Wikipedia talk:WikiProject Medicine/Archive 142

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Archive 135

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Archive 140

Deletion proposal

I'm a Wikipedian contributor mainly of the italian language version and by chance I saw the page in italian about a venous malformation that an italian professor call CCSVI and he's trying to demonstrate a correlation with neurological chronic disease. Around those theories in the past ten years there was a mediatic and sociological phenomenon that consist in pressure by patients associations on the research to push to make studies and trials about those theories. Already from the beginning and more after many years of research, there is evidence that all those theories are not valid and the only relevant thinghs is the mediatic and sociological phenomenous of people's influence on research. Some papers found on Pubmed say:

'"Waiting for Science to Catch up with Practice": an examination of 10-year YouTube trends in discussions of chronic cerebral spinal venous insufficiency treatment for multiple sclerosis' (2019)
'Medical Tourism for CCSVI Procedures in People with Multiple Sclerosis: An Observational Study' (2016)
'Caught in a no-win situation: discussions about CCSVI between persons with multiple sclerosis and their neurologists - a qualitative study' (2017)
'Resilience, trust, and civic engagement in the post-CCSVI era' (2018)
'ABOUT PATIENTS, "INVENTORS", JOURNALISTS, SCIENTISTS AND IRBs (TO SAY NOTHING OF THE INSTITUTIONS): CCSVI AND MS' (2014)

In the italian version I've proposed the deletion of the article and now the discussion is in progress, I want to know what you think about deleting the page also in the English language version. Thank you.––LuigiPetrella (talk) 07:58, 21 September 2020 (UTC)

thank you for posting at the english version also--Ozzie10aaaa (talk) 10:32, 22 September 2020 (UTC)

Hi Ozzie10aaaa what's your opinion about deleting that page? Is there anyone else that want to say something? Thank you. --LuigiPetrella (talk) 11:35, 22 September 2020 (UTC)

The article topic, Chronic cerebrospinal venous insufficiency, looks notable to me (i.e. plenty of articles and sources about it), so I doubt that deletion is an option. The obvious fear is that the article becomes a promotional piece for a speculative medical condition and treatment. The only real protection against that is to insist on the best quality sourcing and to remove any biomedical claims not sourced to the best quality secondary sources as required by WP:MEDRS. I'd be tempted to take an axe to several of the sections, but it may be best to first mark up the defective content with {{medrs}} and only remove the content after giving a chance for other editors to discuss on the talk page. --RexxS (talk) 20:35, 22 September 2020 (UTC)

I don't think we can delete the page. We can and should clean it up. This isn't the first, or even the most extreme, instance of Science by press conference that Wikipedia has encountered. WhatamIdoing (talk) 21:22, 22 September 2020 (UTC)

Thanks for the answers. If we analyze the sources (in literature), yes there are a lot, but most of those are critics and concerns, and the studies to support the associations with neurological conditions are made mainly by one single author and haven't produced any evidence accepted in medicine. Also about the pathological entity, this 'CCSVI' isn't an independent definition but just a variant of a venous insufficiency (like there are other many variants and subclassifications of physiological and pathological entities) and about that, for example, the italian ministry of health already said since 2011 that CCSVI is not a nosological entity. Moreover the article doesn't have incoming links and it is not update, that's why I've proposed the deletion. In summary this CCSVI in medicine is not an independent entity and is not associated with any pathology; on wikipedia is not linked by other articles and not updated. --LuigiPetrella (talk) 05:04, 23 September 2020 (UTC)

Unfortunately, not being an independent entity, not being associated with a pathology, not being updated, and having no incoming links are not reasons for deletion on Wikipedia. Being a variant of a broader condition can be a reason to merge the content into that article, but I fear that the volume of sources/content would overwhelm chronic venous insufficiency with one small part of the topic. One option would be to propose renaming the article to "Chronic cerebrospinal venous insufficiency controversy" or something similar and use the sources describing the criticisms and concerns as the building blocks for the article. --RexxS (talk) 18:14, 23 September 2020 (UTC)

Hi RexxS. Yes, the proposal to rename and not delete makes sense because the relevant literature is mainly about concerns and sociological analysis of the phenomenon, much more than the medical discussion. Deletion was just the easiest way, but also for the italian version I've proposed, in alternative to deletion, renaming and update the article (for now seems to be the consensus for deleting in italian, then maybe we will rewrite it under the name concern). I wait for some more reply of who may agree with this proposal. In addition to renaming, it's needed also an update of the article, maybe with the help of the sociology and media project. ––LuigiPetrella (talk) 06:31, 24 September 2020 (UTC)

I've started a Wikipedia:Requested moves at Talk:Chronic cerebrospinal venous insufficiency#Requested move 25 September 2020. All editors with any opinions are welcome to share their views in that section. WhatamIdoing (talk) 17:46, 25 September 2020 (UTC)

Phakomatosis template

I propose to add Legius syndrome to the Phakomatosis template.--Wuerzele (talk) 18:23, 25 September 2020 (UTC)

Wuerzele, it seems appropriate to me, but can you add something to the article (perhaps in a Classification section per MEMDOS), with a source indicating that reliable sources classify Legius syndrome as a Phakomatosis. That way we've got a verifiable link in the article. -- Colin°^Talk 18:36, 25 September 2020 (UTC)

Thanks,Colin done. See : Rosser, Tena (February 2018). "Neurocutaneous Disorders". Continuum (Minneapolis, Minn.). 24 (1, Child Neurology): 96–129. doi:10.1212/CON.0000000000000562. ISSN 1538-6899. PMID 29432239.

now edit the template ?--Wuerzele (talk) 19:50, 25 September 2020 (UTC)

Yes, if you now how to sub-classify it too! -- Colin°^Talk 20:45, 25 September 2020 (UTC)

Post-viral dysautonomia

Post-viral dysautonomia seems to be a thing with COVID long-haulers. Should we make a separate article (COVID-specific or any virus?), or put it in Dysautonomia? WhatamIdoing (talk) 04:39, 30 September 2020 (UTC)

I am not aware of any good data on this. Symptoms broadly associated with autonomic dysfunction are not uncommon in chronic fatigue syndrome and I think it makes more sense to put this stuff under Coronavirus_disease_2019#Longer-term_effects or under a dedicated "long COVID" article when this is inevitably forked. JFW | T@lk 13:23, 30 September 2020 (UTC)

Article title for combination drugs

The title of the article Olanzapine/fluoxetine was renamed today to Fluoxetine/olanzapine with the edit summary Vdedes98 moved page Olanzapine/fluoxetine to Fluoxetine/olanzapine over redirect: Renamed page in order to correct spelling and grammar of the article title. followed by an edit that changed the ordering within the article.

The guidelines in WP:PHARMMOS suggest using the order used by the manufacturer of the innovator brand. The order used in Symbyax is olanzapine and fluoxetine hydrochloride.

What is the appropriate title of the article? --Whywhenwhohow (talk) 18:46, 30 September 2020 (UTC)

I like the WP:PHARMMOS suggestion of using the manufacturer's order. I've left a message at the moving user's talk page explaining the situation and asking them to comment here. Perhaps there's some reason for the move that's not obvious to me? Ajpolino (talk) 19:32, 30 September 2020 (UTC)

Keep in mind that combination drugs are given "co-" names in some countries (especially the UK) which are different too. I think the use of the INN, or if there is none, the name used by the first approved commercially manufactured combination product is a good compromise - it is neutral in that it doesn't prefer one country's naming scheme over another, while still providing for a clear name in all instances. -bɜ:ʳkənhɪmez (User/say hi!) 23:51, 30 September 2020 (UTC)

Just a note, the original mover moved the page back and apologized for the inconvenience. Ajpolino (talk) 01:38, 1 October 2020 (UTC)

Rarediseases.org -- National Organization for Rare Disorders (NORD)

Thoughts? Flyer22 Frozen (talk) 00:02, 13 September 2020 (UTC) ‎

There's links at the bottom of the article to its references - which at first glance at least a couple look like they'd be solid MEDRS's - let's encourage that imo. -bɜ:ʳkənhɪmez (User/say hi!) 00:05, 13 September 2020 (UTC)

Don’t think I don’t see you mentioning me. CycoMa (talk) 02:39, 13 September 2020 (UTC)

CycoMa, of course you see this. Flyer pinged you so that you would see this discussion.

