Talk:Multiple chemical sensitivity

Chiming in

Hi, this is RSM chiming in. I am new to this so I hope I'm doing it right.

Could we be turning to the science of toxicology to assist us in developing this article? And the notion of "toxicity" or "toxic chemicals" or "toxins" and the relativity of what constitutes as "toxic?"

A toxicology 101 idea is that "the dose is the poison."

There is that-which-is-toxic to a class (plants, insects, animals, human beings...even certain subsets of those classes, like this insecticide is toxic to ).

There is that-which-is-toxic to an individual. For the purposes of this discussion, to focus on human individuals. Every person has a unique limit to what their body can handle before it starts expressing symptoms. Even water can be toxic in the right dose. See hyponatremia. And this is where we diverge into clinical etiology and diagnostics. People experience toxicity through physiological responses in these classes: sensitivities, intolerances and allergies. I feel like there needs to be some disambiguation in the article. There is the idea that these are on some kind of spectrum when we are talking about human organ systems. MCS is a syndrome, where multiple organ systems can be impacted through exposure, as well as in relation to to multiple chemicals, notwithstanding allergies and intolerances. So then are peanuts, the natural substance, toxic or not? It really depends upon who we ask. Some people are fine to eat them, while others may get sick or die if they do. Toxicity is clearly relative.

Its also important to note that doctors don't really spend the time to find out what exactly a person reacts to when they are reacting poorly to a medicine. The doctors just put on a patient's chart that "Milk of Magnesia" is an allergy, when the problem ingredient could be menthol, an ingredient.

Seems like there is a relationship or disambiguation needed between the terms "ingredient" and "chemical" or "chemical compound." People with MCS often avoid certain "ingredients" in products.

For clinical studies for determining "human toxicity," these engage healthy adults, and not children, elders, or sick/disabled people -- as a matter of ethic. And there are lots of sources to point to besides this one. https://clinicalcenter.nih.gov/recruit/ethics.html

Is it really a stretch to deduce that a child's, elder's, or ill person's body would respond even more problematically to a wood smoke exposure, for example, than would a healthy adult? We can see on city water quality reports and with public air quality monitoring that there are warnings for "sensitive people" calling out the risk to children, elder or ill people. Here is one in my city:

• https://www2.minneapolismn.gov/media/content-assets/www2-documents/residents/2023-CCR-FINAL.pdf

Quote from the report states: "A person drinking water with a contaminant at or below the comparison value would be at little or no risk for harmful health effects. If the level of a contaminant is above the comparison value, people of a certain age or with special health conditions - like a fetus, infants, children, elderly, and people with impaired immunity – may need to take extra precautions. Because these contaminants are unregulated, EPA and MDH require no particular action based on detection of an unregulated contaminant. We are notifying you of the unregulated contaminants we have detected as a public education opportunity." Someone or more people at the city must perceive liability to construct a statement like that.

Could we be turning to the practices surrounding hazardous materials (HazMat) to assist us in developing this article?

Our communities do in fact agree that some chemicals are highly toxic, so much that regulatory agencies require manufacturers to publish a report called a Safety Data Sheet (SDS) or a Material Safety Data Sheet (MSDS). Many substances in these formulations are proprietary, like fragrance, so the data sheets are not completely transparent. The manufacturers are required to call out only certain kinds of chemicals/chemical compounds because there are laws about them.

This relates to the the toxicology idea above that "the dose is the poison".

Could we be turning to the public health agencies on certain toxins and special call outs to certain populations to find sources to support this article? For example, asthma is a health condition which is arguably multiple chemically sensitive. Also those with allergies. MCS is honing in on that-which-is-not-these against many different kinds of chemicals.

It is notable that many state agencies, Public Health namely, widely warn people of the hazards and health concerns for exposure to things like wood smoke because of the toxins released and have cited sources on their pages. They even call out the hazardous chemical. And yet people continue to expose themselves to campfires and claim no imminent adverse effect. How many illnesses creep up on people who are having no detectable problems? People with MCS reportedly detect the source of the problem.

