This may be old news to some, but it bears repeating.
1.J Allergy Clin Immunol. 2000 Feb;105(2 Pt 1):358-63.
Carbon dioxide inhalation challenges in idiopathic environmental intolerance.Poonai N, Antony MM, Binkley KE, Stenn P, Swinson RP, Corey P, Silverman FS, Tarlo SM.
New York (MedscapeWire) Feb 18 — A study by Canadian researchers in the February issue of the Journal of Allergy and Clinical Immunology suggests that patients with idiopathic environmental intolerance (IEI, formerly known as multiple chemical sensitivity) display high anxiety sensitivity similar to patients with panic disorder (PD) under controlled conditions.
Previous studies have been unable to prove any underlying allergic or toxic basis to IEI. Other research has found that IEI has increased psychiatric morbidity and shares many features with PD which involve the onset of sudden anxiety. Symptoms shared include chest tightness, breathlessness, palpitations, apprehension, and avoidance of situations where symptoms occur.
In this blinded study, patients inhaled differing concentration of oxygen and CO2 through a flow spirometer. After each inhalation, patients were asked to rate each panic symptom and their sensations of panic and fear on an objective Diagnostic Symptom Questionnaire.
When inhaling increasing concentrations of CO2, a large percentage (48%-92%) of patients with PD frequently experienced panic symptoms, whereas only 5% of healthy subjects noted similar symptoms. Researchers found that 71% of IEI patients fulfilled similar PD criteria after inhaling CO2. There were no significant differences between IEI and control groups in terms of actual breathing rate, heart rate, and other physical measures.
Investigators concluded that the high rate of anxiety response to inhaled CO2 among IEI patients shows a tendency to overreport and possibly catastrophically misinterpret benign physical symptoms, a consistent finding among patients with PD. The authors suggest a psychological assessment should be considered in all patients with IEI.
2. J Allergy Clin Immunol. 2006 Dec;118(6):1257-64. Epub 2006 Sep 25.
Multiple chemical sensitivities: A systematic review of provocation studies.Das-Munshi J, Rubin GJ, Wessely S.
Section of Epidemiology, Institute of Psychiatry, London
A systematic review of provocation studies of persons reporting multiple chemical sensitivities (MCS) was conducted from databases searched from inception to May 2006. Thirty-seven studies were identified, testing 784 persons reporting MCS, 547 control subjects, and 180 individuals of whom a subset were chemically sensitive. Blinding was inadequate in most studies. In 21 studies odors of chemicals were probably apparent; 19 of these reported positive responses to provocations among chemically sensitive individuals, and 1 study demonstrated that negative expectations were significantly associated with increased symptom reporting after provocations. Seven studies used chemicals at or below odor thresholds, and 6 failed to show consistent responses among sensitive individuals after active provocation. Six studies used forced-choice discrimination and demonstrated that chemically sensitive individuals were not better at detecting odor thresholds than nonsensitive participants. Three studies tested individuals by using nose clips/face masks and confirmed response, possibly mediated through eye exposure. Three studies used olfactory masking agents to conceal stimuli, and none of these found associations between provocations and response. We conclude that persons with MCS do react to chemical challenges; however, these responses occur when they can discern differences between active and sham substances, suggesting that the mechanism of action is not specific to the chemical itself and might be related to expectations and prior beliefs.
PMID: 17137865 [PubMed – indexed for MEDLINE]
3. Clin Neuropsychol. 2006 Dec;20(4):848-57.
MMPI-2 profiles of persons with multiple chemical sensitivity.Binder LM, Storzbach D, Salinsky MC.
Oregon Health and Sciences University, Beaverton, OR, USA.
