whoever they want and the article doesn't get filled with cruft. -Ravedave ^{(help name my baby)} 05:57, 11 October 2006 (UTC)´

I think the alternative, that has worked in at least one case in the past, is to write to the editor that added that person and ask them to write that article themselves. More content, no? I will write the page for Jenifer Estess--PaulWicks 10:43, 11 October 2006 (UTC)

Jon Stone is credited as the creator of Sesame Street, however the Sesame Street article credits Jim Henson as the creator. Jon Stone's bio page only credits him as a writer and director for Sesame Street.

Just a reminder that there is an ALS/MND patient registry available online at PatientsLikeMe which has more than 500 names from around the world and will act as a permanent monument to the hundreds of great people who have been afflicted by this terrible illness. Please do NOT add people to the "notable patients" list unless they already have a wikipedia article about them. Thanks. --PaulWicks 17:39, 7 March 2007 (UTC)

whence the name? "Amyotrophic lateral sclerosis"

I actually had a business partner who died of ALS many years ago. But for the life of me, I don't understand what the name means. Can someone add an explanation of it to the introductory paragraph? Kaimiddleton 21:57, 17 September 2006 (UTC)

Want to avoid a copyvio but this is a good summary: A-myo-trophic comes from the Greek language. "A" means no or negative. "Myo" refers to muscle, and "Trophic" means nourishment---"No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates it leads to scarring or hardening ("sclerosis") in the region. from http://www.alsa.org/als/what.cfm

Personally I don't think this should be in the lead paragraph but if other authors agree it should be in there somewhere then by all means put it in! --PaulWicks 17:28, 20 September 2006 (UTC)

I tryied to un-copy-vio it a bit and added it. I think it is a great addition. -Ravedave ^{(help name my baby)} 04:36, 25 October 2006 (UTC)

Moving refs

I took a bunch of websites that were in the references section and put them into external links because they didn't seem to be serving as citations for specific statements, and because with the footnote style referencing the numbers started over with them and it was confusing (because a statement in the text will have the citation 3, e.g., and there are two 3's in the refs). Of course, if my edit was wrong, you can undo it. But i'd suggest rather than that making everything consistent by putting them all into the footnote format with this template: <ref name=" ">{{cite web | url= | title= | author= | date= | publisher= | accessdate=2006-10-20 }}</ref>. But you can only do that if you have specific sentences for them to reference. Thanks! Peace, delldot | talk 06:47, 2 December 2006 (UTC)

Plagiarism!!!

Hey! I'm currently writing a 5-page essay about ALS and spent a lot of time on the page http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm before coming on here to see what was written. What I realised was that LARGE parts of this page is just in fact copied off the page I listed above. But no source has been listed!!! Isn't this just plain old plagiarism??? I mean... in the very least the source should be listed.... glad to hear thoughts from you others on this....! Gilraen690 11:43, 13 January 2007 (UTC)Gilraen690

Hi there Gilraen, thanks for your question. If you look at the top of this discussion page you should see the following text which has been there for quite some time:

Some text in this article was originally taken from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_amyotrophiclateralsclerosis.htm (public domain)

Thankyou for your concern. --PaulWicks 13:40, 13 January 2007 (UTC)

Oh, sorry!!! Gilraen690 18:26, 13 January 2007 (UTC)Gilraen690

Etiology/Pathogenesis section

I made revisions to the etiology section (formerly known as "Aetiology" and "Causes"). I changed the first two paragraphs to reflect the current scientific opinion that free radical damage does not likely play a major role in pathogenesis. This is based on a number of studies which showed that both active (dismutase-active; retains antioxidant capacity) and inactive forms of mutant SOD1 can cause ALS-like disease in murine models of the disease. Additionally, when tg SOD1 mutant mice also expressed wild-type SOD1 (which functions in a normal antioxidant manner, to the best of current knowledge), no change in disease course was found (even in the case of over-expression). I also adjusted the second paragraph to omit the use of "amyloid-like" as a phrase to describe protein aggregates, as amyloid accumulations are generally considered to be extracellular. Also, I added information about current theories on SOD1 mutant aggregates in disease pathogenesis. JHUbme24 07:09, 24 January 2007 (UTC)JHUbme24

Thankyou, that section needed the attention of a good labrat =) --PaulWicks 10:48, 24 January 2007 (UTC)

Citations needed re ALS Association

I've flagged where I reckon we need citations re the ALS Association and it disregarding its donors wishes. It reads like these are the words of one of its digruntled donors, and I doubt there is a reputable source that could be quoted on this. Georgethe23rd 14:07, 3 June 2007 (UTC)

Lancet review

There is a review in the latest Lancet that could be useful here: Mitchell JD, Borasio GD (2007). "Amyotrophic lateral sclerosis". Lancet. 369 (9578): 2031–41. doi:10.1016/S0140-6736(07)60944-1. PMID 17574095.

PMID 17671248 - this weeks NEJM study on genetic predisposition for sporadic ALS. Fifty genes are candidates, but FLJ10986 stands out. JFW | T@lk 20:27, 2 August 2007 (UTC)

Good job, everyone

I am passing through, assessing pages for WPMED. This one looks good enough to get a GA rating. Keep up the good work. --Una Smith 02:43, 13 July 2007 (UTC)

Guamanian

Have never heard the variant on Guam referred to as an own grupp of ALS, and I have been researcher in this field for years.