Could we be differentiating how different countries or communities treat the relationship between public health and toxins? Europe, for example, has much more stringent standards for what can go into food than the US. I have seen product labels for the same brand name of food item, one which contains loads of synthetic preservatives from the US and another from a different country that has none of those."

Could we be turning to Environmental Sciences and studies that come from these agencies?

What do we do about tried and true sources that are over 10 years old? We don't dispute the importance of gravity (which is still technically a theory to my last recall and not proven) and yet we use the values derived from Sir Isaac Newton's work all the time in the practice of engineering. That work a lot more than 10 years old.

This idea of source age plays into the politic of MCS as well. Whomever is in any form of socio-economic power has a measure of bias for or against whether this illness is ultimately and finally legitimized. White men, for example, have long benefitted from keeping women and BIPOC out of the academy, out of positions of power, influence and authority -- these groups also happen to have bodies that are different than that of white males, but still not free from the impact of MCS. Wealthy/wealthier people have the power of greater mobility and flexibility to escape toxic exposures and greater access to clean air/water because of their wealth. Wealthy people can afford to hire cleaning people, for example, to have closer, more hazardous exposures to toxins. https://mcnair.ucdavis.edu/sites/g/files/dgvnsk476/files/inline-files/Barron%20Susana_Atomic%20No.%2017_%20Downplaying%20the%20Insidious%20Effects%20of%20Chlorine-Bleach-Containing%20Products%20in%20the%20Cleaning%20Industry.pdf

Maybe we need a Socio-Economic Consideration heading for the article when discussing legitimacy. Root concept of legitimacy is legal, medicine is very closely tied with public policy as it determines who gets funding and how much for what purpose. Disabled people (those who cannot work gainfully or fully integrate into their communities) are at greatest impact of what medical diagnostics are considered legitimate. many disabled people are currently suffering and dying bc no one has figured out what their disease is and there is no diagnostic code to point to.

Diagnostic criteria were in fact developed and a Medical Consensus achieved in 1992.

Misc Articles to add in lieu of request for more recent research:

Multiple chemical sensitivity: It's time to catch up to the science

John Molot, Margaret Sears, Hymie Anisman

https://www.sciencedirect.com/science/article/pii/S0149763423001963

This article has more references in it that could be useful here.

End of RSM contributions for now. I'm not writing in the style of the Wiki article, but hope one of you can take and run with the ideas and construct something we can all agree on. Thanks for allowing me to participate. — Preceding unsigned comment added by Rbccstmrtn (talk • contribs) 20:08, 13 September 2024 (UTC)

Hello, @Rbccstmrtn. If memory serves, the "canary" idea was more popular in the 1990s and 2000s. The current narrative seems to have turned a bit more towards brain damage (whether traumatic [e.g., after an explosion] or otherwise). Also, healthcare providers have turned towards the idea that what matters is finding ways for each individual patient to cope, rather than having arguments about what "really" caused it or whether it should "really" be classified this way or that way.

The paper you mention is in Neuroscience & Biobehavioral Reviews, which is generally a good journal.[1] The type of paper is a review article, which is a good type of source for Wikipedia. But I have some doubts about the authors. The middle one has published papers in the past that seem to contain errors. I do think we should consider this source, but I would be wary of assuming that it aligns with mainstream views. WhatamIdoing (talk) 22:50, 13 September 2024 (UTC)

