I think there has to be a generous dose of humility within our systems and within the medical and legal communities.
I crossed paths once with this lady:
What I learned from her is how many people suffer from debilitating, severe eye pain that was always considered to be seriously out of proportion with what the eye doctors could see and measure.
The people in her world were universally told that there was nothing wrong with them (and/or that it was all psychiatric), by doctor after doctor after doctor.
But it’s not really the case. They just needed better diagnostics:
They got a bigger microscope, so to speak.
In talking with the woman in that article, the stories were heartbreaking: it’s just dry eyes. Use some drops and STFU.
How many breakthroughs resulted from such advances as CT, MRI, PET, and SPECT scans ? How many people were gaslit all along the way by well meaning, but perhaps overly cynical physicians ? How much harm is done by people who – figuratively and literally – sit in judgment of people whose health issues elude diagnosis ?
Who is harmed by providing her with what she needs to live a minimally comfortable life? And how is that a greater harm than what amounts to sentencing a woman to death for having an inconvenient illness that no one can figure out?
Yeah. There’s no paper trail, no history of recurrent visits to doctors, no laundry list of testing that has been performed, no end of hoops you have to jump through and evaluations to undergo.
Nothing.
You just ask where to sign, and then you get a room at the Four Seasons.
From the summary of a comprehensive review of multiple chemical sensitivity (the report out of Quebec mentioned earlier):
"These (physical/biochemical) alterations are not specific to MCS. They are also reported for chronic fatigue syndrome, posttraumatic stress disorder, electromagnetic hypersensitivity, fibromyalgia, depression, somatization disorder, phobias, and panic disorder.;. All of these disorders have in common is the presence of chronic anxiety.
Chronic anxiety helps explain all of the symptoms of SCM syndrome. The same alterations and dysfunctions are found and measured there.
Over the long term, the nearly unavoidable recurrence of these acute stress episodes in these individuals leads them to develop neuroinflammation, oxidative stress, and, inevitably, chronic anxiety.
Based on these new insights, the authors of this report rebut the hypothesis that there is a relationship between MCS and the toxicity of chemicals present at normal concentrations. Nonetheless, the chronic biological disturbances observed with this syndrome, the severity of the symptoms experienced, the social and professional repercussions, and the high prevalence of MCS in the population, qualify it as a real health issue.
Given that those suffering from MCS are, to varying degrees, genuinely ill and that their condition would justify appropriate medical and social support; the authors favor the establishment of centres of expertise specializing in MCS, as well as the continuation of the scientific monitoring of this syndrome."
Nothing there about building or renting special chemical-free facilities that MCS sufferers can hole up in for the rest of their lives, as opposed to treating the true basis of their signs and symptoms.
*one area in which there’s considerable room for disagreement with the report is its lumping in depression and potentially some other disorders with the likes of MCS and electromagnetic hypersensitivity. Depression may have a significant anxiety component, or not. Assuming depression is caused by anxiety and not specifically addressing the biochemical imbalance implicated in many cases of depression sounds like a strategy set up for failure.
That’s really more of a ‘business decision,’ to be made by policy makers.
That’s really in public health and medicine’s domain.
I also found the Conclusion of your linked document compelling:
Conclusion
The authors of this report conclude that, based on the available data, there is no evidence to support the hypothesis of a relationship between MCS and the toxicity of chemicals at their usual concentrations in the environment. People with MCS, therefore, are not hypersensitive to chemical substances. Nonetheless, the chronic biological disturbances observed, the severity of the symptoms experienced, the impact on the social and professional lives of affected individuals, and the high prevalence of MCS in the population qualify it as a real health issue.
It becomes a health issue if it perpetuates a false narrative and leads to long-term isolation of the patient, instead of providing them with care that can help them return to society.
That seems to imply a dichotomy that I don’t think should exist: meet their current emergent needs and try to find a way to make their (underlying health) conditions better.
Setting aside questions of resource allocation, are you suggesting that it’s medically appropriate to “meet their current emergent needs” by just assuming that the patient’s subjective view of what they need is correct?
IME - which of these conditions you get diagnosed depends largely - if not primarily - on the health care provider who is doing the diagnosing. My favorite is when they diagnose “overlay” of various conditions. Fibromyalgia, as well as myofascial pain, depression with anxious stressors, and an overlay of somatoform disorder. Then compound it by prescribing 10+ drugs, with significant potential side effects and interactions.
And - of course - the most consistent recommendation for all of these conditions is to get out and be active!
People are funny creatures.
Hey - I never knew Naomi Judd had MCS! (Too soon?)
Although their input can, of course, be sought. It’s appropriate to figure out what makes ‘patients’ better, what makes them worse. When researchers start looking at relatively larger populations, patterns emerge that can be helpful in guiding diagnosis, treatment, and public policy.
There are also entire institutions (with access to other entire, and appropriate, consulting institutions) with – usually – very detailed and well codified processes that are all designed to figure these things out.
I presume Canada has its own equivalent systems to basically everything that the US has to call upon in cases like these.
As I said earlier, a patient doesn’t generally raise their right hand and swear that they’re really, really sick, and are then given a suite at the Four Seasons for the rest of their life.
I suspect we are going to be dealing with MCS, electromagnetic hypersensitivity and unjustified/improper treatment of those and similar disorders for a long time to come.
It’s been a decade since a landmark CDC study should have put to rest the idea that “Morgellons Disease” was an actual infectious disorder as opposed to a psychiatric condition. But there remain a relative handful of health care providers who insist that it’s caused by spirochetes or another, unidentified pathogen.
The opportunity to profit from others’ suffering is a contributing factor in perpetuating such misconceptions.
