Talk:Multiple chemical sensitivity

Scientific sources
Some sources don't meet the MEpedia:Science guidelines, which have been updated quite recently. Sources that are blogs, websites belonging to an individual or a small group, or patients have been used as sources (or in Learn more) in some places without making it clear whose view these are. Verywellhealth for instance is simply a patient/health website without medical oversight. ~Njt (talk) 13:43, May 13, 2020 (EDT)

Popular culture
This isn't a section we normally cover (see MEpedia:Article_outlines and I would like it remove it. This page is already very long. The popular culture pages here are only for NE/CFS, so if there is something notable covering ME/CFS and MCS it could have a separate page in the culture category. User:Aletheia2020 User:Kmdenmark User:Pyrrhus User:JaimeS I think the should also be less weight given to skeptics, Wikipedia and blogs in the controversy section. Wikipedia often includes excessive skeptical sources and excessive weight is given to them, but here we are mostly concerned with MCS as it relates to ME/CFS and possibly fibromyalgia or other comorbidities. Surely there should be some peer-reviewed research relating to the controversy? Articles on myths or misconceptions could be useful here, and in the Learn more section. ~Njt (talk) 13:43, May 13, 2020 (EDT)

Missing reference #19 -- Pyrrhus (talk) 23:52, February 9, 2020 (EST)
User:Aletheia2020 Thanks for your great work on this page! There is one reference missing though, currently numbered #19. Please double-check. Thanks again. Pyrrhus (talk) 23:52, February 9, 2020 (EST)


 * User:Pyrrhus Thank you, and sorry about that reference. For some reason, a few disappeared. It will take me a bit of time to work out which ones went missing when I cut and pasted. I'll try to fix it in the coming days Aletheia2020 (talk)

First section on chemical sensitivities in ME/CFS
Hey, I wasn't sure who edited this section, but I envisaged this page as one about MCS as a standalone condition--a condition which is commonly comorbid with ME/CFS. I didn't want it to be chemical sensitivities or MCS in ME/CFS, since the content that follows that section isn't that.

I was going to change it back, but if you don't agree, happy to chat about it.Aletheia2020 (talk) 03:17, February 12, 2020 (EST)Aletheia2020


 * I'm afraid I don't understand what exactly you are referring to. Could you clarify?  Generally speaking, pages on MEpedia should state at the outset what the relevance to ME/CFS is.  This section is usually titled "Such-and-such in ME/CFS".  The point of the section is to explain why this topic is RELEVANT to ME, to avoid having the page deleted for falling outside the scope of MEpedia.  The merits of considering a particular condition as a COMORBIDITY are typically covered in a separate section.  I hope this helps.
 * Pyrrhus (talk) 20:51, February 10, 2020 (EST)


 * Hey User:Pyrrhus thank you for the extra details. I understand.


 * My concerns is that medication, food and odour sensitivities are not MCS and the way that the paragraph is now phrased makes it a little confusing on a page about MCS--especially when it's the first section after the intro.


 * MCS has specific diagnostic criteria, and, yes, it often is accompanied by medication, food and odour sensitivities, but not always. And the MCS community has some good reasons to distinguish between odour and chemical sensitivities because different studies and conclusions apply to these two phenomenon.


 * If you'd rather leave the title like that because its your convention, no worries. I think that works OK.


 * But I think that taking the paragraph back to what I had would make it clearer about what MCS is. Food sensitivities etc are really for a whole nother page.


 * Also, I spelled out ME/CFS here since it's the first time it's mentioned on the page and people may come to this page from Googling MCS and not know what ME/CFS is. I also thought it important to specify that the consensus documents were about ME/CFS since it's not clear otherwise what they are consenses about.


 * What do you think?Aletheia2020 (talk) 03:17, February 12, 2020 (EST)Aletheia2020


 * You make some very good points User:Aletheia2020. Give me a little time to incorporate your points into a draft section, which I will post here on the discussion page for you to review and edit.  Thanks.
 * Pyrrhus (talk) 13:41, February 12, 2020 (EST)


 * Okay, Aletheia2020, how does the following section look?
 * Pyrrhus (talk) 20:59, February 12, 2020 (EST)


 * Thanks for doing that Pyrrhus. Looks good. I think that that is very clear. Whether that level of detail is required above what was there before, I don't know. But I found it interesting to read the details.


 * The only thing I didn't agree with was the last bit, saying some studies differentiate odour and chemical sensitivities. I think it's a very important to make clear that MCS is not odour sensitivity. I think this is a common misconception.


 * If you look at the 1999 criteria for MCS (and proposed changes to that in the 2019 consensus) there is nothing about sensitivities to odours mentioned in the diagnostic criteria.