Flyer, NORD and Eurodis are the two most important organizations for rare diseases in the world. You can use information from either of those websites to support basic, non-controversial descriptive information about rare diseases. I suggest treating them like you'd treathttps://medlineplus.gov. They're not the single best or "fanciest" source in the world, but they're good enough for most purposes. In particular, I'd have no qualms about citing them for whether something's rare disease (correctly identifying that is core to their work) and whether it's genetic (vs acquired). WhatamIdoing (talk) 03:07, 13 September 2020 (UTC)

I wouldn't use either NORD or the source mentioned in the section immediately below this for material like "signs and symptoms" or "causes." And we can see what these sources were used for in the True hermaphroditism article. Flyer22 Frozen (talk) 15:59, 13 September 2020 (UTC)

I think this is one of those cases in which, if you want an "ideal" source, then you need to swap in a better source instead of blanking content. For example, PMID 25105460 also mentions that 500 cases have been reported. The point of MEDRS is to get the sentences right, not to have fancy citations that 99.7% of readers don't look at. WhatamIdoing (talk) 16:53, 13 September 2020 (UTC)

Not wanting some low-quality source for "signs and symptoms" and "causes" information is not about wanting a fancy citation. I have used WebMD and MedlinePlus sources in articles in the past, and I'm not strongly opposed to using such sources (for basic facts). As you may remember from the WP:MEDRS talk page, I've pointed to Wikipedia:Identifying reliable sources (medicine)#Other sources in support of using WebMD. But I'm not going to use MedlinePlus and WebMD for "signs and symptoms" and "causes" information, especially given that I'm more experienced at editing medical articles (and in general) than I was a few years ago. You mentioned "non-controversial." I don't consider "signs and symptoms" and "causes" (especially "causes") information non-controversial. And either way, whether NORD can be reasonably compared to MedlinePlus and WebMD, we should not be settling for such sources for information like that. We also shouldn't be encouraging newbies or other relatively inexperienced editors to state "Hey, I'm adding this source. And if you want it gone, then add a better one." We should be encouraging newbies or other relatively inexperienced editors to do better. Pointing them to the part of WP:ONUS that states "The onus to achieve consensus for inclusion is on those seeking to include disputed content." and asking them on the article talk page (or here) to look for better sources with respect to WP:MEDRS is a start. If they can't find them, then maybe the lower-quality source(s) should remain in the meantime. The point of MEDRS is not simply to get the sentences right. WP:MEDRS doesn't even focus on getting sentences right. And it's not like we go by WP:Truth. One point of WP:MEDRS, made clear right in its ~~lead~~ second paragraph (and then throughout), is to use quality sourcing. Not unnecessarily settling for lower-quality sources is one way I improved as an editor. Flyer22 Frozen (talk) 18:02, 13 September 2020 (UTC)

I don't agree that it's a "low-quality source".

I also don't agree that ONUS is meant to apply to situations in which the source is "reliable" but not "ideal", and you want "ideal".

Wikipedia has a very strong consensus that there should be information about symptoms, causes, and epidemiology in articles about medical conditions. If someone's doing his best to get that information in the article, and your only complaint is about what's between the ref tags, then I encourage you to swap in a citation that you find more satisfactory.

Now if it's more of a WP:Due weight situation (e.g., one source says the surprisingly high rates in people of African descent is probably genetic and another says it's probably due to environmental factors), then the relative quality of the citations matters. But when it's a question of "500 reported cases [ref 1]" vs "500 reported cases [ref 2]", I don't think that removing the "500 reported cases" part is the correct response. WhatamIdoing (talk) 21:47, 13 September 2020 (UTC)

I ~~stated~~ I also stated "lower-quality source." Compared to what WP:MEDRS outlines in its second paragraph, it is a lower-quality source. But as for it being low-quality? I'd call it that as well.

WP:ONUS absolutely applies in this case since the content is disputed. WP:ONUS is not about allowing content as long as it's reliable (borderline or otherwise). In fact, it makes abundantly clear that it's not about that. And I was already clear that this matter isn't about wanting an ideal source. Not solely about that anyway. I was concerned about a poor source being used. While we can debate whether or not these two sources are poor, they are lower-quality sources. Should an ideal source be used instead? Well, like I stated, it depends on what is available. Also, what is an ideal source can be subjective even with WP:MEDRS listing more than one type of ideal source. Some editors will consider a review ideal, but not an academic book source. Others will state that, while review articles are higher-quality sources, a systematic review is ideal for whatever being discussed. My point is that we should at least do better for information about signs and symptoms and causes. Information about what causes a disorder, disease, or other medical affliction, are often controversial, as is clear by the recent debate that took place at the Suicide article. WP:MEDRS doesn't at all state, "Oh, just go with the poorer source for no good reason." It has exceptions for going with lower-quality sources. It doesn't at all encourage editors to settle for the lower-quality source. It doesn't encourage editors to do just enough to get by. It validly encourages us to look for ideal sources. Editors commonly point out that WP:MEDRS has a higher standard for sourcing medical information. This is true. And for good reason. If we want to relax WP:MEDRS on that matter, then let's go ahead and do that instead of telling editors, "You just do you. If a significantly experienced editor challenges you on that, just thumb your nose at them and tell them to add better sourcing themselves." Flyer22 Frozen (talk) 23:00, 14 September 2020 (UTC)

I agree fully with WhatamIdoing. The text added seems uncontroversial and the source used is absolutely fine: written by an expert in the field, citing sources used, and published on a website with a reputation for being reliable. If you were aiming at FA then perhaps you'd want something else, but only to avoid nit picking. I certainly see no reason to revert or edit war over this. Wrt reverting other people's good faith edits and acceptable sources, "I wouldn't use" is not a consideration. -- Colin°^Talk 10:52, 14 September 2020 (UTC)

You stated "seems uncontroversial." But, again, signs and symptoms information, and especially causes information, is often subject to debate. And I've seen low-quality sources like this get those matters wrong or simplify things to the point where they are not relaying the matter as accurately or comprehensively as they should be. And low-quality sources like this get things wrong more often than high-quality sources do. And on top of that, as seen here and here, this editor has shown to not fully read or comprehend the sources they are adding. I don't even think this editor understands what is controversial information as far as medical content goes on Wikipedia. Plus, editors sometimes disagree on what is or isn't controversial information (medical or otherwise). As seen here, this editor just used a MedlinePlus source to add "Hormone replacement therapy can also reduce the likelihood of osteoporosis." Is that contentious enough to seek out a higher-quality source? Do we call that just a basic fact? A higher-quality source goes a long way in cases where what is controversial is contested. And even with this editor lacking an understanding of sources they add, I don't think the solution is to say, "Instead, go ahead and add those lower-quality sources you understand...or sort of understand." You call these two sources acceptable sources. If the sources are "just acceptable" (meaning borderline okay), we should only default to "acceptable sources" under certain circumstances. And stating that the content in question is non-controversial, and so these two sources are okay for that content, is obviously something we disagree on. Flyer22 Frozen (talk) 23:00, 14 September 2020 (UTC)

In particular, I'd have no qualms about citing them for whether something's rare disease (correctly identifying that is core to their work) and whether it's genetic (vs acquired).
The National Organization for Rare Disorders was founded around Tourette syndrome (TS) and the Orphan Drug Act, by the mother of a child with TS (even Wikipedia knows that), so it may not be surprising that I have an opinion about their accuracy. They are also located in Danbury, CT—less than an hour from the premier TS research group in the world, the Yale Child Study Center, so they well and good should know if TS is a rare disease.
But NORD is a 510 (c)(3) advocacy organization that depends on donations. And although it was well known by the turn of the century that TS was not a rare disorder, and it is often referred to in high-quality literature as "common", NORD continued to list TS as a rare disorder until at least May of 2019. Hallelujah, two decades (at least) after it was known that TS is not rare, they have finally removed it. I wrote the TS article in 2006, knowing then that TS was not rare, so they were 14 years behind even Wikipedia.
While it pains me greatly to disagree with my esteemed colleagues, NORD cannot be trusted even to identify what is a "rare disease", which is their core mission. They are a biased advocacy organization driven at times by fundraising issues, and I would use them as a source only VERY cautiously to NEVER. Is TS an exception because of the founder effect, where they did not want to offend her? I don't know. But Meyers retired in 2007, yet they still did not update their database. I wonder if it was a residual fundraising issue. But their information on TS was compromised for at least two decades. They are no more trustworthy than any advocacy org in my experience.
That said, the removed text could have had just the citation removed and replaced by a medical citation needed tag. SandyGeorgia (Talk) 15:25, 14 September 2020 (UTC)

Thank you for that. This is exactly why we should be using higher-quality sources for material such as this. Flyer22 Frozen (talk) 23:00, 14 September 2020 (UTC)

Well that's one disease and one example, which is not really a fair test of a website holding information on, I don't know, thousands of diseases. Each written in collaboration with different experts. I've just read their Tuberous Sclerosis page (another TS!) and frankly, I wish I could copy/paste the text into Wikipedia and I'd be most of the way towards an FA. It is comprehensive and accessible, despite an avalanche of specialist terms needed for this subject, and it seems pretty up-to-date. One might double-check a few of the prevalence figures or want to take the treatment section away from being so United States oriented, but it is really very good and makes me feel really bad about my own efforts on that topic. In contrast I've read plenty low-quality review papers that use out-of-date terminology or are unaware of recent diagnostic or neurological discoveries.

It is all well and good to have a TS lay-expert (either TS) on wiki who is already emersed in the quality literature. For the rest of Wikipedia, we do not have editors who have a special interest in the subject. And plenty editors do not have journal access or a library of professional neurology textbooks to draw on. Another big advantage of an editor using a reader-accessible source like rarediseases vs using a journal article written for neurologists, is that, unless you are a neurologist, then you are going to have to work hard to (a) understand what it is saying and (b) translate that into lay language for our readers. We've all seen student edits where they are using journal papers and clearly don't understand the first word of what they are reading.