Indeed. We are in complete agreement that nobody should try to deny or minimize the reality of the symptoms or the suffering. As stated in the report summary above:
Given that those suffering from MCS are, to varying degrees, genuinely ill and that their condition would justify appropriate medical and social support; the authors favor the establishment of centres of expertise specializing in MCS, as well as the continuation of the scientific monitoring of this syndrome
But you imply that in this specific case there is some obvious immediate course of action that should be taken to “meet their current emergent needs”. Given that there is no evidence that there is any external physical cause of the symptoms, what specifically are you advocating?
That’s the name I was trying to remember! Haven’t seen one of those cases in a while.
I recall one case years back, where a claimant was found disabled and awarded benefits based on some mental disorder. The moron filed an appeal, arguing that while he agreed that he was disabled, he objected to the idea that it was not due to physiological conditions.
I succeeded in persuading him it was in his best interest to drop his appeal.
I just took a few minutes and looked at several peer-reviewed, published papers about the link between Cytochrome P450 [link separator] single-nucleotide polymorphisms (genetic defects in a portion of the body’s ‘chemical detoxification system’).
Each paper that I scanned found the same thing: a high correlation between inborn defects of metabolism and detoxification and Multiple Chemical Sensitivity.
So … if somebody’s body literally doesn’t ‘neutralize’ and ‘process’ endogenous and exogenous chemicals in a ‘normal’ way (forgive the overuse of quote marks, but they seem appropriate), it stands to reason that bad things might happen.
After a series of worsening adverse drug reactions (what immunologists and pharmacologists told me is a very typical trajectory: the likelihood and the severity both become greater), I was finally diagnosed with a handful of these P450 defects.
Some kinds of drugs, my body metabolizes abnormally quickly (so the effects wear off much quicker than normal, and/or higher doses are indicated).
Some kinds of drugs my body basically struggles mightily to detoxify/metabolize at all (so the chemical components don’t break down as normal, and bad things can happen, and have).
And this can be true of virtually any chemical, from within or from without (ie, to which I am exposed without having ingested, or otherwise willfully put into my body).
I don’t have anything like MCS, but I have been warned by the Chief of Immunology at Mayo and by one of the leading adverse drug reaction researchers in the world, “Not to take another prescription medicine unless it’s absolutely necessary to save your life.”
So things can build up in some of us, with disparate consequences.
Think about metabolic byproducts of no end of chemical exposures … as … something akin to cholesterol. But instead of vessels narrowing … the body becomes a sort of ticking time bomb.
The first paper that comes up in your Internet search concludes:
“An apparent association between number of active cytochrome P450 2D6 alleles and MCS status was not statistically significant (OR=1.2, p=0.28). Fast arylamine N-acetyltransferase 2 metaboliser status was associated with severity of chemical sensitivity only in the most severely affected group in the population sample (OR=3.1, p=0.04). The cholecystokinin 2 receptor allele with 21 CT repeats was associated with MCS when compared in post hoc analyses with all individuals from the population sample (p=0.02). Genetic variants in paraoxonase 1 and methylene tetrahydrofolate reductase were not associated with MSC or with self-reported chemical sensitivity in the population sample. Our results suggest that variants in the genes examined are of less importance to MCS than previously reported or that gene-environment interactions or significant degrees of genetic heterogeneity in MCS underlie inconsistent findings in the literature.”
I’m unaware of any consensus that genetic/enzymatic defects precipitate MCS.*
Such defects would also fail to explain how odors alone commonly trigger these patients.
*Where in the specific links you provided do the authors say that the evidence supports a link to MCS?
In some of these studies, the biggest assertion that I might make is that there seems to be ‘signal.’
This sort of illness doesn’t generate significant funding dollars, so there’s no surprise that studies aren’t occurring across the globe.
It’s also quite possible, or likely, that many of these rather nebulous ‘diagnoses of exclusion’ or ‘syndromes’ have no end of subtypes, making exact diagnoses and treatment that much harder.
But I would guess that most of these researchers would say that – as in the Canadian document you linked to above – there’s something out of whack with these people.
I’m getting more of a sense of Gish Galloping rather than anything concrete. Can you briefly summarize what in all those articles impresses you?
You throw a bunch of (possibly related) studies at us, then say studies aren’t being done?
Given the number of people who believe they have MCS (especially in Canada, for whatever reason), one would expect drug companies to jump at the idea of patenting and selling anti-MCS medications, as well as bankrolling studies to come up with antibiotics to combat spirochetes supposedly causing “Morgellons disease.”
It’s kind of an axiom in research that if you look at enough variables in the course of a study, particularly one looking at a relatively limited number of patients, one or more will quite possibly be “out of whack”, similar to when you have blood taken for a big chemistry panel.* Such results need to be replicated on as large a scale as feasible before they can be accepted as consistent findings.
I have no doubt there’s something wrong with MCS sufferers, but remain unconvinced that there’s a genetic reason they can’t abide even the minutest exposure to a huge range of chemical substances.
*For instance: “The comprehensive metabolic panel, or chemical screen, (CMP; CPT code 80053) is a panel of 14 blood tests which serves as an initial broad medical screening tool. The CMP provides a rough check of kidney function, liver function, diabetic and parathyroid status, and electrolyte and fluid balance, but this type of screening has its limitations. Abnormal values from a CMP are often the result of false positives and thus the CMP may need to be repeated (or a more specific test performed), requiring a second blood drawing procedure and possibly additional expense for the patient, even though no disease is present. This test is also known as SMA12+2 test.”
**Anecdote: I once had such a panel done which showed a couple of liver function test parameters way out of whack. I was convinced that I had a raging viral hepatitis - until repeat results came back negative. False alarm, so sorry.