Claim that a source is not a reliable source

@Valjean Re your removal of the info from Genius, "Chemical sensitivity: pathophysiology or pathopsychology?, can you please explain how a source that is already used in two other places in this article is not a source that can be used a third time? Moreover the material you replaced says the exact opposite of that which the source says. Morgan Leigh | Talk 04:18, 27 May 2024 (UTC) Addenda: Your claim that "The conclusion recognizes the controversial nature of the described "conditions"" has nothing to do with the material you removed, which is about the claim that detoxification is not scientifically validated, which is completely at odds with the source that says "The preferred medical management of CS, designed to restore persistent health and freedom from SRI, involves elimination of the initiating body burden of primary toxicants. The purging of the underlying toxicant burden through innate mechanisms of toxicant elimination or through clinical detoxification interventions for persistent pollutants seems to consistently diminish the immune dysregulation associated with CS and to gradually ameliorate the clinical manifestations of CS." Morgan Leigh | Talk 05:09, 27 May 2024 (UTC)

I have my doubts that this 11-year-old source is strong enough to support the claims that it makes, and it doesn't match with what I see in other, more recent sources, which makes me suspect that this particular sentence about detoxification is WP:UNDUE.

Also (but less importantly), I happened to notice that every paper Genuis cited in support of his detox claims was written by himself. This makes it look like he's the only person who makes such claims. Not my job to do peer review for them, but it does make me wonder a little if that was because he actually couldn't find a single source that agrees with him. WhatamIdoing (talk) 04:59, 27 May 2024 (UTC)

In a field that has so few people studying it it is not uncommon for authors to be citing their own work, and this alone is not reason to suspect the quality of the work. Our opinions about the strength of sources is not a basis for their addition to or removal from Wikipedia because, as you so rightly state, it is not our job to do peer review.

Can you please provide the more modern sources whom you mention so that we can update the article with the information they contain? But until such sources are provided I see no reason for us to second guess a source that meets the criterion for being reliable. I am not particularly wedded to this source at all, I made the change I did solely because it said the exact opposite of that which the source itself said. If you can demonstrate that the source doesn't meet the criterion required for reliability then let's remove it and the info that is being cited by it if no other sources for it can be found. Morgan Leigh | Talk 05:27, 27 May 2024 (UTC)

Sure, I'd suggest CURRENT Diagnosis & Treatment Occupational & Environmental Medicine, which has a whole chapter on MCS. We cite the 2014 edition in the article, but a newer one came out in 2021. It's a Doody's Core Title, which means it's recommended by experts for smaller medical libraries – exactly the kind of place that needs to have reliable mainstream medical school textbooks. WhatamIdoing (talk) 06:22, 27 May 2024 (UTC)

Thanks for that. I will get a hold of it. But if you have access now to it can you see if it says anything about detoxification as a treatment please? Morgan Leigh | Talk 04:08, 29 May 2024 (UTC)

I don't have that one on hand at the moment, but https://onlinelibrary.wiley.com/doi/10.1111/ddg.14027 says that detoxification attempts make things worse (NB: not just useless, but actually harmful overall). WhatamIdoing (talk) 07:17, 1 June 2024 (UTC)

Thanks for finding that interesting paper.

I don't think it says detoxification is useless though. It says "not evidenced based" and "it is difficult to evaluate the benefits of individual substances", which doesn't say anything about detoxification's actual efficacy or harmfulness, rather it speaks to a lack of research demonstrating it one way or another.

Where it says "Treatment with a multitude of pills and infusions may lead to “catastrophizing”, thus making patients perceive their disorder particularly negatively", they are making a really good point about the psychological effects of continual and intensive medical treatment, which can cause harm to patients. This applies just as much to that which all doctors do to treat any condition e.g. they try one treatment, then another, then another, until they find one that works, or they give up. If it is going to be used as the basis for a claim that detoxification is harmful then it would need to clearly state that this is the basis for that claim being made in this paper.

Overall I think because (a) the current text about detoxification says the opposite of that which the source it cites says and (b) both of the sources under discussion here are are peer reviewed and published, we should include what they both say, e.g. Genius recommends detoxification while Harter et al describe it as not supported by evidence and possibly psychologically harmful. Morgan Leigh | Talk 04:19, 3 June 2024 (UTC)

The source says "Some authors recommend...“detoxifying” measures. However, these measures are not evidence based....may lead to “catastrophizing”...this phenomenon is known to have a negative impact on the subsequent disease course".

