Talk:Progressive bulbar palsy

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) 04:16, 13 April 2008 (UTC)

Hi WhatamIdoing, I would like to clarify the above. It is too strong to say that such links are not permitted - the page cited above is a guideline (a strong one, admittedly), and not policy, and so an editor may add such links so long as there is a good reason to include it. In this case, I agree that the forum link is unneeded. --Zippy (talk) 08:31, 25 April 2008 (UTC)

Some of the most basic information in the article is contradictory

In the section on epidemiology it says that "PBP is both progressive and slow, with symptoms lasting around 10 to 20 years until it reaches a fatal ending". In the section on symptoms it says that "Death, which is often from pneumonia, usually occurs 1 to 3 years after the start of the disorder." Which is true? As far as I can tell from some rapid research, the latter is true of this disease, not the former. But this is not an area in which I have any expertise. Help anyone? Invertzoo (talk) 14:35, 12 June 2008 (UTC)

PBP, now more commonly known as bulbar onset ALS has a prognosis that ranges from 1-3 years. This form of motor neuron disease is more aggressive than limb onset ALS (3-5 years). Savisha 10:54, 25 October 2009 (UTC) —Preceding unsigned comment added by Savisha (talk • contribs)

I agree that this form of the disorder has a poor prognosis (because of early impairment of swallowing and consequent aspiration compounded by reduced vital capacity). The reference cited in favor of a slow course is from 1900. That statement should be moved to the history section or deleted. I am not sure, however, whether there might be forms of this disorder that never spread beyond the brainstem, which may, indeed, have slower progression. Presto54 (talk) 23:20, 23 October 2011 (UTC)

External Link to MedMerits

I have identified this article as appropriate for placement of an external link to MedMerits. If you have no objections please place the link or give me the go-ahead to do so. See here for COI disclosure and brief justification. Presto54 (talk) 23:20, 23 October 2011 (UTC)

Presto, I would object to that and would revert according to WP:EL. Sorry, --PaulWicks (talk) 01:18, 24 October 2011 (UTC)

Please state the specific provision in WP:EL that is the basis for your objection. Presto54 (talk) 15:26, 24 October 2011 (UTC)

Well, on reading the ALS article you have there (which is a good introductory overview and written by respected clinicians), all I see about PBP is the following: "Progressive bulbar palsy. Bulbar palsy (selective dysfunction in lower cranial nerves) is the presenting symptom in about 20% of all patients with amyotrophic lateral sclerosis. It is most commonly seen and has the worst prognosis in menopausal women. Typically, the condition spreads first to the lower cervical-thoracic area and then to the lumbosacral area (Brooks et al 1991). Rarely, the disease is confined to the bulbar region--a true progressive bulbar palsy."

I don't want to overargue my case, because the intent of using this approach to dealing with COI is to have an editor without that COI make an independent judgment on the merits of the case and the relevant WP policies, guidelines, and practices. So I'll just point out some facts--the way I see them. You can mull it over. I'd be happy to answer any questions. Otherwise I'm done with it. First of all, I like the idea of breaking out this variant of ALS as an independent article. However, the WP article on ALS also mentions PBP. That's why I added ALS to a new See also section. Nevertheless, the information on PBP in ALS is still sketchy. PBP itself is characterized as a stub. MedMerits doesn't break out PBP and just discusses it in ALS. Information relevant to PBP is scattered throughout the ALS article and, indeed, many of the considerations apply to both ALS and its PBP variant. But the level of detail relevant to PBP in the MedMerits ALS article far exceeds that in the ALS and PBP articles in WP combined, IMHO. Also, look at the current ELs in PBP. Can you honestly say that they approach the MedMerits article in quality and depth? Presto54 (talk) 05:42, 26 October 2011 (UTC)

WP:EL states you should avoid linking to "Any site that does not provide a unique resource beyond what the article would contain if it became a featured article." This article is already longer and provides more details (for instance, history), than the MedMerits article, therefore I don't think it is worth adding it. Out of interest, I noticed you wrote in the discussion: "I am a medical advisor to MedMerits, a one and a half year old company, whose business model is to bring high-quality, restricted medical content into the public arena and make it freely available." - By my lights, taking restricted content and putting it in the public arena isn't a business model. It's a business activity, sure, but what is the business model i.e. how do you make revenue? Cheers, --PaulWicks (talk) 16:29, 25 October 2011 (UTC)

I'm aware of WP:EL and accept the provisions of your quote. I understand why you concluded that the MedMerits ALS is sparse on PBP information, but you have to look through the whole article and also consider the WP ALS article to make a fair comparison. With regard to the business model for MedMerits, it thinks it can give away premium quality information, thereby attract a high-quality, educated audience which would attract commercial support. The payback for commercial support would be generated through advertising and opt-in promotional activities. I read the WP article PatientsLikeMe and find it intriguing that it figured out a way to get commercial support without hosting advertising or the like. Presto54 (talk) 05:42, 26 October 2011 (UTC)

Like I say, I think it's a good ALS article (though perhaps not as broad as the main WP ALS article). Equally I like (and frequently refer to OrphaNet's writeup on ALS (http://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=EN&Expert=803)) which is better (in some respects) than both WP and MedMerits. However, WP doesn't exist to be a comprehensive list of all useful resources so far as I understand it. I think you may also be detecting some anticipation by editors who would predict that although MedMerits is currently ad-free, that it will introduce ads or become a pay-site to support itself. That may be unfair, but of course many editors wear scars of similar debates in the past. I was reading on the site (http://www.medmerits.com/index.php?partners/) that it might be a little more like Sermo or Doctors.net.uk than a purely informational site. If the intention is to raise awareness of the site you might consider starting an article about it as I can't see one at the moment. More broadly, I see very little mention of MedMerits on Google (other than much of the debate you've been engaged in on WP) and I would (humbly) suggest engaging a dedicated PR resource to explore other channels than WP to increase visibility.--PaulWicks (talk) 19:11, 26 October 2011 (UTC)

Thanks for dwelling into this at such great length. Just a couple of brief comments on new issues you brought up. I think you're right about the reflexively negative attitude towards MedMerits for the reasons you stated. MedMerits does hope to attract more commercial support, and some or all of that is likely to be in the form of advertising, which in itself is no sin. (Every major medical and scientific journal is largely ad supported.) Nobody can predict the future. Nobody seems to have a problem with eMedicine. MedMerits will succeed or fail based on its ability to carve out a niche for itself, most likely along the lines expressed in its mission statement. I can't start or edit an article on MedMerits as that would violate WP:COI. Incidentally, the link to MedMerits you provided should no longer be live. It predates launch of the public pages. The program it discusses is for clinicians who choose to opt in and is now known as the MedMerits Clinicians Program. All the previous WP discussion, including the one we were having, concern the publicly available MedMerits pages. They are intended for patients, etc, and are also there for clinicians who do not want to opt in to the Clinicians Program. The page does not apply to them and should not be accessible. I'm curious how you got to it. Presto54 (talk) 05:12, 27 October 2011 (UTC)