Talk:Multiple chemical sensitivity

Biological/ Physiological or Psychological or Both

Is this sentence from Possible causes correct and up to date? Are there better references for this? I thought much of the research was moving towards biological / physiological with any psychological factors being secondary. User talk:Aletheia2020 ~Njt (talk) 03:18, January 8, 2022 (UTC)

These recent statements suggest that earlier depictions of MCS as being either biologically or psychologically caused likely set up a false dichotomy or dilemma.

Formatting problem with references -- Aletheia2020 (talk) 03:04, June 4, 2020 (EDT)

There seems to be a problem with some references disappearing. They remain as numbers without the reference. This seemed to start after the insertion of "see also"s, although I don't know if it's related.

Does anyone know how to fix? Thanks [User talk:Aletheia2020|talk]])

I have only just seen this. Which references are affected? If the text looks OK but the references list has entries like: 20. ^ then click on the up arrow symbol and it should show you whwre it comes from. The source editor view can then be used to see what the issue is. ~Njt (talk) 12:57, June 30, 2020 (EDT)

Fixed some time ago I think. ~Njt (talk) 03:18, January 8, 2022 (UTC)

Images -- Aletheia2020 (talk) 21:16, May 16, 2020 (EDT)

Could anyone please direct me to where I can read about policies relating to image use.

Also, I uploaded three images and they didn't seem to be well formatted on the mobile app, with the image apearing in the middle of sentences. I tried to fix, but unless my mobile is showing the old version, I'm not sure how to fix it, if anyone can help. Aletheia2020 (talk) 21:16, May 16, 2020 (EDT)Aletheia2020

It looks like I missed answering this before. MEpedia:Copyright policy says which image rights are needed for reuse on MEpedia, Help:Images and Help:Files have further info including where to find some. Google's images search allows you to do an advanced search for "images for reuse", then you just need to double check on the page which license they are under. Photos and original computer graphics you made can be uploaded too. ~Njt (talk) 22:31, September 27, 2021 (UTC)

Electrohypersensitivity

Does this belong as part of the page, or is it better on a separate page? Are there specific types or subtypes of MCS to cover? If EHS goes on this page this this image and reference look worth adding. Skin lesions on a patient with electrohypersensitivity (EHS).

Skin lesson caused by electrohypersensitivity. Source: 2020, Belpomme and & Irigaray. Int. J. Mol. Sci. 2020, 21(6), 1915.

• 2020, Belpomme, Dominique; and Irigaray, Philippe. Electrohypersensitivity as a Newly Identified and Characterized Neurologic Pathological Disorder: How to Diagnose, Treat, and Prevent It. Int. J. Mol. Sci. 2020, 21(6), 1915. - (Full text)

Could MCS be broken down into Electrohypersensitivity, Food/drink allergies and intolerances, and chemical/environmental allergies and sensitivities? The MCSAware website (for instance) seemed to concentrate on those areas. ~Njt (talk) 20:43, May 14, 2020 (EDT)

Re: Electrohypersensitivity -- Aletheia2020 (talk) 02:56, June 4, 2020 (EDT)

Thanks for raising this. It's important. EHS is included under the umbrella term Idiopathic Environmental Intolerances, but most of the researchers into MCS don't like this term, since it has certain political associations. I think the consensus would say that EHS is a commonly comorbid condition to MCS and ME/CFS. I think it needs its own page.

Likewise, food/drink allergies and intolerances are not MCS, which has a specific diagnostic criteria. Even though, many people with MCS do have food intolerances as well.[User talk:Aletheia2020|talk]])

Re: Electrohypersensitivity -- Silliestchris (talk) 05:29, September 23, 2021 (UTC)

Hi, anectodally I have observed that EHS and MCS seem to be comorbid for some people. The Belpomme article really drives this home, as well. I think a statement should be made on the possible relationship, but EHS should have its own distinct page.