 * Some triggering chemicals have odours and some people with MCS have exaggerated senses of smell, but many triggering chemicals (eg. many pesticides) don't have a perceptible smell and many people with MCS have normal senses of smell, and some have no sense of smell at all (which makes avoiding triggers pretty tricky).


 * In my experience, studies into odour sensitivity are often more focused on a perceived nocebo/psychosomatic angle, and in relation to MCS, these have been used in attempts to discredit MCS as a physical disorder. So I'd rather keep my distance from them.


 * From what I can tell, the Quackwatch/SBM mob like to characterise MCS as something like: a bunch of hysterical women getting anxious, angry and upset when they smell perfume or petrol, in some kind of paranoid fit of chemophobia.


 * But this characterisation doesn't explain MCS when the triggering chemical has no smell or when the reaction is from topical contact, ingestion or injection (eg. in the case of anaesthetics, which are notorious for making people with MCS ill).


 * Anyway, in summary, I'd just cut the final sentence. I think the rest of the contact makes it clear MCS is not sensitivity to odours. Aletheia2020 (talk) 01:29, February 14, 2020 (EST)Aletheia2020


 * Thanks for all the background, Aletheia2020. I have learned a lot about MCS in this conversation.  I think many people in the ME community, including those with MCS, are unaware that MCS has specific diagnostic criteria.  So your work on this page helps a lot.  I'll go ahead and cut the final sentence and then copy it over.  Thanks again.
 * Pyrrhus (talk) 21:17, February 14, 2020 (EST)


 * It's really good to read that feedback : Pyrrhus -- thank you. I think the "is MCS real?" conversation has really eclipsed conversations about what the condition actually is. And that hasn't helped sufferers. Hopefully this page is of use to other people with chemical sensitivities or MCS.


 * Also, thank you also for your patience with me as I've been learning how things work on here.````Aletheia2020

MCS in ME and ME/CFS
MCS has been described as a comorbidity of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia. The Canadian Consensus Criteria for diagnosing ME/CFS lists "new sensitivities to food, medications and/or chemicals" as a symptom and lists "Multiple Chemical Sensitivities (MCS)" as a comorbidity. The International Consensus Criteria for diagnosing myalgic encephalomyelitis (ME) lists "sensitivities to food, medications, odours or chemicals" as a symptom and lists "multiple chemical sensitivities" as a comorbidity. A 2019 publication of the U.S. ME/CFS Clinician Coalition lists "chemical sensitivity" as a symptom of ME/CFS and lists "Multiple Chemical Sensitivities" as a commonly comorbid condition.

However, it is important to note that MCS has specific diagnostic criteria which do not include medication, food or odor sensitivities. Furthermore, some studies have differentiated odor sensitivity and chemical sensitivity as two separate phenomena.

On This is a Potential comorbidities page
I wondered how we can resolve whether it is or isn't a comorbidity. I know the US Coalition on ME/CFS consensus from last year said it was, but I'm really not up on other ME/CFS stuff.

I think removing the banner would look better if it can be agreed either way.

Thanks Aletheia2020 (talk)


 * A page is expected to objectively weigh the evidence for and against considering a condition as a comorbidity. As much as possible, we leave it up to the reader to draw their own conclusions.  Because of this, we recently renamed our "Comorbidities" category to "Potential comorbidities", in order to let the page itself weigh the evidence, and in order to let the reader come to their own conclusion.


 * User:Pyrrhus OK, got it. Thanks Aletheia2020 (talk) 03:26, February 12, 2020 (EST)Aletheia2020


 * These sorts of debates just don't belong in category-naming decisions. Categories are simply a convenient way to group articles, nothing more, and we don't want to complicate things by politicizing category names.  We did the same thing with the "Treatments" category, which is now called "Potential treatments".  With that said, the banner is indeed ugly and distracting.  We have developed a better banner and are (still) waiting for our technical people to finally implement the better banner.  For the time being, we just have to put up with the current ugly and distracting banner...


