Talk:ALS/Archive 2

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Archive 1

Archive 2

Archive 3

Moved: Link to Lyme disease

The following paragraph was added on 6 January by new editor Flaviench. The figures from 1990 were later amended by Kashmiri. It does not appear to meet the standards of WP:MEDRS. The books by Vaughter did not appear in the bibliographic databases I checked and may be self-published, and the 1990 study by itself does not seem adequate, and is also very old. I have moved it here for discussion.-gadfium 20:31, 6 January 2013 (UTC)

(QUOTE)

There is evidence that ALS could be caused by an infection of the central nervous system by spirochetes, in particular Borrelia Burgdorferi, the bacteria responsible for Lyme disease.^[1] A paper published in 1990 by Halperin, et al. showed that 47% (9 of 19) of unselected ALS patients had evidence of past exposure to the bacteria, whereas prevalence in the control group was 11%.^[2] There is also anecdotal evidence of ALS patients improving when taking antibiotics, pointing towards a bacterial origin.^[3]

[1]
Vaughter, Sarah (2011). When ALS is Lyme (PDF). ISBN 978-0-578-09736-7.
[2]
Halperin, J. J.; Kaplan, G. P.; Brazinsky, S.; Tsai, T. F.; Cheng, T.; Ironside, A.; Wu, P.; Delfiner, J.; Golightly, M.; Brown, R. H.; Dattwyler, R. J.; Luft, B. J. (1990). "Immunologic reactivity against Borrelia burgdorferi in patients with motor neuron disease". Archives of neurology. 47 (5): 586–594. doi:10.1001/archneur.1990.00530050110021. PMID 2334308.
[3]
Vaughter, Sarah. "Antibiotics often work against ALS". Retrieved 6 January 2013.

(UNQUOTE)

Why are you saying the Halperin paper is not adequate? It is a peer-reviewed study, published in the Archives of Neurology, Volume 47, it seems to me it fits the standards of WP:MEDRS. As for being too old, this is the most recent published work I could find regarding this subject. The first reference to the Vaughter book is not absolutely required, as it only builds on top of the Halperin paper, so the reference could be removed, but the Halperin paper contains the important result. Flaviench (talk) 22:28, 6 January 2013 (UTC)

If you have access to the scientific databases, you can readily find lists of papers which cite the Halperin paper. For example, I was able to quickly find "Alsuntangled, G. (2012). "ALS Untangled No. 17: "When ALS is Lyme"". Amyotrophic Lateral Sclerosis. 13 (5): 487–491. doi:10.3109/17482968.2012.717796. PMID 22873562.", one of a series of papers exploring whether there is a link between ALS and Lyme and not finding one, and also saying that patients with ALS are not cured by the Lyme treatments. This paper in the series is a review of “When ALS Is Lyme”, and concludes that it is filled with errors and omissions and fails to establish any connection.-gadfium 22:55, 6 January 2013 (UTC)

Yes, I've read both of these papers, but that paper from ALSUntangled is fallacious at best, and does not provide any scientific evidence to refute the link between ALS and Lyme. And I won't even mention the conflict of interest (ALSUntangled prevents ALS cure by disinfo for profit?). They even advise against Lyme testing for ALS patients! Why would they say that when the ALS diagnosis is a diagnosis of exclusion? Again I am fine removing the reference to the "When ALS Is Lyme" document if you don't feel good about it, but the findings of the Halperin paper have never been refuted. 47% of ALS patients tested positive for Lyme, when according to CDC in the US in 1990, only 0.086% should have been testing positive. You have to admit this is a serious discrepancy. And just have a look at ALS forums, the number of patients misdiagnosed with ALS when they had in fact Lyme is disturbingly high, even though the test for Lyme disease gives a very high rate of false negatives (this was the case of my grand-father, he had to take the test several times before neurologists admitted he had Lyme). I just think people deserve to know about it. Flaviench (talk) 06:52, 7 January 2013 (UTC)