We compared the MMPI-2 profiles of adults with multiple chemical sensitivity (MCS), epileptic seizures (ES), and nonepileptic seizures (NES). Both NES and MCS are medically unexplained conditions. In previous studies profiles associated with NES were elevated on scales Hs and Hy, compared with profiles associated with ES. We predicted that profiles associated with MCS would be elevated on Hs and Hy compared with the ES group. Patients with ES and NES were diagnosed after intensive EEG monitoring using published criteria. MCS was diagnosed if there was a complaint of illness in response to multiple common odors at levels that are not noxious to most people. All the MCS cases had legal claims for injury related to chemical exposures. The results showed that on MMPI-2 scales Hs, D, and Hy the MCS group had means significantly higher than both the ES and NES groups. Fake Bad Scale scores were elevated in 11 MCS cases, and regression-based estimates of Fake Bad Scale scores showed elevation in the MCS group compared with both seizure groups. We conclude that MMPI-2 data, obtained from people seeking financial compensation, indicate that there is a strong psychological component to MCS symptoms.
PMID: 16980266 [PubMed – indexed for MEDLINE]
4.Ugeskr Laeger. 2006 Mar 13;168(11):1116-9.[Multiple chemical sensitivity, a well-defined illness?]
Kolstad HA, Silberschmidt M, Nielsen JB, Osterberg K, Andersen JH, Bonde JP, Fink P.
Arhus Universitetshospital, Arbejdsmedicinsk Klinik, Arhus C.
Some people react to smells or chemicals at levels far below toxicological thresholds with nonspecific symptoms, fear and social isolation. They may be diagnosed with multiple chemical sensitivity. There is no empirical evidence indicating that this condition is explained by toxicological mechanisms, even though a number of theories have been proposed. The authors of this review conclude that this is a functional condition. These patients need information and treatment in accordance with this fact. Instead of being advised how to avoid exposure to chemicals, they should be properly trained in appropriate confrontation with the chemicals encountered in everyday life.
PMID: 16545215 [PubMed – indexed for MEDLINE]
5. J Occup Environ Med. 2006 Jan;48(1):76-82.
New aspects of psychiatric morbidity in idiopathic environmental intolerances.
Hausteiner C, Mergeay A, Bornschein S, Zilker T, Förstl H.
Department of Psychiatry and Psychotherapy, Technical University Munich, Munich, Germany
OBJECTIVE: To understand idiopathic environmental intolerances (IEI)-formerly multiple chemical sensitivities (MCS)-it is helpful to outline its characteristic psychiatric morbidity. METHOD: We applied a standardized interview according to the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (SCID) to 305 environmental patients with and without IEI. RESULTS: Somatoform, affective and anxiety disorders were the most frequent diagnoses but only slightly differed between patients with or without IEI. In both groups, current substance-related disorders were rare. We found a clearly higher prevalence of psychotic, especially current delusional disorders, in IEI. CONCLUSION: Somatization, depression, and anxiety are frequent in IEI but nonspecific. Psychotic disorders are more common in IEI than in other types of environmental illness. It appears worthwhile to study personality and cognitive style to explain the pivotal features of IEI.
PMID: 16404213 [PubMed – indexed for MEDLINE]
6. Responses to panic induction procedures in subjects with multiple chemical sensitivity/idiopathic environmental intolerance: understanding the relationship with panic disorder.Tarlo SM, Poonai N, Binkley K, Antony MM, Swinson RP.
Gage Occupational and Environmental Health Unit, University of Toronto, Toronto, Ontario, Canada.
Idiopathic environmental intolerance (IEI), also known as multiple chemical sensitivity, is a clinical description for a cluster of symptoms of unknown etiology that have been attributed by patients to multiple environmental exposures when other medical explanations have been excluded. Because allergy has not been clearly demonstrated and current toxicological paradigms for exposure-symptom relationships do not readily accommodate IEI, psychogenic theories have been the focus of a number of investigations. A significantly higher lifetime prevalence of major depression, mood disorders, anxiety disorders, and somatization disorder has been reported among patients with environmental illness compared with that in controls. Symptoms often include anxiety, lightheadedness, impaired mentation, poor coordination, breathlessness (without wheezing), tremor, and abdominal discomfort. Responses to intravenous sodium lactate challenge or single-breath inhalation of 35% carbon dioxide versus a similar breath inhalation of clean air have shown a greater frequency of panic responses in subjects with IEI than in control subjects, although such responses did not occur in all subjects. Preliminary genetic findings suggest an increased frequency of a common genotype with panic disorder patients. The panic responses in a significant proportion of IEI patients opens a therapeutic window of opportunity. Patients in whom panic responses may at least be a contributing factor to their symptoms might be responsive to intervention with psychotherapy to enable their desensitization or deconditioning of responses to odors and other triggers, and/or may be helped by anxiolytic medications, relaxation training, and counseling for stress management.