Beside the familial forms, you often seperate the bulbar onset ALS from limb onset, because bulbar onset progress more rapid. Further it would perhaps be worth mention ALS with front temporal dementia (FTD) as this is a form that got a lot of attention lately.

A number of areas in the world have increased prevalence of ALS. Guam is not unique. There are Kii in Japan, french west-indies and north Scandinavia. The ALS on Guam have some special features but that has no relevance for people with ALS in the rest of US. —Preceding unsigned comment added by 24.131.239.129 (talk) 06:30, 24 October 2007 (UTC)

I would agree that a better term for this cluster might be something like "Western Pacific ALS". Guamian ALS is not a diagnostic category as such, and in fact it would make more sense to refer to lytico-bodig. It is still worth mentioning as it is the foundation for some theories as to the causes of ALS. Also please don't consider Wikipedia to be relevant only to US readers!--PaulWicks 16:32, 24 October 2007 (UTC)

External links

Wikipedia's external links policy and the specific guidelines for medicine-related articles do not permit the inclusion of external links to non-encyclopedic material, particularly including: patient support groups, personal experience/survivor stories, internet chat boards, e-mail discussion groups, recruiters for clinical trials, healthcare providers, fundraisers, or similar pages.

Wikipedia is an encyclopedia, not an advertising opportunity or a support group for patients or their families. Please do not re-insert links that do not conform to the standard rules.

External links are not required in Wikipedia articles. They are permitted in limited numbers and in accordance with the policies linked above. If you want to include one or more external links in this article, please link directly to a webpage that provides detailed, encyclopedic information about the disease. Thanks, WhatamIdoing (talk) 04:24, 13 April 2008 (UTC)

I've just purged a bunch more links. C'mon, folks: Wikipedia is not a support group, a web directory, or a patient resources listing. It's an encyclopedia: a collection of academic-style information. WhatamIdoing (talk) 17:23, 14 June 2008 (UTC)

Well, I've got to say, policy, rules, whatever, I think some of these edits could have been done with a little more sensitivity. Remember a lot of noobs will be adding friends and relatives (some deceased) to the "notable people" section and it's best to try and be a little delicate. Some of the edit summaries are also inaccurate, for instance "Muscular Dystrophy" is an umbrella term that refers to a number of neurodegenerative wasting conditions including ALS, so the MDA Europe link was not totally irrelevant. Again, I know this is not the place to argue (I have no interest in arguing about Wikipedia policy) but it seems ridiculous to me that useful links are purged from the number 1 google hit for "ALS" whilst there are a few dozen frankly irrelevant internal wikilinks in the "pathology of the nervous system" template at the bottom of the page. Now of course I can understand having to be careful about links to commercial sites (I've zapped a few myself) but the ALS community requires all the help and increased cross-fertilization that it can get. In this specific instance I think Wikipedia's policies are ultimately detrimental to its users. --PaulWicks (talk) 18:49, 16 June 2008 (UTC)

Incidentally this debate has been commented upon here: http://www.thehealthcareblog.com/the_health_care_blog/2008/04/wikipedia-time.html --PaulWicks (talk) 18:50, 16 June 2008 (UTC)

I understand your point of view, but articles are not written for the convenience of any single audience, and specifically not for patients (and their loved ones) or for medical students (the two primary problems that medicine-related articles have in their tone). I believe that patients and their families are both smart enough and motivated enough to click on more than one link at Google, so Wikipedia's long-standing decision not to be a web directory is unlikely to have any practical harm for the people you worry about.

As for MDA-Europe: The only time ALS is mentioned on that page is in a Google AdSense advertisement. That's hardly a recommendation for promoting that page as being useful to anyone who is reading about ALS, much less ALS patients and their families. However, in general, if you think I have removed a link under WP:ELNO that actually qualifies under WP:EL, then please restore it and explain your reasoning here on the talk page. WhatamIdoing (talk) 17:31, 24 June 2008 (UTC)

Stefano Borgonovo

Hi, He is not dead. He just announced the world he has ALS —Preceding unsigned comment added by 213.156.48.97 (talk) 15:28, 24 September 2008 (UTC)

Stefano Borgonovo and Piergiorgio Corno are not dead. —Preceding unsigned comment added by 79.7.153.129 (talk) 20:13, 8 October 2008 (UTC)

Mistake in the article

{{editsemiprotected}} You have put Stefano Borgonovo in the people who have died from this disease, while he's still alive. Thanks

DrScarecrows (talk) 13:58, 9 October 2008 (UTC)

 Done, he wasn't mentioned in the cited source for that section anyway, and his Wikipedia article seems to agree with you. Thanks for the correction. ~ mazca ^t|c 17:12, 9 October 2008 (UTC)

In fact, I've removed that entire sentence from the list. While I can't really read the source, not speaking Italian, it's clear that at least some of those people are not dead, so they don't belong in the 'dead people' section. I'll leave it for someone more familiar with the topic to replace the correct information, but from a BLP point of view it's probably safer to remove it while it's ambiguous. ~ mazca ^t|c 17:23, 9 October 2008 (UTC)