Frankly, I smell elitism here, especially that the above comments descended towards personal attack to try to rubbish the ability of another editor. Wikipedia is the encyclopaedia anyone can edit, and if the edit improved the article text, which it did, then I see no reason to remove it just because any one of us here might personally have used another "better" resource. The approach where we revert-remove essentially correct content created in good faith by editors less perfect than ourselves will only end up with a medical Wikipedia edited by one person who thinks they are perfect. Let's not do that. -- Colin°^Talk 10:18, 15 September 2020 (UTC)

I agree with all of that (and recognized that TS may be an exception because of not wanting to offend the founder). But I should also mention that the 2019 archive.org version of Tourette syndrome that I linked above indicates that their content was GROSSLY wrong and outdated as well ... and by more than a decade as well. It reads as if they did not update if for more than ten years. Look at the paragraphs devoted to autosomal dominance (80s to 90s thinking that didn’t pan out), dated thinking on specific genes, grossly off information on medications, and OMG use of the word “uncontrollable”, when suppressibility is part of the TS definition, hence the word unvoluntary. I could go on. We should view this source with caution. Which does not mean we automatically revert anything sourced to it, rather, we look for better sources. SandyGeorgia (Talk) 13:22, 15 September 2020 (UTC)

I saw these replies on Tuesday night, but then a hurricane hit just as I was replying. So here's my reply now:

Pointing out that an editor is a newbie or otherwise less experienced and needs more experience editing articles, especially medical articles, is not a WP:Personal attack. It is not "[trying to] rubbish the ability of another editor." It is not any more that than when we comment on this talk page about issues with student editors editing medical articles due to their inexperience. It is not any more a personal attack than an editor noting issues with the editor's edits. I do not think I'm perfect whatsoever. I was clear that "Not unnecessarily settling for lower-quality sources is one way I improved as an editor." I am always improving as an editor, which wouldn't if I believed I was a "perfect person/perfect editor." It is your opinion that the edit improved the article text. But we aren't talking about just one edit anyway. As for the rest of what you've stated? I clearly noted that I've used sources such as WebMed and MedlinePlus. I've supported these types of lay sources for reasons you've stated. Nowhere have I stated that we shouldn't use sources like these for basic facts. But do I think that these sources and those like them should used for "causes" information or any other information that may be subject to debate? No. The NORD link that SandyGeorgia pointed to relays that "The exact cause of Tourette syndrome is currently unknown." And Wikipedia:Identifying reliable sources (medicine)#Other sources states, "Medical information resources such as WebMD and eMedicine are usually acceptable sources for uncontroversial information; however, as much as possible Wikipedia articles should cite the more established literature directly." So would I use NORD for information about the causes of Tourette syndrome? No. For a debated topic like that, I'm going for the higher-quality source.

If understanding the literature were so hard when reading higher-quality sources, then we wouldn't encourage using higher-quality sources. Academic books are often high-quality sources, as noted by WP:MEDRS, and it's not like they never explain a topic in a way that laypeople will understand. We do not need to settle for lower-quality sources just to understand what we are relaying. I would hate to think what the Circumcision article would look like if editors there simply settled for lower-quality sources. But, thankfully, we have editors like Alexbrn and MrOllie looking out for that article. And, really, per the WP:Competence is required essay, which is often given as a reason by admins for some blocks, an editor meaning well on a topic they do not understand is not always good enough. We do take into account editors' abilities and whether they are editing outside of those abilities. Just because this is the encyclopedia that anyone can edit does not mean that anyone should edit an area they don't understand. I don't care how well-meaning I am, I'm not going to edit a topic I don't understand and muck up the article. That's not about me succumbing to elitism. It's about common sense.

Right now, CycoMa has not a clue what is a good source to use for medical topics, even after being pointed to WP:MEDRS. And the lax approach to his edits displayed in this discussion isn't helping since he often just scours the Internet for whatever it says about a topic. What the lax approach has done has made it so that CycoMa thinks it's fine to add poor sources like this and then ask others to do the work for him if the source doesn't cut it. The editor should be encouraged to do better from the start. What the hell is pathologyoutlines.com, really? Encourage newbies in whatever way you want. Encourage CycoMa to add sources like pathologyoutlines.com. I'll be taking the True hermaphroditism article off my watchlist. And maybe a couple of other sex articles he keeps editing. Others can deal with the cleanup. I've successfully guided plenty of newbies (including student editors) to do better. And I'll stick to doing that since it's worked many times over. Flyer22 Frozen (talk) 18:44, 18 September 2020 (UTC)

Oh, I see that the True hermaphroditism article isn't on my watchlist. Good. I won't worry about it anymore. Flyer22 Frozen (talk) 18:51, 18 September 2020 (UTC)

I see several big differences in the examples you've given above.

First, when we discuss student edits, broadly, on a WikiProject page, we are a) often mostly critical of the professor for knowing nothing about how to edit Wikipedia but offering a course on just that; or b) worried that WikiEd doesn't have enough staff to deal with the effects of student editing; and c) discussing edits in broad general terms by what often amounts to paid editors, who almost never know how to or care to follow the broader discussion or return to Wikipedia to repay the favor of our tutoring them. That is, we aren't typically directly impugning a specific editor for not editing at an expert level, as has been done here with CycoMa.

Second, the TS example I give above is not and does not mean NORD does not meet MEDRS for some circumstances. I gave it as an example to counter the notion that it is a superior source, explain that even superior sources are often wrong (I have an even worse example on Tourette's from the New England Journal of Medicine) when like all sources, editor discussion and consensus apply as to what sources to use for what purposes in different articles. I hope we don't expect all editors to have the in-depth knowledge about sources on one topic that is at Featured level.

Besides that, if MEDRS doesn't explain things clearly enough to "give a clue", that is our fault (all of us) for having let the page stray over the last five years, to the point of being barely useful and also to the point of being used as a bludgeon rather than a guideline for discussing and helping find best sources, which are context dependent. That is what is happening here, and I am very concerned about the tone CycoMa has been exposed to in the whole paragraph about "CycoMa has not a clue". Wikipedia is about collaboration, and this does not look like appropriately taking an opportunity to explain to a new-ish user how different sources may or may not be best in different contexts. I had hoped that the TS example would do that, and I am sorry if I failed. Hermaphroditism is not Tourette's, and is not a Featured article, and I see a good-faith editor citing a MEDRS source but being taken to task for doing just that. At a time when we should be focused on recruiting and retaining editors who at least cite MEDRS-compliant sources. SandyGeorgia (Talk) 17:31, 19 September 2020 (UTC)

Sandy, regarding the student editing discussion I pointed to, different problems were highlighted. Of course, it starts with the instructor for not preparing and/or instructing the class well enough. It's still the case that these student editors -- who are usually newbies to editing Wikipedia and who weren't sufficiently trained -- lack important experience and create a number of issues at articles. I've seen well-instructed student classes here and there, but they are few compared to the many sloppy or just plain poor ones.

Nowhere have I stated or implied that CycoMa should edit at an expert level. If I had, then I wouldn't have categorized CycoMa as a newbie or significantly less experienced editor. These latest interactions I've had with CycoMa are all that you see, but I've interacted with CycoMa for months now. And the way he started out... Well, it was a problem, as made clear by Mathglot on his talk page. What I expect from CycoMa is for CycoMa to listen when pointed to guidelines and policies and to try his best to follow them. He has given no indication that he has tried to understand the way Wikipedia works, and that includes trying to understand WP:MEDRS. While he stated to Mathglot on his talk page that he has made mistakes, owning up to one's mistakes and learning from them are two different things. CycoMa continues to make the same mistakes again and again. And although practice is how we improve, I don't see that he's trying to learn from his mistakes. Well, for the most part anyway. For example, if I tell him, per WP:Talk, not to blank a talk page section that has replies in it just because he started it and doesn't want it on the talk page anymore, and he does it again weeks later, that's obviously not learning from the mistake. I and others, including Mathglot, have given CycoMa chances to do better. Also, like I mentioned above, what is "expert level" editing depends on the subject when it comes to an editor's abilities. If by "expert level", you simply mean "experienced editor", well, then I just noted that I don't expect CycoMa to be an experienced editor already.

As for newbies not understanding WP:MEDRS, I've guided plenty of newbies who had no trouble understanding it after actually taking the time to read it. Not all will understand it as easily, but the same applies to some of our other policies or guidelines, such as WP:Fringe. If they didn't understand something about WP:MEDRS, they would ask. They also improved via practice. CycoMa can obviously just ask instead of repeatedly trying to do things his way. I've dealt with plenty of newbies just fine. If I hadn't, then you would not have stated not even that long ago to Memdmarti that he "would be well served to work with Flyer22 and other experienced Wikipedians." I mentioned back then that Memdmarti is a newbie editor; his 2008 edits don't change that. And he has greatly improved as an editor...without my help. Perhaps he can speak in this section of his experience understanding WP:MEDRS and growing as an editor.