PMID: 12194904 [PubMed – indexed for MEDLINE]
LINKS:
Multiple Chemical Sensitivity: A Spurious Diagnosis
Seeking Modern Refuge from Modern Life
Allergy and Asthma Source 
Good content about allergy. People around the world suffer allergy. Thank you.
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“This may be old news to some, but it bears repeating.”
Why? A bunch of bogus studies intended to perpetuate harm for bunch of people already suffering from an awful disease?
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People are suffering, what these studies show is that MCS is a bogus diagnosis, and they should not be misled into believing they have it and investing time, money, and effort on MCS “treatments” instead of pursuing the real cause of their problems.
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Just as allergies and asthma were thought to be psychogenic before science was able to prove their physiologic natures, so too have the denials of MCS come far too prematurely. Real science has proven a physiological basis for MCS. As with any science worthy of the name, a physiological mechanism has been proposed, it has been studied using animal models (unless you think the animals imagined their illness as well) and has been confirmed with physiological markers. This is science at work.
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The difference between allergies and asthma and MCS is that allergies and asthma actually have decades of scientific evidence documenting their existence while MCS has zero evidence.
Where are your references for these “studies”? MCS proponents like to claim they have so-called studies yet can’t produce them because they know they don’t stand up to critical scientific review.
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“The difference between allergies and asthma and MCS is that allergies and asthma actually have decades of scientific evidence documenting their existence”
Before that evidence was available they were dismissed as psychogenic. AFTER that evidence was discovered they were acknowledged as physical.
“while MCS has zero evidence.”
That’s completely untrue. Even if this were the case it is bastardizing the criteria for somatoform diagnoses, which MCS does not meet. Nevertheless, people continue to use this fallacious interpretation. In light of that, there are those who are in the process of modifying the DSM criteria to prevent this lazy use of psychology (I’m being charitable here in assuming that people are actually making a mistake. The truth of the matter is that many/most of these people are making a deliberate error as they’ve decided a priori that MCS MUST not exist. The glaring clue in many of your noted studies is the use of the term IDI. The only people who use that term are those who are trying to prevent recognition of the illness. Theirs is not an objective pursuit).
“Where are your references for these “studies”? MCS proponents like to claim they have so-called studies yet can’t produce them because they know they don’t stand up to critical scientific review.”
The fact that you’ve turned up these studies while claiming to have never seen physiologically based proofs leads me to suspect that you’re ignoring the latter, because they’re VERY easy to find. Researchers from the 90s have used the discovery of a new class of neurotransmitters (nitric oxide in particular) to come to a greater understanding of the illness. Martin Pall put previous conclusions together into a new whole, which is the accepted explanation for the disease. His work has used animal models of MCS (or were those animals’ illnesses psychogenic as well?) along with other physical evidences along the way. The vicious cycle that he describes includes similar patterns recently found in other diseases such as Parkinson’s, Alzheimer’s, Huntington’s, multiple sclerosis, and more. Genetic predispositions have been found and last year an independent team in Rome found biological markers that confirm Pall’s theory.
There are reams more studies than what I will show here, but this is a start. The first link is to Pall’s website that explains the MCS process and refers to various studies throughout. A number of studies are noted in the bibliography. The second link is to the study that confirmed Pall’s theory.
http://www.thetenthparadigm.org/mcs09.htm
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6WXH-4YY8MW4-1&_user=10&_coverDate=04%2F27%2F2010&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=883b3b2444b7efca5ebfef0758b665e7
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I see how this works: when someone produces the overwhelming evidence in favor of a physiological etiology you delete it and claim it doesn’t exist.