I apologise. I misunderstood you as saying that the Halperin paper was the most recently published work on the subject you could find. The ALSuntangled paper has the advantage over Vaughter as being from a reliable source; it is not surprising that Vaughter is upset at the criticism of her self-published work. As Vaughter's ideas are clearly not accepted by the mainstream, it is not appropriate for the article to include them.-gadfium 07:40, 7 January 2013 (UTC)

Worst disease ever- Jon's Vote 2006 — Preceding unsigned comment added by 108.3.172.68 (talk) 21:02, 10 February 2013 (UTC)

Hi, I have read the Halperin paper. In a high Lyme area (long Island) with a background lyme antibodies rate of 10.5% in the population, Halperin found 9 of 19 randomly selected ALS patients had Lyme antibodies. This is roughly equivalent to throwing a (10 sided!) dice 19 times and getting 9 sixes in the 19 throws! The chances of 9 positives showing up by random chance are 1 in 21,159 which is pretty remote. My conclusion would be that Lyme sometimes causes a disease with ALS like symptoms. That is 21158/21159 certain or 99.995% certain. (Which is good enough for me). You really need to put this in the ALS article. Because Lyme has various treatments. Also, you could mention that Stephen Hawking's father studied and experimented with Borellia in East Africa in the 1940's. It is a pretty interesting fact! Gaiatechnician (talk) 04:09, 30 September 2014 (UTC)

there is lots of internet chatter about this, but the current scientific consensus is that "There is no convincing evidence that ALS can be caused by Lyme disease." - please see http://www.alsuntangled.com/pdf/ALSU1.pdf The Halperin paper is WP:PRIMARY and should not be used as a source per WP:MEDRS.Jytdog (talk) 12:23, 30 September 2014 (UTC)

RNA Transcription problem

Proposed merge

ubiquilin-2

need correction in epidemiology section

Speech language pathology related to food?

History section

Ice Bucket Challenge

baseball players and ALS

"One of the famous victims of this disease is Stephen Hawking."

Lancet 2011

Sections needed: ALS in the media, Famous patients

motor neurone disease

Why does this article include the British spelling "motor neurone disease"? According to WP:ARTCON:

While Wikipedia does not favor any national variety of English, within a given article the conventions of one particular variety should be followed consistently.

This article is in American English. The American English spelling is "motor neuron disease". In fact, even The Lancet refers to "motor neuron." So I'm not even sure that "neurone" is modern British spelling. It may be an obsolete or archaic term.

Unless someone can give a reason, we should change it. --Nbauman (talk) 13:42, 28 August 2014 (UTC)

Seems only fair given that the article refers to how many 'Americans' are affected by the disease. Phrackage 10:11, 29 August 2014 UTC)

Seems that 'motor neurone' is used to refer to 'motor neurone disease' in order to distinguish it (being the most common) from the other motor neuron diseases. Don't think it would be in order to try to change it. Iztwoz (talk) 16:31, 28 August 2014 (UTC)

I would like a WP:RS to prove that "motor neurone disease" is ever used in American English, and that it's not British English. And it would have been more courteous if Carlos Rojas77 had discussed it in Talk first before reverting it. --Nbauman (talk) 21:33, 30 August 2014 (UTC)

Confused at the issue here. Motor neurone disease is commonly used specifically to refer to ALS in the British Commonwealth (an article from this week from someone who has it http://www.bbc.co.uk/programmes/p025ny8q )...Joost Van Der Westhuizen (South African Rugby player) also recently gave a talk on how he is coping with MND. The issue brought up here by a user appears to be the content should be solely American? Wikipedia is a global encyclopedia and it's content is used to reflect that. Have no idea who Lou Gehrig is but obviously folk in the US do hence it has correctly appeared as a variant of the term for the disease in the article just as MND has.--Carlos Rojas77 (talk) 07:29, 31 August 2014 (UTC)

The Lancet, which is the most authoritative source of British spelling and usage of medical terms that I know of, refers to it as "Amyotrophic lateral sclerosis" http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2810%2961156-7/fulltext They only use "motor neurone disease" in their searches, when they want to make sure they don't miss anything, and in the names of organizations. When they want to refer to what we in the U.S. call "Amyotrophic lateral sclerosis", they also call it "Amyotrophic lateral sclerosis".