Given that I've been with Wikipedia for as long as I have (since 2007) and collaborated with plenty of editors with no issue, I obviously know that Wikipedia is about collaboration. I don't appreciate being painted as someone who doesn't know that and is just picking on a newbie or being overly harsh on a newbie. I've dealt with plenty of editors who simply had no clue and didn't improve for whatever reason, with a number of them not even trying to improve. I'm for recruiting and retaining editors who are willing to listen, learn, and, as a result, know when they are and aren't citing MEDRS-compliant sources. Flyer22 Frozen (talk) 19:34, 20 September 2020 (UTC)

I commented tons of sources in the talk section of True hermaphroditismwhich sources do you think will do? CycoMa (talk) 04:35, 15 September 2020 (UTC)

Fine I’ll remove the edits. CycoMa (talk) 19:34, 18 September 2020 (UTC)

CycoMa I hope you don't think that what you have received here is acceptable treatment for a newish editor trying to follow guidelines, and I hope you'll keep trying. SandyGeorgia (Talk) 17:31, 19 September 2020 (UTC)

Regarding acceptable treatment, I replied above. And I stand by it. Flyer22 Frozen (talk) 19:40, 20 September 2020 (UTC)

Thnak you, Flyer22 Frozen! I would have asked you more, but SandyGeorgia was always available. My major problem with WP:MEDRS was, and still is, accepting that secondary references are more reasonable than primary. I am OK with it now, even though I do not agree. The rest was the time needed to learn the application of rules. If I were not retired, I would have stopped early. In retirement, it is a reasonable mental exercise. Dan -- Memdmarti (talk) 21:21, 20 September 2020 (UTC)

It may seem silly, or even harmful, but we've come to the conclusion that, on balance, we end up with less garbage this way. We have had some editors who went overboard with it (and a lot of editors who still don't know that Wikipedia:Secondary does not mean independent or that Wikipedia:Secondary does not mean good – the craziest crackpot who summarizes a pile of scientific papers on a personal blog is writing a secondary source that nobody should ever use), but on balance the approach gives us more somewhat benefits than harms. WhatamIdoing (talk) 23:11, 20 September 2020 (UTC)

So what do y’all suppose? Add NORD as a source or not? CycoMa (talk) 00:55, 21 September 2020 (UTC)

@CycoMa: it is important that you understand that whether to use any given source for any given text in any article is not a black-and-white, add-it-or-not decision, rather often it is a matter of consensus and context, as evidenced by this discussion. This is decided via talk page discussion. If you use the Tourette's example (assuming NORD had not finally taken down their faulty information), you can see that I would be justified in wholly reverting any claim cited to NORD that TS is a "rare disease", even though NORD is generally a MEDRS-compliant reliable source. In that case, you would see me place dozens (scores, hundreds) of higher quality secondary reviews explaining that it is NOT rare on the article talk page to justify my revert. (For similar reasons, I could wholly revert just about anything about TS sourced to them, since they were so outdated, but that does not mean the situation is the same for every article.)

Reverting reliably sourced content without a reason is never acceptable, and there has been no policy-based reason explaining why your edits were reverted. That does NOT mean your edits were good, rather that they need to be discusssed and reviewed in relation to underlying higher quality secondary sources, if those are available. If no one else will do the research, then you might want to do it yourself. Are there recent higher quality secondary sources that disagree with the text you placed? Do you know how to do that search, or do you need further guidance here from us? If so, are there due weight issues, or do both sides need to be presented? Long story short, you need to do your homework here, and if you are again reverted, the person reverting needs to do theirs. SandyGeorgia (Talk) 14:51, 24 September 2020 (UTC)

I think the problem is that Flyer22 Frozen has confused advice that generally tends towards sources written for professional medics and academics with the fundamental rules of reliable / verifiable sources on Wikipedia that could be used to justifying reverting/removing text. For example, I can source "Sunburn usually resolves itself in a week" to NHS: Sunburn. The NHS pages are aimed at lay readers and likely (over) simplify some material but nobody would doubt it a reliable source, even if some advice is controversial with some "experts". But I wouldn't use the NHS page if writing an article that aims to be a Featured Article. They'd expect a professional source. Since Wikipedia can't invent new facts, and must use its own words, in some ways it is a bit like Bible translation where you are writing an accessible edition. You could translate an accessible French edition into accessible English, but it would be better if you translated from the original Hebrew or Greek. But if you can't read Hebrew or Greek, then a version translated from French is better than nothing and likely 99% of it would be just fine. There are a whole range of "acceptable" sources for medical text, and just because one editor may have high personal standards for the sources they use, doesn't entitle them to remove content that meets community accepted standards. That's how we got here. -- Colin°^Talk 15:34, 24 September 2020 (UTC)

I haven't confused anything. I've been clear. But, sure, go on and keep painting me in a light that doesn't hold up when it comes to my history editing Wikipedia. Keep going on with nonsense such as "high personal standards" and "That's how we got here." Whatever. Considering ~~my recent disagreements with you and Sandy~~ the recent bickering involving you, me, and Sandy at Wikipedia talk:Manual of Style/Medicine-related articles, it's not like I put much stock into a thing that you state, especially as far as it concerns me. All I see is an editor supporting inappropriate behavior because of a personal grudge. Instead of walking away, you just had to come back with more. I really should know by now not to take the bait when it comes to you two. But I'm not going to sit here and let you badmouth me. I don't want to hear anything about "Flyer is engaging in a personal attack" when I defend myself against baseless attacks from you or anyone else. I already told you that you can't run me off WP:Med or Wikipedia. You really should be trying to retain all the experienced WP:Med editors you have instead of trying to clean house. A lot of or most of these newbies will not be here for the long-term, which is why this WikiProject mainly has the same editors it had years ago. Flyer22 Frozen (talk) 23:54, 24 September 2020 (UTC) Tweaked post. Flyer22 Frozen (talk) 00:30, 25 September 2020 (UTC)

And as for "and there has been no policy-based reason explaining why your edits were reverted"? Incorrect. I and others have reverted CycoMa across multiple articles for guideline or policy-based reasons. And reverting a poor source per WP:MEDRS is indeed a guideline-based reason. I considered the source poor and brought the matter here to ask about the source. Editors disagreeing about the quality of a source and/or on how to apply WP:MEDRS, just like editors disagree on how to apply various other Wikipedia policies and guidelines, happens all the time. And yet two editors have turned this into some silly "Flyer was misbehaving" matter. Even going with the notion that I am wrong about NORD being a poorer source (even though it clearly is a poorer source when compared to various options one can use instead), an editor reverting because they consider a source a poor source and then bringing the matter to an article talk page or related WikiProject talk page to discuss it is perfectly acceptable.

I think I should send CycoMa to one of the articles you two care about. I'm sure he'll get a lot of experience that way and you two will embrace all of his edits. Flyer22 Frozen (talk) 00:30, 25 September 2020 (UTC)

Im not affraid to support Flyer, or anyone else w/ similar views, in her above comments(and I believe Im not alone)--Ozzie10aaaa (talk) 01:21, 25 September 2020 (UTC)

Whether a source needs to be merely reliable enough to support the given sentence, or if it needs to be impressive (e.g., an academic journal or other sources whose primary audience is researchers or physicians) has been debated for several years now. For basic information such as how long a sunburn lasts, some editors prefer a source that's free to read (e.g., open-access journal), some prefer a source that's easy to read (e.g., NHS website), and some prefer an academic source (e.g., a medical textbook or academic journal).

IMO the important point is that if someone uses a source that we think isn't one of the better kinds, but we have no reason to think the content is wrong, then we shouldn't blank apparently good content. We can tag it with Template:Better source needed or similar, but we shouldn't just blank it. WhatamIdoing (talk) 01:36, 25 September 2020 (UTC)

And the way I assess if something is correct or not is by the quality of the source. That's what we are supposed to do. Let's say that the source had been used to state that Tourette syndrome is rare. And the information would have been incorrect. Well, that is all the more reason to use a better source to begin with. It's not like I am an expert on every single thing. None of us are. And we shouldn't be taking the word of some poorer quality source. I brought the matter here not only to have others help me assess the source...but to also look into what the source is being used for. At least you looked into whether other sources support the content. Flyer22 Frozen (talk) 02:04, 25 September 2020 (UTC)

Flyer22 Frozen, that's three editors you've made personal attacks on, and several editors who have told you they think your revert was wrong. Rather than assuming you are being told this as part of some personal grudge or some conspiracy to "run you off WP:MED", you might want to WP:AGF and consider you are being told this because they really do just think what you did was wrong. It is importantly wrong, because this is the encyclopaedia anyone can edit. I shall be making an admin complaint if the personal attacks continue, and that includes Ozzie10aaaa doing a +1 on any personal attacks too. -- Colin°^Talk 16:44, 25 September 2020 (UTC)