There is now a basic stub page for Electrohypersensitivity. There are also pages aimed at ME/CFS for:

• New allergies and intolerances
• Chemical sensitivities
• Food sensitivities
• Medicine sensitivities
• Odor sensitivities

plus a number of other pages in Category:Sensitivities. Info from MCS could be added under a subheading there.

The allergy page is a stub.

 ~Njt (talk) 22:31, September 27, 2021 (UTC)

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)

Re: Scientific sources -- JaimeS (talk) 13:24, May 15, 2020 (EDT)

Surprisingly, not a lot of scholarly articles on the controvery itself except in miniature: like, controversy of mast cells' role in neuroendocrinology.

I'm looking into this now. Will add a list here. ~Njt (talk) 13:51, May 15, 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)

Re: Popular culture -- Aletheia2020 (talk) 02:55, May 14, 2020 (EDT)

Hey User:Notjusttired Thanks very much for taking the time to review the page and for your thoughts. I'm new to MEpedia so will rely on the adivce of more established users but this was my rationale.

I'll go through your points one by one.

CC: User:Pyrrhus User:JaimeS

Long, dense page: I kept it all on one page primarily for SEO purposes, and following the Wikipedia model.

Popular culture: (taken from Wikipedia format) In the review of Safe, I tried to give a psychosocial perspective on how MCS is widely perceived and how this impacts the lives of sufferers. From my perspective, as an MCS sufferer, this is the more important section on the page because the scientific studies I don't think really describe how profound the social disslocation is that many people with MCS experience as a result of stigma.

Weight to skeptic argument: First, I do hear you on questioning my inclusion of this. I chose to cover it (what I see as the elephant in the room) because skeptics have dominated the Wikipedia page on MCS for many years. They delete anything there that contradicts their view and delete their accounts.

I hoped the summary of the controversy would give readers an intellectual and political context for Wikipedia's content--after all, Wikipedia has a big influence.

Also, because I'd read that Quackwatch and SBM invest a lot in their SEO, I thought that referring to many of their articles and using the language that they use to denigrate people with MCS may help the page's SEO. That hypothesis might have worked since the page has moved from page 30 to page 1 on a range of MCS search terms.

Re peer-reviewed research relating to this controversy, other than the consensus of last year (which said that the scientists arguing that MCS was psychologically-caused had conflicts of interest), I'm not aware of anything. It may be out there, but I've not seen it. Unfortunately, research into MCS has been limited.

General direction I wrote this page for MEpedia on the understanding that this would just be a page about MCS--one that wasn't subject to the censorship restrictions of Wikipedia.

While there is a section on how it relates to ME, that certainly wasn't my goal in investing my time in this. My goal was to create a reputable source that people with MCS could go to for resources and that they could direct others to (ie. loved ones, new friends, doctors, hospitals).

If MEpedia would prefer for the focus to be on how MCS relates to ME, I don't think I'd want to be involved with that. One, because I'm not an expert on that subject (I'm also not sure if much research has been done on that subject); and two, because I don't think it's what people with MCS need.

Sensitivities can be a symptom of ME, but MCS is a standalone condition, and I'd like it to get the space and spotlight it needs as a very serious standalone condition.

If MEpedia isn't the place for that, I understand. I also wish I'd known that before I'd given my content to MEpedia and invested a lot of time on the page. In light of that, I'd like to be able to take my content with me, if you decide to change the direction of the page significantly. I wrote all of it except for the section ME and MCS. It's the culmination of several years work for me, and I'd like to see it published somewhere.

Aletheia2020 (talk) 02:55, May 14, 2020 (EDT)Aletheia2020

Thanks for your reply User:Aletheia2020. I perhaps was a bit unclear about how it impacts ME - I think a stand alone page is incredibly useful, but any extra sources that cover it as a comorbidity of ME/CFS and/or fibromyalgia would be really useful. MCS is a huge complication for many with ME so the page is extremely useful. Similarly, the Fibromyalgia has ended up very long, there's a separate Fibromyalgia drugs page - would a Fibromyalgia treatments summary page be helpful? Anything that could be added to individual treatment pages about MCS would be helpful, just add a subheading for it (not sure what potions there are in terms of management / treatments).