Same with The BMJ, which is the second most authoritative source of British medical usage. They also use "Amyotrophic lateral sclerosis" to refer to what we in the U.S. call "Amyotrophic lateral sclerosis". When they say "motor neurone disease," they use that term to refer to the broader range of diseases that includes "Amyotrophic lateral sclerosis".

They don't use "Amyotrophic lateral sclerosis" and "motor neurone disease" synonymously. They use "motor neurone disease" to refer to what we in the U.S. call "motor neuron disease". For example:

Clinical Review: Diagnosis and management of motor neurone disease BMJ 2008;336:658

The classic form of the disease is also referred to as amyotrophic lateral sclerosis and presents with a mixture of upper and lower motor neurone features, such as wasted fasciculating biceps with a brisk or easily obtained biceps deep tendon reflex. The rarer variants of the disease can have a pure upper motor neurone presentation, primary lateral sclerosis, or a pure lower motor neurone presentation, progressive muscular atrophy.

(In fact, the BMJ sometimes uses the spelling "motor neuron disease" too. http://www.bmj.com/content/347/bmj.f7274)

The BBC story describes a patient diagnosed with MND. That's right. He was diagnosed with MND. He wasn't diagnosed with ALS. There's nothing in the article to indicate that he was diagnosed with ALS specifically, or that he has ALS, just with MND. (For that matter, the BBC refers to "Lou Gehrig" regularly, as do the UK medical journals.)

I am not saying that the content should be solely American. I read Lancet, BMJ, and Nature every week, and I've written for UK journals, so I have to know the difference. What I am saying is that we should follow WP:ARTCON as cited above. The entry is in American English and we should follow American English.

So the introduction, which says, "Amyotrophic lateral sclerosis (ALS)—also referred to as motor neurone disease (MND)", is wrong, in American English or UK English. UK doctors don't use ALS and MND synonymously, as I've shown for The Lancet and The BMJ. You haven't given me a WP:MEDRS to show otherwise. --Nbauman (talk) 07:48, 2 September 2014 (UTC)

maladie de Charcot

New source for epidemiology

Disease vs Disorder

AlexAltois (talk · contribs) has several times attempted to change the Commonwealth name for ALS from "motor neurone disease" to "motor neurone disorder", on the grounds that ALS is a disorder not a disease.

Whether they are correct on it being a disorder rather than a disease I'll leave to the medical experts to decide. However, the name "motor neurone disease" is much more widely used than "motor neurone disorder", and we report what actual usage is, not what we think it should be.-gadfium 22:47, 29 August 2014 (UTC)

AlexAltois (talk · contribs) Merely because a common name is implied, does not mean that it has to be utilized. Accuracy is required and this is fact a disorder. Not a disease. https://en.wikipedia.org/wiki/Disease#Terminology In medicine, such misnomers are only allowed for those disorders that were initially named "syndromes" before the underlying pathology was analysed (when it was only understood as an accumulation of symptoms), for example the Guillain–Barré syndrome is in fact a disorder, but by name called a syndrome merely because that is the initial terminology given. However, ALS is not named as such, by definition it is a disorder, rather than a disease. I redirect to this link yet again: "Reference request (disorder not disease): http://www.merriam-webster.com/medical/disease http://www.merriam-webster.com/medical/disorder Note initial link. inclusion of "..specific infected agents." Medically, ALS is a disorder. Disorders are such that the underlying pathology is known, however, the malfunction itself does not possess an infectious agent. Many who edit here do not seem to be very keen on terminology. I take it very few are actual medical practitioners? I shall add an edit one last time, after that, it is up to the extremely keen editors to decide. The term disease is very misleading. Would you call dystonia or dysautonomia a disease? No, the terms are very misleading. Do change where required. AlexAltois (talk) 02:06, 30 August 2014 (UTC)

Unless you can provide evidence that "motor neurone disorder" is more commonly used, then we should continue to use "motor neurone disease". To do otherwise is original research. I notice that you have not changed "Lou Gehrig's disease" or "Charcot disease", yet your argument applies just as much to those terms.