In other words, detox leads (sometimes) to catastrophizing leads (usually) to bad outcomes. WhatamIdoing (talk) 20:58, 7 June 2024 (UTC)

Then we are in agreement as to what Harter et al. says but for some reason the information from Genius has been removed. Why is it so? Morgan Leigh | Talk 09:15, 22 June 2024 (UTC)

I don't think we should include any material in support of detox, because:

• Genuis appears to be the only researcher in the world who researches or promotes detox, and
• No other high-quality source appears to agree with him or endorse his work, and
• At least one other high-quality source appears to disagree with him.

If you think that detox should be included (favorably), then it would help to find high-quality sources that weren't written by Genuis. At the moment, if I run across another high-quality source that says detox is a bad idea, then I'd be inclined to include a warning against detox. WhatamIdoing (talk) 19:40, 29 June 2024 (UTC)

@Morgan Leigh; I agree with you that there are only few researchers (and thus few sources) in the field. It’s understandable. With MCS being labelled as altmed, and it’s patients being labelled as ‘“may have a tendency to "catastrophically misinterpret benign physical symptoms"’ by our article, I don’t think the field can attract much talented researchers ;-) Just like editors are people, scholars are people too. People need bread. Few people would be interested in a field / condition that is said to be kind of imaginary and “alternative” and hence lacking research fundings. It’s like a loop, and it seems that it’s going to be “altmed” forever. --Dustfreeworld (talk) 21:26, 2 June 2024 (UTC)

Abysmal Diagnosis Section

This section relies almost entirely upon a single book and written is in a style as to suggest factitious disorder. Diagnoses indeed does NOT depend entirely upon self-reporting "claims" by patients. Rather the literature seems to support it's diagnosis after ruling out other conditions, so that a great deal of testing is involved.

• NIH
• Mast cell activation disease and the modern epidemic of chronic inflammatory disease, Afrin, Lawrence B., Translational Research, Volume 174, 33 - 59

While there seems to be a pattern of anxiety disorders being strongly associated with MCS/IE/MCAS, it's woefully irresponsible and intellectually lazy to conclude it to therefore simply be imagined. We're aware of a great deal of other conditions that are also related to chronic stress, yet are clearly somatic. Examples include heart disease, high blood pressure, ischemic attack, weakened immune system, etc. While some of the literature indeed examines the possibility of the condition being a direct result of psychological problems -- essentially a manifestation of the patient's fear that a trigger will make them sick -- other authors point out (rightfully in the view of this editor) that the former is just an exercise in mental health stigma, wrongfully casting unnecessary doubt on patient veracity. Daniel Santos (talk) 07:58, 21 October 2024 (UTC)

@Daniel Santos, I don't think we can use either of these sources.

The first source is from 1992, which is a serious WP:MEDDATE failure. There is no way we can even pretend that a 32-year-old source represents the current approach in this rapidly updating area; it doesn't pass the Straight face test.

The second source is from 2016, which is a WP:MEDDATE issue, though less severely. However, it doesn't appear to mention multiple chemical sensitivity at all. The main subject is Mast cell activation syndrome. WhatamIdoing (talk) 16:13, 21 October 2024 (UTC)

Sense of smell that disturbs people

@Daniel Santos, your profanity-laced edit summary indicates that you think "a disturbingly acute sense of smell" is unencyclopedic language. This isn't yellow journalism: it's a straight-up description of the facts. Some MCSers have – or are dismissed as "only" having by healthcare providers – a sense of smell that goes beyond the ordinary level of acute (e.g., "mother can smell cigarette smoke on her teenager at 20 paces"), but is so acute that it disturbs their everyday lives, hence "disturbingly acute". How would you prefer to indicate that this is not "merely" an acute sense of smell, but an extreme version of that? WhatamIdoing (talk) 03:34, 23 October 2024 (UTC)