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This site doesn’t delete comments unless they are offensive (since we don’t want to get in trouble with wordpress). If you posted a comment or uploaded something and it doesn’t appear on the site, you should take it up with wordpress.
With regards to the “overwhelming evidence” for Dr. Pall’s theories, I refer you to the recent extensive review of MCS by the Australian Department of Health and Aging, the salient points which I excerpted below and the entire report which I will put up in a future post after the allergy season is over. For those interested, you can read the whole report on:
A SCIENTIFIC REVIEW OF MCS: IDENTIFYING KEY RESEARCH NEEDS
3.1.4 Elevated nitric oxide, peroxynitrite and NMDA receptor activity
Hypothesis: Pall (2002; 2003) hypothesised that the hypersensitivity reportedly experienced
by MCS sufferers can be explained by interconnected, synergistically operating biochemical
mechanisms involving stress-related increases in nitric oxide, the oxidative product
peroxynitrite and increases in the sensitivity of N-methyl-D-aspartate (NMDA) receptors in
the limbic system of the CNS.
This theory suggests that hypersensitivity arises through a limbic kindling/neural sensitisation
process involving short-term stressors such as viral or bacterial infections, chemical exposure
or psychological stress that stimulate NMDA receptors producing elevated levels of nitric
oxide and peroxynitrite. This is followed by cycles of interconnected reactions such as a)
nitric oxide acting as a retrograde messenger and stimulating neurotransmitter (glutamate)
release, leading to increased NMDA receptor activity, b) nitric oxide inhibiting cytochrome
P450 leading to decreased degradation of environmental chemicals, c) nitric oxide reacting
with superoxide to form peroxynitrite which induces increased sensitivity of NMDA
receptors and d) peroxynitrite-mediated increased in blood brain permeability, leading to
increased access of chemicals to the central nervous system.
The chronic nature of MCS is postulated to occur from continued propagation of these
mechanisms. More recent developments of this theory also implicate increased activity of
vanilloid receptors (Pall, 2004; 2007). Differences in symptoms in MCS are explained by
variations in the tissue distribution of these reactions. In putting forward this mode of action
for MCS, the author suggests that MCS would be best treated by agents that down-regulate
nitric oxide-peroxynitrite biochemistry.
Research challenge While this theory has not been refuted, there is no de novo scientific
evidence to support it. For example, given the central role of nitric oxide, peroxynitrite and
NMDA receptors in this theory, the effect of agents that disrupt this biochemistry, such as
nitric oxide scavengers, synthesis inhibitors or NMDA antagonists, has not been investigated
in MCS.
Additionally, this theory implicates hydrophobic organic solvents and organophosphate- or
carbamate-based pesticides as the triggering agents (stressors), but the triggers of MCS
symptoms are diverse and often include hydrophilic solvents such as alcohol (ie. perfumes) or
other pesticides, such as malathion. Indeed, some researchers have shown that alcohols
actually inhibit NMDA receptors (Peoples & Ren, 2002), rather than stimulate. Furthermore,
given that this hypothesis utilises the limbic kindling/neural sensitisation theory to explain the
multiple organ symptoms, this hypothesis draws the same criticisms as the limbic
kindling/neural sensitisation model presented above.
Re: Limbic Kindling Comments:
With regard to levels of exposure necessary for kindling to occur, chemical kindling or timedependent
sensitisation in animals typically occurs in response to pharmacologically effective
doses of chemicals rather than at the low doses alleged to cause MCS in humans. This
suggests that if limbic kindling was part of the aetiology of MCS, a higher prevalence of
MCS would be expected in individuals with higher levels of chemical exposure, such as those
exposed to chemicals in industrial settings, which is not the case (Labrage & McCaffrey,
2000).