 * User:Pyrrhus OK. That's good to know. Yes, it's very dominating as it is atm. Aletheia2020 (talk) 03:26, February 12, 2020 (EST)Aletheia2020


 * Hope this helps. Please let me know if you have any further questions.
 * Pyrrhus (talk) 21:07, February 10, 2020 (EST)


 * Oops, User:Aletheia2020, I forgot to mention that the word "comorbidity" on MEpedia has a specific meaning: it means a condition that is statistically more likely to be found in the original condition, than it is to be found in the general population. I only mention that since there are other definitions out there...
 * Pyrrhus (talk) 21:28, February 10, 2020 (EST)


 * User:Pyrrhus OK, noted. I'll stick with your definition. Aletheia2020 (talk) 03:26, February 12, 2020 (EST)Aletheia2020

English or American spelling?
User:Pyrrhus I noticed that you changed some ss to zs in words but changed centers to centres. So I was unsure if you went with American or English spelling on this page? Thanks Aletheia2020 (talk) 03:44, February 12, 2020 (EST)Aletheia2020


 * The MEpedia:Manual of style specifies American spelling and dates, which I why I changed some spelling, including changing "centres" to "centers". Then I realized that the word "centres" was part of a quote from a Canadian, so I changed "centers" back to "centres".  I hope this clarifies things.  Good catch!
 * Pyrrhus (talk) 13:48, February 12, 2020 (EST)


 * Ah, I got it pyrrhus. No worries.Aletheia2020 (talk) 01:29, February 14, 2020 (EST)Aletheia2020

Questionable comparison that could be interpreted as bias
Aletheia2020, I notice that you make a comparison between "merchants of doubt", who are paid to disseminate disinformation that they don't themselves believe, and intolerant skeptics, who may use similar tactics but are unpaid and actually believe what they are claiming. Some may say that this is an unfair comparison that displays bias on our part. Perhaps rephrase? Pyrrhus (talk) 14:34, February 12, 2020 (EST)

Re: Questionable comparison that could be interpreted as bias -- Aletheia2020 (talk) 21:47, February 12, 2020 (EST)

 * I hear you, and they are good points. But I used the comparison (and think it's important) because Barrett, Gots and Quackwatch have been documented to receive corporate funding.


 * As well, I don't think "controversy" as the heading for the section originally labelled "politics" is accurate.


 * In my view, the idea that there is a controversy has been manufactured, and I don't want to give it any more oxygen by using a heading that reinforces the idea that there is a heated academic debate going on about MCS being real or not when there isn't.


 * In the case of MCS, the views of SBM and Quackwatch are fringe. I also don't consider them genuine skeptics. I know the president of the national association of skeptics, and he thinks SBM is very little to do with skeptic philosophy and a lot to do with pursuing an already-decided agenda. So it's an ideology, not a method for critical thinking.


 * No academic review on MCS studies that I've seen has concluded the condition is fake or bogus. Certainly this isn't the conclusion of at least the past five large-scale reviews.


 * I called this section politics, to show that there are powerful interests involved, which have influenced the debate and are continuing to influence it (just as we have seen with tobacco, DDT, asbestos and now climate change).


 * The most recent large-scale academic review of MCS studies in 2019 (the Italian consensus) even said that the few studies claiming a psychological cause all had clear conflicts of interest and could not be considered reliable on that basis alone (in addition to the methological criticisms levelled at those studies).Aletheia2020 (talk) 21:47, February 12, 2020 (EST)Aletheia2020


 * Thanks for sharing some of the backstory here. What you describe is perfectly familiar to the ME community.  We also have powerful interests who prominently claim that ME is a fake disease, receive funding from insurance companies to give speeches to doctor conventions "informing" them that ME is a fake disease, are paid by the insurance companies to testify at disability pension hearings to deny disability payments to ME patients, who then have no choice but to commit suicide.


 * These powerful interests have even gone so far as to set up their own academic journals to publish their "peer-reviewed" work, and have set up their own media organization to plant stories in various newspapers claiming that bedridden ME patients are plotting to assassinate innocent scientists. (not a joke)


 * Yes, it's immensely frustrating that, in these days, anyone can manufacture a controversy simply by stating that a controversy exists. If we were a public relations organization, we would gladly ignore all manufactured controversies.  But we're an encyclopedia, and we have a duty to objectively report on all controversy, regardless of the controversy's merit (or lack thereof).


 * MEpedia's editorial guidelines (see MEpedia:POV) state that section headings describing controversies can be titled "Controversy" or "Criticism". I chose the word "Controversy" because "Criticism" implies legitimate criticism, but the word "Controversy" does not.


 * And I don't think you have to worry about readers equating skepticism with critical thinking. The common use of the word "skeptic" is just someone who doubts something.  (like a "climate skeptic" who doubts climate change)  But if you fear readers may use a more nuanced definition of "skeptic", you can just refer to them as "critics" or "bloggers" instead of as "skeptics".


 * Hope this helps. Pyrrhus (talk) 13:28, February 13, 2020 (EST)


 * pyrrhus OK. I understand. Thanks. And, yes, you're probably right that most people don't know much about the divisions in skeptic movements.Aletheia2020 (talk) 01:29, February 14, 2020 (EST)Aletheia2020