Why are you pinging me as though I'm not watching you spew your nonsense? It's been established before, including by a different editor, that your idea of what falls under our WP:Personal attacks policy is highly questionable. And for someone who makes them against me, your lack of awareness on that matter is concerning. First, you make the asinine claim that I'm engaging in "elitism here." You then make the asinine claim that pointing out that an editor is a newbie or otherwise less experienced and needs more experience editing articles, especially medical articles, is a personal attack/"[trying to] rubbish the ability of another editor." After that, you come back days later to then make the asinine claim that "Flyer22 Frozen has confused advice that generally tends towards sources written for professional medics and academics with the fundamental rules of reliable / verifiable sources on Wikipedia that could be used to justifying reverting/removing text", that I "have high personal standards", that I feel I'm entitled "to remove content that meets community accepted standards" and "That's how we got here." And when I defend myself by noting that you are responding the way you are responding due to a personal grudge, and that I'm not going to sit here and take it, I'm the one engaging in a personal attack? It's a personal attack to say that I don't put much stock into what you state? It's a personal attack to call your attacks against me asinine? I would really love for you to try and have that stick at WP:ANI, where actual personal attacks are reported. You know, the type of personal attacks involving name-calling or saying things like "kiss my ass." Significantly experienced editors are not even sanctioned for stating something like "kiss my ass." And you think you have a case against me? Your idea of what is worth reporting is so out of step with how Wikipedia works that I can't help but shake my head. Ozzie10aaaa is not going to get into trouble for stating "Im not affraid to support Flyer, or anyone else w/ similar views, in her above comments(and I believe Im not alone)." I really wonder why you think he would get into trouble for that. I really wonder why you think I'd cower at your threats. I really wonder why you think you have the power to get me sanctioned. I really wonder why you think I'd be sanctioned for anything I've stated above. But go on then. You and/or Sandy are more than free to report me. If it's that you are looking to report me to an admin who is impartial to you and have me blocked that way, I can tell you right now that the block would be overturned and swiftly. Admin Girth Summit can go ahead and tell us right now if anything I stated above is going to get me into some serious trouble.

You stated that I've done wrong. Hmm. WP:MEDRS contrasts that. WhatamIdoing's "01:36, 25 September 2020 (UTC)" post about source preference contrasts that. Sandy's commentary from 2014 contrasts that; I have the receipts. As seen at Wikipedia talk:Identifying reliable sources (medicine)/Archive 10#Mayo: how did this happen ?, we can see Sandy complaining about editors using borderline sources (also known as poorer sources), Mayo Clinic in particular, and pointing to Wikipedia talk:WikiProject Medicine/Archive 49#Psychiatric Times and MEDRS, where I state, "Yes, the Psychiatric Times passes WP:MEDRS; it passes along with New Scientist and Scientific American, WebMD, UpToDate, Mayo Clinic, and eMedicine under MEDRS's Popular press and Other sources sections. And it's often a better source than one or more of those sources." So what is one thing Sandy stated? She stated, "We seem to be leaving the impression that borderline sources are on par with the many and much better sources available." Interesting that, back then, Sandy was the one cautioning against using borderline sources and I was the one stating, "I agree with WhatamIdoing and we just discussed this topic in the Other sources section above. I don't see that we need to prohibit decent or good laysources. Being overly strict in that way is not hugely beneficial, or always beneficial. Like I stated there, '[Do] I sometimes use WebMD sources on Wikipedia? I indeed do, usually as an interim for scholarly sources and/or as an adjunct to scholarly sources. Using a laysource in combination with a scholarly source has repeatedly proven beneficial for readers at various medical articles, or specifically at anatomy articles, especially in a WP:PAYWALL case. That's also why Template:Citation Style documentation/lay exists. WP:Reliable sources that accurately explain medical matters in plain English are always beneficial.' But if WP:MEDRS editors form a WP:Consensus to be overly strict on this matter, there's not much I can do about it but adhere to that WP:Consensus." So very interesting indeed. At least WhatamIdoing has consistently supported borderline sources in the way she has supported them in this 2020 discussion. As for me? I noted above that I evolved as an editor. Contrasting what I stated back in 2014 with what I've stated above, that's obvious. And yet now I should be dragged through the mud for having a viewpoint ~~she~~ Sandy has expressed on multiple occasions? Sure. That makes sense.

Stop being disingenuous. Stop being irresponsible. Right now, you are giving a significantly less experienced editor the impression that it's perfectly acceptable to source an entire medical article to NORD, WebMD, or some other lower-quality source unless the article is a WP:Featured article. And that's false. We don't only care about quality sourcing for featured articles. We never have. The "let's use a lower-quality source" route should only be taken occasionally, including when a topic is so rare or lacking attention in the medical literature that one has to rely on lower-quality sources. The topics in question are not topics like vaginal steaming or husband stitch, where editors have to rely on media sources and other lower-quality sources. The "Popular press" and "Other sources" sections of WP:MEDRS are about lower-quality sources that should be used sparingly. Stop making it seem as though they are simply alternative sources to use. They are not. They are exceptions, and that's a fact. Flyer22 Frozen (talk) 01:08, 26 September 2020 (UTC)

Fine its settled, I wouldn't add the source. I'll do more research and try to find a better source. In the meantime, I'm not gonna touch that article.

The reason I added NORD and Orphanet was because it was easy to access, I also checked the sites and they seemed like reliable sources. Not to mention the information presented within the sources was information I found within a lot of other sources. A lot of sources mentioned facts like there being 500 confirmed cases and that a majority of individuals were raised, male.

So I'm not cherry-picking nor I am lying.

Plus it's an extremely rare disease so it's not like the information is easy to find. Some information is really hard to find. Most major medical organizations don't talk about this disease.

Some sources are hard to access, some require me to pay for them. Like this source here. costs 30 dollars. It's ridiculous to spend 30 dollars just to add a few sentences to a Wikipedia article. I can't assess it through an institution either because my school doesn't use OpenAthens.

Even books that have previews Like this book. Leave out certain sections that may or may not have vital information.

I am trying my best to find sources. But at the same time, I have a life. I can't just look through every single medical website just to find one source for a single sentence.

It would also be nice if someone helped me find sources. Barely anyone edits that article True hermaphroditism that also goes for several articles I edit. CycoMa (talk) 04:43, 25 September 2020 (UTC)

Also does NORD being wrong on TS really mean they are wrong on everything? Some really good sources can be wrong on some subjects but correct on others.CycoMa (talk) 04:48, 25 September 2020 (UTC)

One of the ways that we identify good sources is by seeing whether they are willing to own up to past mistakes. Even the very most reputable sources have gotten some things wrong. The whole hoax about MMR vaccines being associated with autism was started by a paper in The Lancet. WhatamIdoing (talk) 16:46, 25 September 2020 (UTC)

Oh, and not only a respectable journal, but the author was a fellow of the Royal College of Surgeons, and the son of a neurologist and a GP. We know that he hasn't admitted that was a mistake, but The Lancet took 12 years to retract the paper and the reputation of its editor has never really fully recovered. So one might hope a reliable source would quickly admit mistakes, but perhaps not. It might be a reasonable rule-of-thumb guide to identifying a good source, but I think our WP:V requirement for "a reputation for fact-checking and accuracy" means a reputation among its peers and critics in publication rather than a reputation among Wikipedians. The two are often aligned, but if Wikipedians disagree, then it might be worth finding out what other publications say. -- Colin°^Talk 17:08, 25 September 2020 (UTC)

CycoMa, no one has called you a liar. I've pointed you to WP:MEDRS and to seek out better sources for reasons I've stated above. It's often very easy to find material on Google Books from academic book sources. I've pointed this out to many newbies and they were thankful and improved as editors that way. So, like I mentioned above, that is one quality outlet. It is a quality outlet that often doesn't require you to pay money. And if you need fuller access to a book source or other source, you can ask for access at Wikipedia talk:WikiProject Resource Exchange/Resource Request. Flyer22 Frozen (talk) 01:08, 26 September 2020 (UTC)

I was pinged above, and have dutifully read through the thread. I don't claim to be any sort of special authority on the WP:NPA policy and its interpretation and implementation, but for what it's worth I am not seeing anything that I would interpret as a personal attacks jumping off the page at me here. I'm seeing a number of exceedingly experienced Wikipedians discussing a source, and a related discussion going on alongside that about how best to support a less experienced editor as they gain experience - none of this seems to me to require administrative attention, you guys all know what you're doing. Thanks for working to improve our content CycoMa, and the rest of you. GirthSummit _(blether) 12:21, 26 September 2020 (UTC)

Examining the reliability of National Organization for Rare Disorders

@CycoMa:, I'm sorry for the delay (and sorry your question wasn't addressed while I went to the woods).

Some sources are hard to access, some require me to pay for them. It has become harder to get hold of sources during COVID, and I often have to resort to having friends email me articles; as an editor of medical topics, you may need to develop such contacts, or go to the Resource Exchange mentioned, or just inquire here on talk if someone can send you a specific source. Using scholar.google.com, books.google.com and Pubmed to locate sources will also help. I helped develop this resource years ago, so bits of it are out of date, but it should still be useful to get the overall gist.