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A couple of “salient points” you seemed to have missed are these:
1. The report (which I’ve read) acknowledges that MCS exists. That is clear even in the quotes you used here.
2. The report is dated 2008, while confirmation of Pall’s theory was published in 2010, which is included in one of the links I provided above.
3. The comment about limbic kindling SPECULATES about TYPICAL doese required to produce limbic kindling, using information from a published report from 2000. After that report was published, six genetic factors have been discovered that predisposes people to acquire MCS from the lower doses. This is similar to some smokers may get cancer while others do not. Also since then researchers have discovered that the old concept of the dose makes the poison is wrong. They’ve found that very low doses of toxic substances can cause symptoms that are entirely different than the symptoms of high doses.
Even if this information had not yet been found it does not imply that MCS is not real. That is a faulty logic that betrays standard medical thought.
You also misused my reference to “overwhelming evidence” by applying it where I did not use it. Overwhelming evidence includes Pall’s work and the work which confirms it, animal studies where researchers induce MCS in animals and monitor the biological changes that take place, SPECT and PET scan studies along with lab studies. For a review of this information as it existed as far back as 2003:
http://www.mold-survivor.com/multiple_chemical_sensitivity1.html
One would think it difficult to argue with black and white concepts such as before and after brain scans, but when there is an entire industry fighting against recognition of the illness and injecting diversions such as those that cause confusion about diagnoses and definitions, it’s easy to see why there is the phony “controversy” addressed in the Australian report.
http://users.lmi.net/~wilworks/ehnlinx/mcssiege.htm
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I have no doubt MCS is probably very real in the minds of the people who believe they have it, and even more real in the minds of people like Dr. Pall who profit from these people’s beliefs by selling preparations which are supposed to “cure” it. ( http://www.allergyresearchgroup.com/proddesc/discuss/MartinPallAntioxidantSuggestions.pdf )
The problem with MCS is some people claim it exists, but they have a great deal of trouble defining it, thus (again from the Australian review) “MCS is not recognised as a classified disease identity in any country in the world”.for the following reasons:
• There is no clinical or laboratory evidence of an underlying pathological process in
patients who have acquired this descriptive label, despite many attempts to identify
one over the past 20 years;
• There is a wide spectrum of intolerance/irritation from smells and fumes in the
general population and it is not possible to draw any clear dividing line to delineate
patients who might fall into the category of the proposed classification;
• There are no internationally accepted diagnostic criteria, nor validated diagnostic
tests;
• There are a number of syndromes (i.e. symptom complexes) that appear to overlap
with the clinical features proposed for the category of MCS such as CFS and FM. The
relationship between these entities and MCS syndrome is unclear at present and this
creates difficulty with diagnostic categorisation.
Furthermore, no court of law has yet to recognize the proofs submitted by “clinical ecologists” (who seem to be the only ones who believe in MCS),
see http://www.quackwarch.com
here are a few examples:
Benney v. Shaw Industries, Inc. The court excluded the opinion of Dr. Hildegarde Staninger that plaintiff’s MCS was caused by carpeting and a “bug bomb” as his methodology was unreliable. The court also excluded as unreliable the testing of Dr. Alan Broughton’s laboratory as not the type reasonably relied upon by experts in the field. [No. 93-685-CIT-T-21(A), Middle District, Florida, 1995]
Bernardoni v. The Industrial Commission. The Illinois Court of Appeal upheld a lower court ruling against a womn who had claimed to develop chemical sensitivity while working for a chemical company. The Industrial Commission found that, even if Bernardoni’s current condition of ill-being was causally related to her work environment, there was no basis for awarding permanent total disability benefits. The courts excluded expert testimony from Marsha Vetter, M.D., Ph.D. that Bernardoni was suffering from MCS. The Appeals Court ruled that, “Because the prevailing view is that the medical community has yet to accept MCS as a clinically valid diagnosis, the Commission properly excluded Dr. Vetter’s testimony.” [No. 3–05–0226WC, Illinois Appelate Ct., Third District, 205]
Bradley v. Brown. Two federal courts excluded testimony of Drs. William Rea and Alfred Johnson. The trial court found their methodology anecdotal and speculative. Regarding the general concept of MCS, the court held that scientific knowledge about its etiology has not progressed from hypothesis to knowledge capable of assisting the jury. [No. CIV-H85-958, 1994 WL 199827, Northern District, Indiana, May 17, 1994) affirmed, No. 94-2467, 7th Circuit, Dec 13, 1994]
Mason et al. v The Home Depot U.S.A. The trial court excluded the testimony of Grace Ziem, M.D. after concluding that her methods were based only on her own experience and opinions, without any support in published scientific journals or any reliable techniques for discerning the behaviors and effects of the chemicals contained in Varathane. [283 Ga. 271, 658 S.E.2nd 603, upheld on appeal, March 10, 2008]
Proverbs 26:4, “Answer not a fool according to his folly, lest thou also be like unto him.”
