Category talk:People with ME, CFS, and/or FMS

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

I think a separate category needs to be made for historical figures who had illnesses that we surmise may have been ME/CFS. It's possible they had other illnesses but the tests and criteria for such illnesses didn't exist yet. An excellent example of this possible misdiagnosing is with Charles Darwin, where on his bio page other differential diagnoses are listed.

I can't think of a succinct phase, but something along the lines of:

People with ME, CFS, and/or FMS (unconfirmed)

Kmdenmark (talk) 10:56, 24 May 2018 (PDT)

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How about: "People probably with ME, CFS, and/or FMS"? I can't think of anything shorter. "purportedly" leans towards no. But either way having the category is a YES, we can always tweak the name later. Ollie (talk) 05:56, 25 May 2018 (PDT)

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The more I think about it, I like using "unconfirmed." "Unconfirmed' is a term used in medical diagnosis, so it sounds professional. If a patient comes in with chest pain, and the doctor wants to rule out heart attack, the primary diagnosis is "chest pain" and the secondary diagnosis is "myocardial infarction (unconfirmed)" until the tests come back. In the US, one can even bill for a unconfirmed diagnosis. I'm leaning towards either:

People with ME, CFS, and/or FMS (unconfirmed)
People with ME, CFS, and/or FMS (unconfirmed diagnosis)

Kmdenmark (talk) 06:53, 25 May 2018 (PDT)

Split please[edit source | reply | new]

Can we please split this category into smaller, homogenous groups? I am not someone with 'ME, CFS, and/or FMS'. That would suggests my diagnosis is unknown. It is though, I am someone with ME. Thanks, Guido den Broeder (talk) 20:33, September 2, 2019 (EDT)

I think the earlier suggestion of a historical figures page is useful, perhaps People who may have had ME, CFS, and/or FMS or Historical figures who may have had ME, CFS, and/or FMS or even Famous people with ME, CFS, and/or FMS. For people living in the present, if they are not public figures, there should be enough info to know if they have ME or CFS, or Fibromyalgia or both. I don't think ME and CFS should be split due to the uncertainty and disagreements on this. A lot of people do have both of course. notjusttired (talk) 16:45, September 4, 2019 (EDT)
If you have been diagnosed with ME or fibromyalgia, CFS no longer applies, since that is for unexplained complaints. It is possible to suffer from both ME and fibromyalgia. If that is the case, people can have both categories. Please stop reverting. Guido den Broeder (talk) 19:01, September 4, 2019 (EDT)
There are ME patients with other comorbidities as well, such as cancer, EDS and Lyme. It makes little sense to group only 3 diagnoses, there should simply be a supercategory 'Patients' instead. Historical figures whose diagnosis is unknown can be placed directly into that category. Guido den Broeder (talk) 19:55, September 4, 2019 (EDT)
Fibromyalgia is a common comorbidity of ME and CFS, and unlike ME and CFS it is not a neurological disease. Someone with Fibromyalgia may have ME, or CFS, or neither. ME and CFS are not exclusionary terms under most diagnostic criteria, and the World Health Organization continues to use them interchangeably which adds confusion. Around 10% of ME patients do not meet CFS criteria due to prominent pain and neuromuscular symptoms but absence of significant fatigue. All these are concerns we need to discuss. While this is a ME and CFS encyclopedia, many visitors are also seeking information on fibromyalgia.
See the section below for my comments on sorting. If your changes have previously been reverted then do not make them again until things can be discussed and agreed on. notjusttired (talk) 12:28, September 5, 2019 (EDT)
Then perhaps you should respond to my comments instead of just repeating that it should be discussed. I am discussing it. Guido den Broeder (talk) 12:37, September 5, 2019 (EDT)

User:Kmdenmark User:Pyrrhus User:JaimeS Let's talk here. notjusttired (talk) 18:27, September 4, 2019 (EDT)