I think if you have time, some of what is here would be useful on pages like Medically unexplained symptoms, and psychologization. As regards SEO, the MediaWiki software controls so much of that. Things I've noticed that are very useful are adding some images (quotes or other pictures), careful wording of the first 2 lines of the article, increasing the number of subheadings and having subheadings related to things that are commonly searched for since these then appear as short links in the search results. Perhaps the "popular culture" heading could be changed to something about what it's like to live with MCS? Regarding the "learn more" section - are there some leaflets for patients or Consensus guidelines and criteria that could go there? I've noticed the huge amount of work you are putting into the page, I can't think you enough for that. :-) I see so many online struggling with MCS and with few reliable places to go, and difficulties explaining things to others. ~Njt (talk) 06:58, May 14, 2020 (EDT)

Thanks for your note and suggestionstalk and User:JaimeS.

I took from your further comments that you're OK with leaving the page generally as is but that you wanted the popular culture section changed and more on how MCS impacts ME. Is that right? Or do you still think further sections should be cut, reduced or separated out onto other pages?

As for how MCS impacts ME, I agree it's an important subject, and it's actually not one I had thought much about until this conversation.

Myself I have both conditions, and I would say that out of the people I know with severe and longstanding MCS, the majority seem to also have ME.

From my perspective, the biggest complication MCS creates for a person who also has ME is access/disability issues, which can greatly compromise getting accommodation, support and medical care. Of course, these disability aspects of MCS create these complexities for the sufferer in relation to any comorbid medical condition, not just ME. It complicates them getting medical care for MCS symptoms.

Access issues is a section I've been meaning to write (and it's alluded to in hospital care). I've been procrastinating on it cos it's literally such a big subject, I'm still figuring out how to summarise it into a small section.

So, im summary, I agree that this subject is important. It's just not what I had in mind when I wrote this page page. And to me it seems a bit specific for this page.

I wrote this page with a general, unninformed target audience in mind, hence talking a little about a wide range of subjects, with the idea that the reader could come to the page with literally no idea what MCS is.

In contrast, how MCS impacts ME would be for an informed audience (ie. mostly likely people with both conditions or their loved ones or carers).

As for SEO, the reason I started paying more attention to that, is that when the page was first up (for the first month or so), it was coming up around page 30 on Google--really too deeply buried to make a difference for random searches. I consulted an SEO expert and he suggested incorporating certain words and questions into the content, where possible. Two weeks after I started doing that, I noticed the page coming up much higher in Google for certain subjects. And it seemed to come up higher still the more I did it. It wasn't the only SEO tactic I used, so I don't know for sure whether it was responsible for it coming up higher, but I think it might have been.

Like you talk the SEO consultant said that incorporating common googled phrases and questions in headings is the best, although I thought your page followed a similar template to Wikipedia in relation to headings, so didn't want to mess with them. It sounds like there is some flexibility there, though?

On images talk, thanks, that's good to know. They would be good to incorporate. Is there a place that MEpedia contributors commonly get stock images?

And User:JaimeS with the Safe review having non-scientific resources quoted, I assumed this was OK because a movie review is a movie review--ie. it's not making any controversial scientific claims (and obviously there are no scientific sources about movies). I still thought there was value in quoting media and academic sources about the film because it gives a glimpse into the director's intent and how it was widely interpreted.

I see that Safe has been shortened and some of that content moved to the Safe page. Wasn't sure if that related to the sources I'd used to you just wanting to shorten it.

But I wonder if you'd consider leaving it as is. I ask because the review was carefully written, dense with terms and phrases that I thought could potentially help SEO. It was easier to do that in this section because it had freer form that the scientific sections.

As well, I think the detail about Safe is important because it's not a straight-out narrative about someone having MCS.

The film is actually very vague about what's happening to Carol and why (even though it's a perfectly realistic depiction of what MCS looks like). This vagueness is probably why the film was interpreted in many diverse ways (eg. as a horror film, as a feminist film).