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“I have no doubt MCS is probably very real in the minds of the people who believe they have it, and even more real in the minds of people like Dr. Pall who profit from these people’s beliefs by selling preparations which are supposed to “cure” it.”
So you took just enough time to find that he has consulted with a compounding pharmacy to develop supplements that may help people, but you haven’t been bothered to look into any of the provided scientific information?
So profit making is proof of quackery? Pharmaceutical companies profit from inhalers for asthmatics, therefore, asthma is psychogenic? What you’ve done is ignored the scientific data and any new information in deference to your preconceived, received opinion. I specifically addressed the points you cut-out as the “salient points” and you – once again – ignored the information. I passed on conclusive information of diagnostic tests and you ignore those and refer to . . . COURTS OF LAW?! Since when is science defined in a court of law? As it happens, courts of law all over the land have recognized MCS in civil cases and disability cases, but again, you’ll parrot information from Stephen Barrett, a proven liar who has himself been thrown out of courts of law as being an entirely uncredible source of information.
“Furthermore, no court of law has yet to recognize the proofs submitted by “clinical ecologists” (who seem to be the only ones who believe in MCS)”
I’ve been diagnosed with MCS by three standard MDs who are not clinical ecologists, including one who is a legal consultant for Monsanto in court cases AGAINST people with MCS. As far as Quackwatch goes, it is the project of Stephen Barrett, whose only claim to medical fame is as a psychiatrist who never managed to hold down a full-timie job (pretty remarkable for a physician) and finally let his license lapse. He is on tape lying about a study that was never done by people who don’t exist for a publication that does not exist. He has presented himself in court as a legal expert after having taken a legal correspondence course for a few months without finishing it. He has presented himself as a toxicologist with absolutely zero background in toxicology. The number of otherwise intelligent people who are willing to tie their reputations with this transparent failure is remarkable.
You refuse to engage any of the information presented and instead bring up a man who – guess what? PROFITS FROM DENYING MCS EXISTS!
This is a federal judge’s view of Barrett (when Barrett tried to pass himself off as an expert in FDA regulation and all he could use to support that was a couple of conversations he had with people who work at the FDA):
“It is apparent, therefore, that both men have a direct, personal financial interest in the outcome of this litigation. Based on all of these factors, Dr. Sampson and Dr. Barrett can be described as zealous advocates of the Plaintiff’s position, and therefore not neutral or dispassionate witnesses or experts. In light of these affiliations and their orientation, it can fairly be said that Drs. Barrett and Sampson are themselves the client, and therefore their testimony should be accorded little, if any, credibility on that basis as well.”
This is what Quackwatch is all about. They are a front group. Front groups include obviously true information to lend themselves an air of credibility, then use that credibility to advocate for paying clients. For profit. One of Barrett’s more recent cases was thrown out before it even came to a jury. In his home town.
Your biases are clear and they are not based on science. As for a biblical quote, I will use a commandment that you are directly violating:
“Neither shall you bear false witness against your neighbor.” You are willingly repeating lies about people to their harm.