notjusttired Pyrrhus JaimeS Guido den Broeder JenB Canele Hip - What if we just use the generic category "People"? I'm not in favor of 'Patients' bec (at least, in the US) advocacy of chronic illnesses supports the term 'people with [fill in illness].' Also, I have been contacted by a person who wants the 'Category:People with ME, CFS, and/or FMS' removed from her bio because she feels it is private medical info. To the best of my knowledge, we have never "outed" anyone. All references to someone having ME or ME/CFS come from their own public statements. However, I do understand that someone may not want their medical info to be available on a broader platform. Kmdenmark (talk) 13:40, September 5, 2019 (EDT)
I prefer "people" to patients. I think the category is there for people to look up either famous people who have / night have ME, CFS or Fibromyalgia, or to identify well known patients who have done media work. Perhaps it is best to have a category for ME or CFS advocates plus a Famous people with ME, or CFS or Fibromyalgia one to include both historical figures, public figures and well known patients who have done media interviews or been featured a lot in the press eg Sophia Mirza? I am not totally sure how important it is to keep Fibromyalgia in a category name - I don't think there will be many with Fibromyalgia that don't have ME or CFS. Whatever we decide on I think a redirect should be left in place after, for anyone who has previously bookmarked the link to the old category. notjusttired (talk) 17:53, September 5, 2019 (EDT)
We already have a top category People. You can change Patients to People with a diagnosis if you must, or leave that supercategory out entirely, but that's not the issue here. The issue is that you should not conflate ME, CFS and FMS. That is wrong and stigmatizing. You have now made several posts in this section without discussing the issue that I raised. That's very rude. Guido den Broeder (talk) 19:26, September 5, 2019 (EDT)
Using Category:People sounds great to me! Thanks for proposing that, User:Kmdenmark! Honestly, I don’t understand how one could possibly think that the current category name conflates, confuses, or equates “ME” with “CFS”. The name of the category is simply a comma-separated list of three terms. That’s it. The category could be called “People with apples, oranges, and/or bananas”, but no one in their right mind could then claim that we were conflating, confusing, or equating apples with oranges. It’s just a comma-separated list of three terms, it’s not a diagnostic code or a judgment on any diagnostic criteria. It’s just a simple comma-separated list of three terms used to group together pages in the interest of convenience. That’s it. MEpedia has already gone to great lengths to avoid conflating “ME” and “CFS”.
Pyrrhus (talk) 21:09, September 5, 2019 (EDT)
You must be kidding. MEpedia conflates ME, CFS and also SEID everywhere. You have so many things fundamentally wrong. I can't do anything about that since I have ME and other editors who would oppose my efforts are clearly able to make more hours. But I don't want to see myself in a category that gives a wrong impression of me, and I know many other ME patients that feel the same way. It costs you absolutely nothing to make a change to the category tree. So show some respect. Guido den Broeder (talk) 21:28, September 5, 2019 (EDT)
I apologize if I seemed disrespectful, I honestly meant no disrespect whatsoever. I was merely sharing my honest assessment. I understand that you don’t want to see yourself in the category with its current name. Would you mind if the category was changed to Category:People?
Best regards, Pyrrhus (talk) 21:45, September 5, 2019 (EDT)
User:Guido den Broeder if you can clarify what I have not responded to then I will respond. You have not responded to my questions about how to deal with people who we don't know which to put in which category or to the point I raised about many people fitting both ME and CFS. I have not had feedback from people here about the issues with historical figures / famous people.
My concern with dividing ME and CFS is not knowing which category to put some people in, if we choose for them we might well get it wrong. Where does Florence Nightgale go, for instance? If we have a subcategory for ME, one for CFS, one for fibromyalgia AND keep the combined category, would that make it clearer without misleading people into thinking someone has all 3 diagnose those we don't have much info on would be in ME, CFS or FM only. Editing collaboratively means working in an agreed way, which sometimes means editing / writing it in a different way to campaigning / advocacy. We need a way forward for this particular category that is acceptable to all, and that is accurate. Issues with SEID, Fibromyalgia or ME vs CFS elsewhere should be taken up with User:JaimeS. notjusttired (talk) 17:49, September 6, 2019 (EDT)
If you don't know, then categorizing them as 'ME, CFS or FMS' is already wrong, and the question is why these people are included here at all. Florence Nightingale certainly doesn't belong there, she had a different disease altogether. Fitting both ME and CFS is not possible as these diagnoses exclude each other, I've already explained this above. Historical people can't be categorized as CFS anyway because CFS didn't exist until the late 1980s. I don't know a JaimeS. However, this is not Wikipedia where a majority of ignorant editors get their way and the input of experts is discarded. Guido den Broeder (talk) 18:10, September 6, 2019 (EDT)

Default sort[edit source | reply | new]

Is there now an agreement to sort categories with people by forename rather than surname first? I am not aware of it this has been agreed. If it is not agreed then I am against this. If is a universal standard to sort by surname, and if this category is changed then surely all people categories should be - including Researchers, Clinicians, American Researchers, Norwegian clinicians etc. If it is agreed then I believe it would be possible to use a tool to bulk change the relevant pages or simply edit something on each category page to change the display order. notjusttired (talk) 18:27, September 4, 2019 (EDT)

Without defaultsort all people are automatically sorted by first name. You reverted me without discussion. What gives? Guido den Broeder (talk) 18:53, September 4, 2019 (EDT)
I reverted the changes because they hadn't been discussed, and will affect many posts here. Plus if we go forward with sorting then it should be possible to change all pages at once - if some have already been done this won't be possible. It may also be possible to find a magic word or feature that only needs adding to the category and not to each page to do the sorting. Any sorting that does need adding to individual pages would need adding to the article outlines too. I am not sure why sorting was added if they are already sorted that way? notjusttired (talk) 12:35, September 5, 2019 (EDT)
This can't be done by a bot because there are different rules to each name. Also, no discussion is needed. Sorting by surname is the norm. That's why it's called defaultsort. Guido den Broeder (talk) 12:41, September 5, 2019 (EDT)
I didn't have a bot in mind, adding a custom template (or code) that uses {{PAGENAME}} and splits it into first and last name would allow the same change on all pages. And it's a lot of pages to do. Otherwise we end up with a mix of sorting by first name and by surname until all pages are done. [defaultsort https://www.mediawiki.org/wiki/Help:Magic_words/en] lets you sort by anything you like, for example just the first letter of a surname or some information not in the name. When it's left out, like it has been up to now, it sorts alphabetically by page name meaning first name then any middle name, then surname in MEpedia.
A few names have 3 words and I am not sure if the second word is a middle name or part of a surname - Asian names, but possibly some Spanish ones too. What is your view on whether researcher and other name categories should be sorted by surname first? notjusttired (talk) 18:20, September 5, 2019 (EDT)
You don't have to create a template or anything. Defaultsort was created for this task. English has rules on how to sort names and we should simply follow those. You don't need to reinvent the wheel. It could all have been completed already had you not started reverting my edits. Guido den Broeder (talk) 19:33, September 5, 2019 (EDT)
Can you answer my questions about what we do over people with 3 names, and whether you want this to apply to all researchers, clinicians and patients or just patients / people? I just looked - roughly 150 patients, over 200 clinicians, over 200 researchers. notjusttired (talk) 17:49, September 6, 2019 (EDT)
Already answered. We follow the English-language rules for sorting names. Which means all people, and also that there is not a simple single sorting rule that applies in all cases. If you don't know these language rules, then it's best to leave it to editors that do. Guido den Broeder (talk) 18:16, September 6, 2019 (EDT)