You have changed the statement to say "In the British Commonwealth, the term "Motor neurone disorder" (MND) often refers to ALS alone." - but this is an incorrect statement, because in the Commonwealth, the term in use is "Motor neurone disease".-gadfium 02:47, 30 August 2014 (UTC)

AlexAltois (talk · contribs)::The commonly used terms have been edited. This was why I did not change the initial terms, very much the same reason why the aforementioned disorder is referred to as a syndrome. However, the description has not been altered in any way as of now, apart from referring to it as a disorder. I apologize for the previous edit to it's common name. I have made the change where necessary and have left the originally given names untouched. The single edit made indicates that it is, by terminology a disorder, but commonly known as a disease. I hope this has been made clear in the text. Thank you. AlexAltois (talk) 08:01, 30 August 2014 (UTC)

@AlexAltois: You seem not to have read the websters entry that you linked. It clearly includes genetics and environmental factors within its definition of disease. That said, the real problem seems to be the implicit confusion between the set of all the distinct MNDs and the specific one known as ALS. That confusion is the best reason to avoid using the general term to refer to the specific condition. LeadSongDog come howl! 20:02, 31 August 2014 (UTC)

Hi gang, 12 year veteran ALS/MND researcher here, I've lived and worked in both the US and UK in this field. It's always "motor neuron(e) disease" never "disorder". Splitting hairs here is unlikely to be useful or appropriate for WP IMHO --PaulWicks (talk) 14:41, 2 September 2014 (UTC)

The ICD uses disease therefore so do we Doc James (talk · contribs · email) (if I write on your page reply on mine) 14:45, 2 September 2014 (UTC)

@PaulWicks, @LeadSongDog I understand that common usage is given importance, this is why its common names as mentioned have not been edited or altered. However, wouldn't it be inaccurate to to term it a disease by categorization? I am sorry if I came across as wrong, I merely wished to make the article as accurate as possible considering that that is the goal of Wikipedia. Moreover, I do realize that the ICD terms it as such, but please note that ICD does not seem to distinguish terms. Consider: http://www.icd10data.com/ICD10CM/Codes/G00-G99/G20-G26/G24- (dystonia) http://www.icd10data.com/ICD10CM/Codes/E00-E89/E70-E88/E85- (not related but it throws around the terms without any clear boundary) Hence, said argument cannot be applied. Terminology cannot be violated. Yet again, I merely split hairs in order to make the article as accurate as possible to true medicine. Splitting hairs is a necessity when it comes to neurology, a field I well and truly love.AlexAltois (talk) 16:44, 2 September 2014 (UTC)

I might be missing something here, but I don't think the split of "disease=known external pathogen" vs. "disorder=unknown cause" is really hard and fast in medicine. Even if it were, we have differing theories about ALS being environmentally triggered (e.g. BMAA neurotoxin) as well as genetically inherited in some (e.g. SOD1 carriers). In a public health context I'd call ALS a non-infectious disease, similar to cancer or dementia. I'm struggling to fully understand the point you're trying to make here, can you spell it out more explicitly without me having to look at different definitions and compare them? There are plenty of things I'd concede, such as that referring just to "ALS" or even "MND" is an over-simplification as there are rare subtypes like PMA or PLS or even monomelic lateral sclerosis. I'd also propose that suggesting it only affects either just the spine or the motor neurons is false too as there are cognitive effects for some, hence the renaming of the field journal in 2009 from "ALS and other motor neuron disorders" to "ALS and frontotemporal degeneration". All of that stuff is true but also too in-depth and probably obscure for the article. But if you're willing to take another run at stating your case I'd be happy to consider it and share it with colleagues for feedback. Best wishes, --PaulWicks (talk) 09:22, 3 September 2014 (UTC)

ICD10-CM G12.2 (motor neuron disease) includes 12.20 (Motor neuron disease, unspecified), 12.21 (Amyotrophic lateral sclerosis), 12.22 (Progressive bulbar palsy), and 12.29 (Other motor neuron disease). We don't need to invent terminology, or split hairs. We can say that "amyotrophic lateral sclerosis is one type of motor neuron disease (spelled neurone in British English)". LeadSongDog come howl! 03:06, 4 September 2014 (UTC)

Is motor neuron disease the British term for ALS

Do not think so. It is simply one type of motor neuron disease as mentioned. Fascinating. One of the refs added here does not support the content in question "Pattern of motor neurone disease in eastern India" which finds that ALS is 44% of MND cases.