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I would like to hear more of your side of MCS, I for one think that is very real. My daughter who’s 16 with no prior major illnesses and most definitely no history of mental illness or behavioral problems has been dealing with this for over a year now after a low level long term chemical exposure…most likely leading to limbic kindling and neural sensitization. Now she has seizures when exposed to certain chemicals.
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@sherrywade: There is no scientific evidence to support that MCS exists, much less cause seizures. Can you tell us who diagnosed your daughter, on what basis, has she seen any neurologists, and what tests have been run on her?
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Please stop equating asthma it with MCS, it indicates lack of information and education. Asthma is a well defined, SCIENTIFICALLY documented disease which MCS is not (see previous posts). Dr. Pall sells “cures” to people with ill defined problems, “cures” which have no proof of efficacy. Know what these type of people are called? Snake oil salesmen, and there seem to be a lot of them. (see latest post on http://allergyasthmasource.com/ )
Your argument can not be taken seriously unless you name your sources. Please name the 3 “standard MDs” (whatever that means) who diagnosed you with MCS. (If one of them is Kalpana Patel, talk about raking it in she made $30M doing what Dr. Pall is trying to do, see
http://scienceblogs.com/insolence/2007/06/thars_gold_in_that_thar_chelation_1.php ) and cite your references on the cases you mention.
It does not help your case to trash talk Stephen Barrett, all the quacks and snakeoil salesmen hate him, so think of the company you are keeping.
I don’t know what these other physicians have told you, but you may have an actual real problem that has been misdiagnosed as MCS and I urge you to consult with a board certified Allergy- Immunology specialist preferably in an academic center to get another perspective. Many patients given the CFS, Lyme disease, MCS diagnosis make it such a part of their identity that they feel insulted whenever the diagnosis is questioned. It is not your fault if you were misdiagnosed and misinformed. However, it would be your fault if you close your mind to other options because you are so attached to their misdiagnosis. Stop wasting your time and hard earned money on questionable treatment.
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She has had a full work up, and we can trace every single instance back to a chemical exposure, be it perfume cleaners, air fresheners or actual products that contain formaldehyde which is her initial trigger. And I wasn’t trying to get your opinion because obviosly you have NOT done your research on the matter DOC… I wanted to talk to brainfan more about his findings and knowlege.
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@sherrywade: Has your daughter had blind challenges with these alleged chemicals? Unless her seizures can be documented with blinded exposures with placebo, I would not be so quick to attribute her seizures to MCS. The fact that you are not open to other opinions reveals your bias. If you truly want to help your daughter, I hope you will seek the opinion of knowledgeable neurologists who specialize in seizures.
That being said, the purpose of this site is to promote evidence based medicine, which MCS sorely lacks. If you wish to conduct your with others who share your beliefs, then please feel free to do so elsewhere.
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“Please stop equating asthma it with MCS, it indicates lack of information and education. Asthma is a well defined, SCIENTIFICALLY documented disease which MCS is not (see previous posts).”
Follow me on this please: BEFORE the medical field had the ability to define and understand asthma, it was viewed as psychological. The same goes with allergies. The same goes with multiple sclerosis, which still does not have a diagnostic test and for which we still do not know the cause. This is precisely where MCS was two decades ago, but it has now been confirmed by animal models (how do animals become sensitive to chemicals?), and it is demonstrated in brain scans, information about which I have supplied to you and you have obviously ignored. How does a brain scan showing a clear before and after images from chemical exposure lead you to turn your head and insist it must be something else?
“Dr. Pall sells “cures” to people with ill defined problems, “cures” which have no proof of efficacy.”
1. Show me a link to where Dr. Pall claims he has a cure.
2. He is on to a biological understanding of the illness. He has an overwhelming number of people begging for something that will help them. He’s trying to offer something that will help. I’ve communicated with him myself and he is anything but a snakeoil salesman and promises nothing. He makes it clear that his treatments are still theoretical. He makes it clear that avoidance is still a necessary part of treatment.