The summary as brief as it is now I don't think really conveys the nuance of how nuance of how the condition is presented. For example, I think it's an important detail to include that nowhere in the film does it mention MCS. It's just that Haynes has confirmed that this was the condition he wrote the film about. Haynes actually wrote the film as a metaphor for how patients with AIDS were treated. I didn't go into that cos it did seem like unnecessary detail for the MCS page, but, basically, Safe isn't a clear cut film about MCS.

Also, I thought because it is at the bottom of the page, I didn't think it would distract from other content by being a little detailed.

Finally re Mepedia policies, apologies if I haven't adhered to all of them and for the time it takes other editors to fix my mistakes User:JaimeS talk. I did read through them at the start, and probably didn't retain all I read. I'll go over them again. But my memory isn't great, so thanks for nudges about times that I've deviated from them. User:Aletheia2020

Hello all, I am just coming up to speed on the discussion and I am very impressed with what, mainly, User:Aletheia2020 has put together here. The MCS page has taken on a life of its own, and I think that Mepedia in general has grown into something far beyond what the founders originally envisioned. I actually found this page because I was appalled at the bias on wikipedia's MCS page. I used to donate to Wikipedia, but my donations will be going to Mepedia instead, now.

Re: Re: Popular culture -- Aletheia2020 (talk) 19:29, May 16, 2020 (EDT)

Replace this text with your reply

Re: Re: Popular culture -- Silliestchris (talk) 00:07, September 26, 2021 (UTC)

Replace this text with your reply

Re: Popular culture -- JaimeS (talk) 13:13, May 15, 2020 (EDT)

I agree that the section that exists now is a little over-sourced and could be edited down. Re: censorship, I know that Wikipedia has a really frustrating and demeaning history of falling on the side of reactionary skepticism/mockery of people with chronic conditions. MEpedia is moderated by a patient advocacy organization, not would not seek stifle the voice of people with chronic conditions.

I think you and I have had conversations on this, Aletheia2020! You know I agree with you that good information should be available for those who seek it. As I mentioned when we spoke about this, we do have particular requirements for which sources are considered scholarly, and some general editing rules of thumb (like how many sources are cited per fact). You can find most of these in the science guidelines (http://me-pedia.org/wiki/Science_Guidelines).

Since this is a Wiki, the page would be open to improvement by anyone at any time. In the case of vandalism or unhelpful edits, we have the ability to revert to the previous edits, but locking a page indefinitely after one set of edits would be something we would only do if we were seeing (or suspected we would see) repeated vandalism on the page.

[Edit -- reading quickly through, let me know if there's anything I've missed.]

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

References

References

Headings and SEO -- ~Njt (talk) 12:13, June 30, 2020 (EDT)

Please avoid using questions as headings, and avoid using the page name within headings. The MediaWiki software is built by Wikipedia so should already be able to work out that a subheading is linked to the topic page, and phrasing the first line under the heading carefully should be enough, e.g. The symptoms of MCS include...". Headings should be worded as per the examples on MEpedia:Article outlines.

SEO rankings increase when small pages cover the exact topic, e.g. you could create a few small page in the format of a list, Multiple chemical sensitivity symptoms then use {{See also|Multiple chemical sensitivity}} to point back to the original page. The original page would a less detailed description of symptoms, and could use {{See also|Multiple chemical sensitivity symptoms}} to take users back to it. The new page would go in the and. I am thinking of creating a list page for Deaths from myalgic encephalomyelitis/chronic fatigue syndrome, so will be interested to see how this ranks compared to the causes of death, Sophia Mirza, and severe and very severe ME pages. (Sophia's is one of the top pages on MEpedia). ~Njt (talk) 12:13, June 30, 2020 (EDT)

Images

I believe images would help SEO. If you would like a simple image creating eg for the symptoms, can you let me know what design and colors (green? primary colors?) you would like or links to any images with the layout you want. Images are highlighted by search engine results and encourage views and also get saved to pinterest which results in more views. ~Njt (talk) 12:13, June 30, 2020 (EDT)

Additions to history -- Silliestchris (talk) 05:54, September 23, 2021 (UTC)

It could aid patient advocacy to put some precedent setting decisions in here. One court case example that comes to mind is the Canada Revenue Association vs a woman (a large MCS advocate in Canada, forget the name) who had claimed tax deductible renovations on her home to accommodate MCS. Would this be helpful here, or would a section on MCS in the court system be more suitable?