The NHS just got it wrong Doc James (talk · contribs · email) (if I write on your page reply on mine) 07:37, 4 September 2014 (UTC)

The key is the spelling. Motor Neurone (with the e) is used to refer to ALS (one of the five Motor Neuron disorders). I'm from NZ and now live in Australia and have only ever known it as Motor Neurone disease. --Jorpani (talk) 09:04, 4 September 2014 (UTC)

The extra e is just the British spelling of neuron. We have an interesting ref here "Many doctors use the terms motor neuron disease and ALS interchangeably" So it is not just the UK

But many doctors / patients use terms incorrectly. Doc James (talk · contribs · email) (if I write on your page reply on mine) 08:11, 4 September 2014 (UTC)

This textbook is interesting. The singular is still ALS and similar conditions.Doc James (talk · contribs · email) (if I write on your page reply on mine) 08:18, 4 September 2014 (UTC)

How is this "The term motor neurone disease (MND) is sometimes used interchangeably with ALS,[1] while others use it to refers to a group of similar conditions that include ALS.[2]" Doc James (talk · contribs · email) (if I write on your page reply on mine) 08:24, 4 September 2014 (UTC)

Concur with your wording, just substituted sometimes for often as the condition is regularly referred to as Motor neurone disease in the nations that know it as such. Also used a BE source for Neurone spelling.Carlos Rojas77 (talk) 08:06, 11 September 2014 (UTC)

Source does not say `often` is the issue. How neuron is spelled is not really important Doc James (talk · contribs · email) (if I write on your page reply on mine) 09:47, 11 September 2014 (UTC)

Average?

Pathophysiology Section

Often

Old primary sources

There are efforts to add old primary sources here

IMO this is against WP:NOR and WP:MEDRS. The sources do not say they are the first description, the secondary source does. Doc James (talk · contribs · email) (if I write on your page reply on mine) 03:22, 18 October 2014 (UTC)

There is a reasonable secondary source (2001, but that is okay for historical stuff). The 2 19th century papers are what is often called "convenience links" to the original papers, imo a good thing in general. Assuming the book refers to them, there is no issue with WP:NOR. Perhaps putting them in a note is best. Johnbod (talk) 13:58, 18 October 2014 (UTC)

the editor edit-warring over that, left a long note on my Talk page here. has a very clear agenda to replace secondary sources with primary sources everywhere in WP. oy. Jytdog (talk) 15:05, 18 October 2014 (UTC)

We've discussed this question several times before. IMO historical sources are ideal candidates for a ==Further reading== section. However, a solid majority of experienced medical editors disagree with me. They prefer to list them as footnotes in the ==History== section. As for whether the original says that it's the first, (a) first-time descriptions often say they are the first description, usually by saying something like, "To the best our knowledge, this has not been described in the literature before now" and (b) the requirement is that the fact be verifiable, not necessarily that it be verified or cited right now. And MEDRS doesn't really apply anyway, because a question of "first" is a question of human history, not a question of biomedicine. WhatamIdoing (talk) 15:37, 18 October 2014 (UTC)

In the edit shown at top here he is not replacing the secondary ref (not good, I agree), but supplementing it. I am ok with that (somewhere on the page). Johnbod (talk) 16:09, 18 October 2014 (UTC)

I am okay with these being used to support secondary sources in the history section and should have really just moved them there. Adding these to the lead is WP:UNDUE wight IMO. Doc James (talk · contribs · email) (if I write on your page reply on mine) 04:29, 19 October 2014 (UTC)