It would also be nice if someone helped me find sources. No one yet has answered to explain what specific problem there is with the text you added, and why it should be blanked rather than replaced with a "better source needed" template, so I dug in to search for the underlying literature on this part sourced to NORD. My search is likely incomplete, as I was working from a hotspot in the car on an iPad, but I think I have found an answer that we might all be able to work with. First, I searched PUBMED for secondary reviews within the last five years.[1] I was unable to locate mention of the 500, rather multiple instances of a reference to incidence as 1/100,000. But one review (which I didn't save) pointed me to a 2015 secondary review that discussed incidence, Nistal 2015, PMID 25105460. Nistal also cites an incidence of 1/100,000 and discusses the 500 number, pointing to ... ta da ... a 1991 source, at PMID 2014286 !! Someone else may find something better, but best I can tell, that is the source of the 500.

NORD says, Ovotesticular DSD is the rarest disorder of sex development in humans and has an approximate incidence of less than 1/20,000. At least 500 affected individuals have been reported. [2] So, I don't know what explains the five-fold difference in incidence, but while their statement that "at least" is not incorrect (since that was a 1991 number, so it is "at least" true), neither is it a very helpful piece of data since it is three decades old. And this ties with my experience on Tourette's with NORD, where in a discussion that stays focused on content, I can give specific examples of why I would be correct to revert any text added on Tourette's from NORD.

Aside, all of the recent sources I found seem to suggest that true hermaphroditism is not correctly titled, and it is not "sometimes referred to as ovotesticular disorder", rather that it was once referred to as true hermaphroditism and is now more correctly called ovotesticular disorder. Should we develop consensus to move the article, we would need to understand what led to this move and how to fix it.

You asked, Also does NORD being wrong on TS really mean they are wrong on everything? No, not at all. A sample of one is not adequate to make that call. We have in this discussion Berchanhimez saying to use the source, along with WAID saying to use it for some kinds of text; Colin examining a topic he knows quite well and saying that NORD is good; and only me presenting an example where they were way off, but admitting it could be a unique case because the organization was founded around Tourette's and they may have been afraid to offend the founder. Not a good excuse, but possibly an explanation. I will again try to explain that it's not a black-and-white call, and depends on text being sourced. The idea that we could label any source unreliable based on N=1 won't work, because I have worse examples of TS misinfo from the highly regarded New England Journal of Medicine (PMID 11642235 which they did NOT retract after a physician wrote to the editor noting the egregious error, PMID 11870255 rather gave the original author the right to rebuttal, where he explained that it was his opinion, allowing the NEJM to spread misinformation about TS to all its readers without retraction), and other examples from the NIH (where they have refused/failed to update their misinfo for years even when repeatedly contacted. To this day, the NIH states that Georges Gilles de la Tourette ... in 1885 first described the condition in an 86-year-old French noblewoman; in fact, Itard described the same woman decades earlier. They have corrected some of their other errors though). So even expecting journals or reputable organizations to correct errors can't always be our only guide; if that were the case, I would have a pretty glaring example for calling a highly reputable journal non-reliable! Editor discussion and consensus is how we make these decisions, and WP:FOC as opposed to WP:BATTLEGROUND are good to keep in mind, as we work towards consensus.

In the mischaracterized (and personalized) discussion about Mayo above, the query was how Mayo came to be added to the MEDRS page as an exception based on no discussion (not whether we should blank text sourced to Mayo or replace it with a "better source needed" template). Does NORD need a separate call out in MEDRS? I suggest that we now have two examples where NORD has shown to be less than helpful (Tourette's and Ovotesticular disorder), so we should hold a discussion to examine more of their information and develop consensus about how to use them as a source. We would need to examine more cases than the two we have so far, but I not impressed by their three-decades-old information on the number of cases of ovotesticular disorder. I can accept that the 500 number has perhaps not been explicitly updated since 1991 (and that would be a good number to add to a History section of the article), but the discrepancy in incidence needs to be sorted, and it is entirely possible I missed something as I was reading/researching from an iPad hotspot.

Sorry it has taken over two weeks to get some examination of sources and hopefully answer the underlying questions; I hope we will do better going forward, as we should take an in-depth look at NORD. SandyGeorgia (Talk) 16:38, 29 September 2020 (UTC)

[M]ischaracterized (and personalized) discussion about Mayo above"? It's right there for everyone to see: Wikipedia talk:Identifying reliable sources (medicine)/Archive 10#Mayo: how did this happen ?. It is easy to see that the discussion is about using Mayo Clinic and sources like it. Mayo Clinic has stayed out of the guideline because of that discussion and one editor even stated that we should not use Mayo Clinic or WebMD. But I've stated all I need to state in this discussion. Flyer22 Frozen (talk) 00:31, 30 September 2020 (UTC)

Sandy, I think it is a bit unfair to criticise NORD for the "500 cases reported" figure being 30 years old. The review from 2015 you found also cited that figure, which would have then been 25 years old. So if an academic publication thinks 25-year-old figures are the best we have, then maybe there isn't anything newer. The source of the 1/100,000 figure is PMID 11534012 (published 2000) which says there are no published population-wide estimates but takes 14 reports together to work out an estimate. And it is a very crude estimate. They look at the frequency of this in reports compared to "classic 21-OHase congenital adrenal hyperplasia (CAH)" which has a better established frequency per live births (0.0779/1,000 live births). They form an upper bound(19%) taking all 14 reports and a lower bound (11%) by excluding South Africa, which seems to be an outlier, and two reports that might contain duplicate date and then "split the difference" to get 15%. Looking at their table 7 for the 14 individual reports, we see very low numbers and how hugely out of step the South African report is. It makes one appreciate the 1/100,000 figure is extremely approximate, and dependent on the incidence of Congenital adrenal hyperplasia due to 21-hydroxylase deficiency. That article cites PMC 6456929 which gives "∼1:14,000 to 1:18,000 births" and the 1:14,000 figure seems to have been the one used by the other source. That paper has a table comparing incidence varying per country, with Indian and China as low as 1:6,000 and New Zealand as high as :1:26,000. That's a four-fold variation depending on where you study, being used to multiply another figure that varies greatly depending on where you study (e.g. South Africa).

As for the NORD "approximate incidence of less than 1/20,000", that isn't wrong and I haven't looked at where that came from, but (a) at only a fifth of the 100,000 figure, it is IMO within the error-bars of that figure, and (b) it may have resulted from grouping (i.e. classifying incidence into groups where the one group is < 1/20,000).

The population frequency figures at this level of reporting and quality of data are going to be very poor and also suffer perhaps from changing how we classify and name these conditions over time. Certainly that figure includes reports going back to 1960, when we didn't even have genetics. -- Colin°^Talk 10:30, 30 September 2020 (UTC)

Thanks for doing the real work, Colin; there is a wayward 1/68,000 above-- did that get left out somewhere?

All of this sounds reasonable to me, and I can't say we yet have a "case" against NORD, but still think we might look further. It is not actually used that often on Wikipedia; see external links search here. Most of the instances are to Keilana's work space. It would not be hard for each of us to pick one and do a deep dive on the usage on Wikipedia, to check each instance versus the underlying literature. I am more than willing to grant that Tourette's could be an exception, related to the founder effect.

But more significantly, this provides a good example of how to use sources to improve content. Perhaps another example will make things more clear for CycoMa, and deal with the confusion between what Flyer is saying about the Mayo issue, and what the rest of us are (trying) to say. That is, we don't blank good text without a valid reason; we can ask for a better source, or do many other things short of blanking text. There appears to be nothing wrong with the text added by CycoMa (even though we have shown how to improve the content by going to the underlying literature ... for example, if the 500 is added back, it can now be specified that was a 1991 number). We can see from this example why going to the underlying journal literature yields better information-- even if the original information was not wrong. In such cases, the text is left, but better source can be requested. As another (hypothetical) example, I'll mix Mayo and Tourette's for illustration purposes, since everyone following this discussion may understand the TS example now, but Flyer is saying something different about Mayo than I'm saying. If someone added "TS is a rare disorder" cited to Mayo, I could blank the text; it is wrong, and I could demonstrate on talk why it is wrong. Regardless of source used. I am not blanking the text because Mayo is not a MEDRS source; I am blanking the text because it is wrong in some way (eg, disproven by better sources, an outdated primary study not mentioned in secondary reviews, UNDUE, etcetera-- some policy-based reason for removing text). If someone added "TS is a common disorder" cited to Mayo, I should not blank the text just because it is cited to a less than ideal source; I would remove the citation and add a tag for a better source. It's important that we not send the wrong message to CycoMa here that will lead them in the future to blindly removing text because they think the source is less than ideal. In the whack-a-mole quest that has taken over medical editing in the name of MEDRS, it's too easy to forget that MEDRS explains sources in the context of WP:RS, and WP:V is the underlying policy they both support. Whether or not Mayo is specifically mentioned on the MEDRS page, the principles are what matter. SandyGeorgia (Talk) 14:31, 30 September 2020 (UTC)