MCS as a symptom of a disease, not a disease. -- Silliestchris (talk) 06:02, September 23, 2021 (UTC)

This is a controversial idea, I know, and I am not aiming to make any additions or changes. However, given the rapidly advancing state of knowledge on the underlying mechanisms of MCS, I think it will be helpful to have a discussion about this idea.

The more I learn about MCS and talk to people with it, the more it becomes apparent that the sensitivity is a symptom of underlying problems which are diverse, complex, and different for every individual. And yes, the underlying problems are almost universally caused or initiated by toxic exposure. One example is Mast Cell Activation Syndrome. Another is Oxidative Stress. You get the idea. Thoughts?

Re: MCS as a symptom of a disease, not a disease. -- Aletheia2020 (talk) 08:12, February 21, 2022 (UTC)

I agree with you. I think MCS is a sensitivity syndrome that likely has different causes in different people.

But I also think that for recognition purposes (eg. access policies) having it defined as a condition (even if that only means an array of symptoms provoked in particular ways) may be helpful.

Are you suggesting talking about this specifically or just changing reference words

Additions to recognition section -- Silliestchris (talk) 16:02, September 23, 2021 (UTC) -- Silliestchris (talk) 16:02, September 23, 2021 (UTC)

It would be helpful for patients to add some more detail on legal recognition. For example, the Canadian Human Rights Commission has taken a rather firm stance on environmental sensitivities: https://www.chrc-ccdp.gc.ca/sites/default/files/policy_sensitivity_0.pdf

"Individuals with environmental sensitivities experience a variety of adverse reactions to environmental agents at concentrations well below those that might affect the “average person”. This medical condition is a disability and those living with environmental sensitivities are entitled to the protection of the Canadian Human Rights Act, which prohibits discrimination on the basis of disability."

Re: Additions to recognition section -- Silliestchris (talk) 16:02, September 23, 2021 (UTC) -- Aletheia2020 (talk) 08:15, February 21, 2022 (UTC)

I guess the issue with human rights recognition is that it doesn't mean anything in the medical world. So I kept the recognition section about medical index or medical college recognition

But I think using recognition by human rights agencies could be inserted in the access sections. I mention a ruling by the Australian HRC so perhaps the Canadian ruling could go alongside that?

Aletheia2020

New references for notable studies section -- Silliestchris (talk) 16:38, September 23, 2021 (UTC)

A recent review paper, published in reviews on environmental health about a week ago, would be useful to have in this section:

https://www.degruyter.com/document/doi/10.1515/reveh-2021-0043/html

What's in a name? Adding synonyms to the introductory sentence and redirect pages -- Silliestchris (talk) 22:53, October 1, 2021 (UTC)

MCS is known by many names, depending on the legal context and jurisdiction. For example, The Canadian Human rights commission likes to call it "environmental sensitivity" although this is a more broad umbrella term. Another term being used in pathophysiological literature is TILT. Some more examples:

Environmental illness Chemical intolerance Gulf War syndrome Sick building syndrome

Or perhaps we should remove IEI from the first sentence altogether and have a section dedicated specifically to alternate names?

Thoughts?

Re: What's in a name? Adding synonyms to the introductory sentence and stub pages -- Silliestchris (talk) 22:54, October 1, 2021 (UTC)

I think that environmental illness is too broad (I think it means any disease caused by the environment or by pollutants, so by definition, it could include cancers, parkinsons etc...I think it's more the umbrella term and I think the Canadian HRC are using it incorrectly re MCS

Chemical intolerance--again, I don't know how it's defined

Gulf war syndrome--specific and disintct from MCS

SIck building syndrome--think it has poor recognition?