Sandy, we are all, with the exception of the OP who asked the question, in furious agreement. I note from the article (and history) that one of the facts (1:83,000) comes from ISNA, which in turn cited the same paper from 2000 that I discussed (the 1:83,000 or 1:100,000 figure depends on whether you look at a table or the body text, each of which rounds/presents the figures differently). CycoMa, that ISNA page isn't a great source because that whole website is stale as of 2008 and there is a footnote at the bottom admitting the figures even then were in need of updating. And the 500 figure was written in the article as "Only 500 cases have been reported in medical literature" but the source said "At least 500 affected individuals have been reported." So the article text didn't really match what the source was saying: you gave an upper-bound where the source gave a lower-bound. Wikipedia is a work in progress, and that includes its editors. -- Colin°^Talk 15:07, 30 September 2020 (UTC)

Sandy, you stated, "but Flyer is saying something different about Mayo than I'm saying." I'm not. I haven't spoken of banning the source or never using the source. I was clear that I brought the matter here to get opinions on the source, in part because I know that the source is a poorer source and it was used for something that I do not think a poorer source should be used for. I was very clearly keeping WP:MEDRS's guidance about such sources in mind. Again, these are not simply alternative sources to use. They are exceptions; they are sources to use under certain circumstances. The other reason I questioned the source and brought the matter here is because I'm not familiar with it. I told WhatamIdoing above that the way I assess if something is correct or not is by the quality of the source. That's what we are supposed to do. I emphasized using better sources, and especially for material that is likely contentious/controversial. In the discussion about Mayo Clinic, you clearly stated, "We seem to be leaving the impression that borderline sources are on par with the many and much better sources available." You pointed to a discussion where I supported using borderline sources, for reasons you, Colin, and WhatamIdoing have tried to lecture me on in this discussion. I didn't "blank good text without a valid reason." This wasn't just about removing a source that is, or likely is, non-WP:MEDRS compliant. I told WhatamIdoing above that "It's not like I am an expert on every single thing. None of us are. And we shouldn't be taking the word of some poorer quality source. I brought the matter here not only to have others help me assess the source...but to also look into what the source is being used for." We are very much allowed to remove content that we suspect is wrong or somewhat inaccurate and take it to the article's talk page for discussion. Wikipedia editors validly do that all the time. I've misrepresented nothing about that Mayo Clinic discussion. But, as usual, you and Colin have misrepresented me and my arguments in this discussion. Nice teamwork there. If you aren't going to listen and are instead going to keep reiterating a false narrative about my motives and arguments, then do move on. It's not like this back and forth is helping. Flyer22 Frozen (talk) 00:15, 1 October 2020 (UTC)

I think we've had enough of this discussion here. WhatamIdoing (talk) 02:51, 1 October 2020 (UTC)

Usage of NORD on Wikipedia

From this search, articles we can check for NORD reliability vs. underlying literature (please add notes to any you review): SandyGeorgia (Talk) 14:58, 30 September 2020 (UTC)

http://rarediseases.org/get-involved/join/participate-events/rare-impact-awards/ Arthur Caplan
http://rarediseases.org/nord/programs/links/member International Dravet Epilepsy Action League
http://rarediseases.org/rare-disease-information/rare-diseases/byID/979/viewAbstract De Barsy syndrome
http://rarediseases.org/rare-diseases/acanthocheilonemiasis/ Acanthocheilonemiasis
http://rarediseases.org/rare-diseases/acromesomelic-dysplasia/ Acromesomelic dysplasia
http://rarediseases.org/rare-diseases/acute-eosinophilic-pneumonia/ Acute eosinophilic pneumonia
http://rarediseases.org/rare-diseases/aids-dysmorphic-syndrome/ AIDS dysmorphic syndrome
http://rarediseases.org/rare-diseases/ameloblastic-carcinoma/ Ameloblastic carcinoma
http://rarediseases.org/rare-diseases/amyloidosis/#supporting-organizations Amyloidosis
http://rarediseases.org/rare-diseases/atr-16-syndrome/ ATR-16 syndrome
http://rarediseases.org/rare-diseases/autosomal-dominant-porencephaly-type-i/ Autosomal dominant porencephaly type I
http://rarediseases.org/rare-diseases/blepharophimosis-ptosis-epicanthus-inversus-syndrome/ Blepharophimosis, ptosis, epicanthus inversus syndrome
http://rarediseases.org/rare-diseases/blue-diaper-syndrome/ Blue diaper syndrome
http://rarediseases.org/rare-diseases/citrullinemia-type-1/ Citrullinemia type I
http://rarediseases.org/rare-diseases/congenital-bilateral-perisylvian-syndrome/ Congenital bilateral perisylvian syndrome
http://rarediseases.org/rare-diseases/congenital-lactic-acidosis/ Congenital lactic acidosis
http://rarediseases.org/rare-diseases/erdheim-chester-disease/#supporting-organizations Erdheim–Chester disease
http://rarediseases.org/rare-diseases/familial-eosinophilic-cellulitis/ Eosinophilic cellulitis
http://rarediseases.org/rare-diseases/ferroportin-disease/ Hemochromatosis type 4
http://rarediseases.org/rare-diseases/hailey-hailey-disease/ Hailey–Hailey disease
http://rarediseases.org/rare-diseases/heavy-metal-poisoning/ Heavy metals and Toxic heavy metal
http://rarediseases.org/rare-diseases/cholesteryl-ester-storage-disease/ Hepatomegaly
http://rarediseases.org/ Hyperimmunoglobulin E syndrome
http://rarediseases.org/rare-diseases/hypokalemia/ Hypokalemia
http://rarediseases.org/rare-diseases/sporadic-inclusion-body-myositis/ Inclusion body myositis
http://rarediseases.org/rare-diseases/locked-in-syndrome/ Locked-in syndrome
http://rarediseases.org/rare-diseases/marfan-syndrome/ Marfan syndrome and Pleiotropy
I will check these, as I've long edited there and have some familiarity. SandyGeorgia (Talk) 14:58, 30 September 2020 (UTC)
http://rarediseases.org/rare-diseases/hyper-igd-syndrome/ Mevalonate kinase deficiency
http://rarediseases.org/rare-diseases/nemaline-myopathy/ Nemaline myopathy
http://rarediseases.org/rare-diseases/non-24-hour-sleep-wake-disorder/ Non-24-hour sleep–wake disorder
http://rarediseases.org/rare-diseases/oculocutaneous-albinism/ Oculocutaneous albinism
http://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/ Opsoclonus myoclonus syndrome
http://rarediseases.org/rare-diseases/glycogen-storage-disease-type-vii/ Phosphofructokinase deficiency
http://rarediseases.org/rare-diseases/torch-syndrome/ TORCH syndrome
http://rarediseases.org/rare-diseases/chromosome-9-trisomy-9p-multiple-variants/ and http://rarediseases.org/rare-diseases/chromosome-9-trisomy-mosaic/ Trisomy 9
http://rarediseases.org/rare-diseases/vogt-koyanagi-harada-disease/ Vogt–Koyanagi–Harada
http://rarediseases.org/rare-diseases/osmed-heterozygous Weissenbacher–Zweymüller syndrome

Marfan analysis

I took a cursory look at Marfan relative to NORD citations. I found that: a) Wikipedia could do much better, b) the NORD-cited text generally checks out, but that c) a deeper dive into the underlying literature would help improve the article. Overall, I found nothing glaring about the NORD-cited text. SandyGeorgia (Talk) 16:54, 30 September 2020 (UTC)

Analysis of NORD at Marfan

https://rarediseases.org/rare-diseases/marfan-syndrome/ last updated 2017, the version cited

Marfan syndrome

Speaking of Mayo, the article cites a childrenshospital.

Diagnosis is often based on the Ghent criteria.[3][4]

NORD: The most recent published criteria (the revised Ghent nosology) were published in 2010.

NIH: Your doctor will diagnose Marfan syndrome based on your medical and family history, a physical exam, and test results. No single test can diagnose Marfan syndrome, so doctors use a set of guidelines called the Ghent criteria to help. [3]

Checks out with several recent secondary reviews, no problem.

Management often includes the use of beta blockers such as propranolol or atenolol or, if they are not tolerated, calcium channel blockers or ACE inhibitors.[4][5]

NORD: Beta-adrenergic receptor blocking drugs (β-blockers) such as propranalol or atenolol are often used in treating the cardiovascular problems associated with Marfan syndrome.

NORD: Researchers are studying a variety of drugs including calcium channel blockers (such as amlodipine or verapamil), or angiotensin converting enzyme inhibitors such as enalapril as potential alternative therapies for aortic enlargement in Marfan syndrome. One study in mouse models of Marfan syndrome showed that calcium channel blockers can accelerate aortic growth and increased the risk of aortic tear. While there was preliminary evidence of increased risk in people with Marfan syndrome taking calcium channel blockers, more research is necessary to address this issue and to determine the long-term safety and effectiveness other potential therapies.

Lindsay 2018, PMID 30036202 "Although many medical therapies target blood pressure (i.e., calcium channel blockers, angiotensin-converting enzyme-inhibitors, diuretics) there is little high quality clinical data to support their use beyond two better investigated medical treatments, betablockers and angiotensin II type 1 receptor blockers (ARBs)"

Cochrane 2017 [4] indicates our article could do MUCH better, but NORD is not wrong.

Looking at other reviews, NORD is conservative on newer studies, but checks out. Wikipedia could do much better, though.

Avoiding strenuous exercise is recommended for those with the condition.[4]

NORD: Individuals with Marfan syndrome are encouraged to avoid competitive and contact sports, heavy lifting and any exercise that increases the strain on the aorta produced by rapid or vigorous beating of the heart or increased blood pressure. Restriction of such activities can slow the rate of the widening of the aorta (aortic dilatation) and decrease the tendency for aortic tear (dissection). In general, moving types of exercises performed in moderation are thought to be good for people with Marfan syndrome. Such exercises, performed regularly, will naturally lower heart rate and blood pressure.

Wagner 2019 review, PMID 30926475

Jensen 2020 review, [5] Close enough, seems like NORD is erring on the side of caution, but within the range of accuracy.

About 1 in 5,000 to 1 in 10,000 people have MFS.[4][7]

NORD: Marfan syndrome affects males and females in equal numbers and occurs worldwide with no ethnic predisposition. The prevalence has been estimated to be 1 in 5-10,000 individuals in the general population. Because of the difficulty in diagnosing mild cases of Marfan syndrome, the disorder is probably underdiagnosed, making it difficult to determine its true frequency in the general population.

Stat Pearls: 1 in 3–5,000 [6] They cite to 2005 and 2006 data, ugh on StatPearls.

Pepe 2016, [7] 1 in 5,000, cited to 2010.

Close enough, NORD checks out.

Pleiotropy

Marfan syndrome (MFS) is an autosomal dominant disorder which affects 1 in 5–10,000 people.[36] MFS arises from a mutation in the FBN1 gene, which encodes for the glycoprotein fibrillin-1, a major constituent of extracellular microfibrils which form connective tissues.[36] Over 1,000 different mutations in FBN1 have been found to result in abnormal function of fibrillin, which consequently relates to connective tissues elongating progressively and weakening. Because these fibers are found in tissues throughout the body, mutations in this gene can have a widespread effect on certain systems, including the skeletal, cardiovascular, and nervous system, as well as the eyes and lungs.[36] Without medical intervention, prognosis of Marfan syndrome can range from moderate to life-threatening, with 90% of known causes of death in diagnosed patients relating to cardiovascular complications and congestive cardiac failure. Other characteristics of MFS include an increased arm span and decreased upper to lower body ratio.[36]

Wagner 2019 review, PMID 30926475, the 1,000 FBN1 mutations reported as of 2007 ... that should be mentioned.

Wagner 2019 review, PMID 30926475 mentions mortality, cardiac leading cause, cites very old data and this study.

NORD does NOT state anything about 90% of deaths, so this is a Wikipedia problem, not a NORD problem.

Corn allergies are no longer a "rarity"

The significant increase in corn allergies may never have been revealed without Facebook, which provides a platform for addressing specific and non-specific IgE-mediated allergies through allergy support groups; e.g., these allergy support groups have revealed that, based on membership, corn allergies are more than twice as prevalent as sesame seed allergies.

In addition, since corn is exempt from labeling requirements on food and drugs (w/the exception of Lactated Ringer's w/dextrose IV fluids), allergic reactions are currently not attributed to an allergy to corn, but are categorized as idiopathic.

Many of the 12K+ members in online corn allergy support groups have testified that some allergists actually refused to test them for a suspected allergy to corn, indicating that "corn is hypoallergenic" or "there is no such thing as an allergy to corn." Their corn allergies were confirmed after seeking a second opinion.

Another source to document the increase in corn allergies would be compounding pharmacies. Many of the 12K+ members in our corn allergy support groups require their medications be compounded to exclude corn-derived excipients. I believe this documentation could be obtained from the FDA, since they are responsible for auditing compounding pharmacies.

My state FDA representative encouraged me to calculate corn allergy statistics based on membership in one corn allergy support group representing a "sample population" (the same method used in conducting allergy studies). I have been calculating monthly corn allergy statistics since March, 2016 (341.7% increase). As of August, 2020, there has been a 957.5% increase in corn allergies.

I acquired an allergy to corn in July, 2008; however, I wasn't diagnosed until December, 2011. This is due to the fact that since corn is ubiquitous and is exempt from FDA labeling requirements, food journals will never reveal an allergy to corn. I suffered daily with this allergy for 3 1/2 years before receiving a definitive diagnosis. So this raises another concern; e.g., how many other people are experiencing allergic reactions to corn; however, they cannot identify the source of their reactions due to the lack of labeling requirements?

Special-interest influence can also suppress corn allergy statistics. The majority of the national allergy associations claim that corn allergies are rare (even though I forward corn allergy statistics/documentation to these organizations monthly). If they receive funding from the corn/grain industries, this could influence the narrative addressing corn allergies. Why is it that some allergists refuse to test a patient for a suspected allergy to corn requiring a second opinion?

Some allergists don’t include corn on their standard panel of testing; e.g., my own allergist didn’t test me for a corn allergy in March, 2011. It was only after conducting a rigid food elimination diet, that I finally suspected an allergy to corn (I had a severe allergic reaction to iodized salt, which was confirmed by Morton’s to contain dextrose). My allergy to corn was finally confirmed in December, 2011.

Published corn allergy studies reveal that corn is a major allergen:

"Maize is a cause of IgE-mediated allergic reactions to foods in adults and children. Nearly half of the subjects recruited were confirmed by challenge to be allergic to maize. Twenty-three percent of the positive challenge patients manifested symptoms that involved two organ systems, thus fulfilling the criteria for maize induced anaphylaxis. Maize is allergenic and can pose a risk for symptomatic food allergy at a dose of 100 mg." [8]

"Zea m 14, a lipid transfer protein, has also been isolated from Maize flour. Skin reactivity and IgE antibodies to this allergen were detected in 19 of 22 patients (86%) with systemic symptoms following the ingestion of Maize, confirming this as the Maize major allergen . . .

IgE-mediated reactions Maize may moderately often sensitise or induce symptoms of food allergy in sensitised individuals (7,15,31,34-37). Allergic symptoms reported have included abdominal pain, nausea, vomiting, rhinitis, asthma, angioedema, atopic dermatitis, and anaphylaxis.

Maize has been implicated as one of the causative foods of eosinophilic esophagitis, a disorder with symptoms suggestive of gastroesophageal reflux disease but unresponsive to conventional reflux therapies (58)." [9]

“Double-blind, placebo-controlled corn challenge resulting in anaphylaxis” [10]

“Maize pollen is an important allergen in occupationally exposed workers” [11]

“Corn Maize Gluten Causes Antibody Response in Celiac Patients,” [12]

"IgE-mediated allergy to corn: a 50 kDa protein, belonging to the Reduced Soluble Proteins, is a major allergen." [13]

"Maize food allergy: lipid-transfer proteins, endochitinases, and alpha-zein precursor are relevant maize allergens in double-blind placebo-controlled maize-challenge-positive patients." [14]

““The cohort of 817 children was composed of 35% AA, 12% Hispanic, and 53% non-Hispanic Whites. Compared with non-Hispanic White children, AA children had significantly higher rates of having asthma and eczema, and significantly higher rates of allergy to wheat, soy, corn, fish and shellfish. Hispanic children had significantly higher rates of allergy to corn, fish and shellfish, and higher rates of having eczema, but similar rate of asthma.” [15]

"Furthermore, corn allergy, rice allergy and peanut allergy were 1.02, 0.87 and 0.73 %, respectively." [16]

". . . cornstarch can act as an ingestant allergen, rather to the surprise of the investigating physicians." [17]DextroseIsCornSugar (talk) 00:16, 25 September 2020 (UTC)

Wikipedia is an encyclopedia. We do not add information sourced to Facebook. Natureium (talk) 00:25, 25 September 2020 (UTC)

Food allergy rates vary significantly between countries/food systems. The corn–rice–peanut comparison is the percentage of adults already being treated for allergies in Pakistan. There are no good worldwide numbers for most food allergens. WhatamIdoing (talk) 01:25, 25 September 2020 (UTC)

This editor has been blocked for being a single purpose account. --Tom (LT) (talk) 03:59, 27 September 2020 (UTC)

Technically, being an SPA is not a block-able offence. The editor was blocked for WP:NOTHERE. --- C&C (Coffeeandcrumbs) 03:54, 3 October 2020 (UTC)

RfC around transmission of COVID-19

publicising this RfC

Does current consensus reflect the following sentences as a summary of how COVID-19 is transmitted in the lead of COVID-19 and COVID-19 pandemic articles? --Investigatory (talk) 05:58, 5 October 2020 (UTC)