The advantage of MCS and IEI is that they're the terms most commonly used in the medical reviews, the WHO's taskforce on the subject and the largest consensus papers on the condition, so I think it's better to stick with them

Aletheia2020

Re: What's in a name? Adding synonyms to the introductory sentence and redirect pages -- Aletheia2020 (talk) 08:19, February 21, 2022 (UTC)

Replace this text with your reply

Some copy-editing errors... -- Starfish (talk) 13:06, November 12, 2024 (UTC)

Hello, I am hoping to make some corrections to typos, punctuation and some wording in this MCS page. Could an experienced editor please make these changes for me as I am not permitted as a new editor? I have made a start at this and will suggest a few more changes at another time. Thanks for your help.

The changes I would make are:

● Signs and symptoms section:
Change pathlogies to pathologies

● Chemicals that trigger symptoms:
Typo- missing word
Insert "for"
. . common triggers for adverse symptoms (for) people

● Correction to abbreviations.
Convention for abbreviating "exempli gratia" is e.g.
5 instances of e.g. in the text. Please change eg. to e.g.,

● Accessibility needs
Typo- extra "the"
The most influential of these may be the indoor air quality policy of (the* remove) the U.S Centers

● Hospital care:
Typo missing word
Insert "in".
Common (in) Canada ...

● Possible causes:
Typo- missing word
Insert "for"
"The Italian consensus on MCS of 2019 said that the current consensus (for) what is the cause of MCS is that it likely has multiple causes—chiefly biochemical and neuro-physiological and also causes related to the limbic system and perhaps also genetic predisposition."

● Toxicological
Remove second "that" in sentence.
i.e. "said that while further research was required to confirm Pall's theory, (that* remove) his hypothesis. . . A 2019 scientific review said that while further research was required to confirm Pall's theory, that his hypothesis "had found broad consensus in the scientific community” and was compatible with previous hypotheses, including Dr. Iris Bell's theory of neuronal sensitization and William Meggs' theory of neurogenic inflammation.

● Psychological
Typo- missing word.
"hypothesis" or "notion"
Remove word "is"
The main arguments used to support the ("notion") (is*remove) that MCS has psychological causes have been:

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

See myalgic encephalomyelitis.

See chronic fatigue syndrome.

Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

bias Bias in research is "a systematic deviation of an observation from the true clinical state". (Learn more: me-pedia.org)

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

See somatic symptom disorder.

stress Stress can by either physical or psychological, or both. Stress is either 1) a state of emotional or psychological strain or 2) the physical stress (pressure or tension) that a physical object such the human body is placed under, e.g., a stress test is a medical test that monitors the cardiovascular system during strenuous exercise.

adverse reaction Any unintended or unwanted response to a treatment, whether in a clinical trial or licensed treatment. May be minor or serious.

World Health Organization (WHO) - "A specialized agency of the United Nations that is concerned with public health. It was established on 7 April 1948, and is headquartered in Geneva, Switzerland. The WHO is a member of the United Nations Development Group. Its predecessor, the Health Organization, was an agency of the League of Nations." The International Statistical Classification of Diseases and Related Health Problems (ICD) is maintained by WHO.

See World Health Organization.

The limbic system is a group of structures between the forebrain and hindbrain mostly linked to emotions, memories and behavior. Includes the amygdala, limbic cortex, hypothalamus, cingulate gyrus, parahippocampal gyrus, hippocampus and hippocampal formation, dentate gyrus, subicular complex and septal area.

limbic system The limbic system is a group of structures between the forebrain and hindbrain mostly linked to emotions, memories and behavior. Includes the amygdala, limbic cortex, hypothalamus, cingulate gyrus, parahippocampal gyrus, hippocampus and hippocampal formation, dentate gyrus, subicular complex and septal area.