3. Professional testing is very expensive. Pall is trying to raise the money to pay for these tests. Since the inevitable cause of MCS would damage chemical industry profits, the chemical industry spends a lot of money lobbying against government funding for tests. Since these companies are owned by or otherwise affiliated with pharmaceutical companies, the latter will not fund them. Until then, many sufferers will try anything in the hope that they’ll find improvement, whether it be Pall’s treatments or the numerous scams that are out there. The presence of these scams and the tendency for people to try them is not an argument against the fact that people have the illness.
“Know what these type of people are called? Snake oil salesmen, and there seem to be a lot of them. (see latest post on http://allergyasthmasource.com/ )”
I like that: you go from Dr. Pall with a link to . . . a place that talks about someone else. Who doesn’t even do anything with MCS, yet you tie her in directly with Pall:
“Your argument can not be taken seriously unless you name your sources. Please name the 3 “standard MDs” (whatever that means) who diagnosed you with MCS. (If one of them is Kalpana Patel, talk about raking it in she made $30M doing what Dr. Pall is trying to do, see
http://scienceblogs.com/insolence/2007/06/thars_gold_in_that_thar_chelation_1.php ) and cite your references on the cases you mention.”
I’ve included links to the information that Pall has written. You have chosen to respond with a smear about him selling supplements to a clearly limited population with a correspondingly limited potential income. Since that income and the paucity of information to support your smear, you instead turn to a different person treating a different illness.
Cut and paste my quotes if you want to have an answer about an allegation. As far as my physicians go, I’m speaking of mainstream physicians with small practices, not some mansion-dwelling celebrity. It’s amusing that you think of this Patel person; it shows that you have a fantastical concept of MCS based on the smear sites you frequent (and yes, I’m familiar with Orec’s site).
It’s interesting too that all of the snakeoil salesmen are always outside of the medical mainstream, yet the medical mainstream is renowned for its catastrophic drain on our economy. The implicit claim of skeptics is that anything alternative must be tested with double-blind testing and if it is not, it must be assumed to be a scam. This ignores the fact that the British Medical Journal is in the process of studying the efficacy of mainstream medical interventions. At last count (checking 2,500 interventions), a full 51% had an unknown efficacy. From the remaining 49% are those with negative, probable, and positive efficacies. I’m not using this as an argument to dismiss mainstream medicine in favor of alternative medicine, because I don’t. I’m just using it as a way of laying all the cards on the table.
As it happens, my arguments CAN be taken seriously if you were truly a skeptic rather than a denialist. You obviously frequent places who like to consider themselves scientifically-oriented, yet who come to conclusions long before science has even had a chance to thoroughly study the subject at hand. You are being suckered by your own snakeoil salesmen, those who sell a product to an industry that profits far more than the occasional quack like Patel.
“It does not help your case to trash talk Stephen Barrett, all the quacks and snakeoil salesmen hate him, so think of the company you are keeping.”
I don’t hold global views based on any “company that I keep”. I am willing to defend my sources (Pall) where you clearly are not (Barrett). You are the one who brought Barrett up. His paper, “MCS: A Spurious Diagnosis” is so poorly written, it surprises me that anyone would include him in a consideration of the illness.
“I don’t know what these other physicians have told you, but you may have an actual real problem that has been misdiagnosed as MCS and I urge you to consult with a board certified Allergy- Immunology specialist preferably in an academic center to get another perspective.”
You are making a lot of assumptions about me. You have come to a conclusion about my illness before you even heard me tell you anything about it. This is not science; it is not medicine; it’s a desire to hold onto one’s convictions that were arrived at without having explored the story.
I had this condition for years before I ever heard of MCS. When the cause of a patient’s complaints are not immediately known, his doctor embarks on a plan of ruling out illnesses. I’ve been to a highly respected allergy-immunologist. I’ve been to highly respected neurologists. Psychiatrists/psychologists. I am a registered nurse who worked in a major hospital for decades. I had regular contact and professional associations with highly respected physicians of numerous fields, who themselves had their own associations which they used to help me. When describing this condition, the worst response I had was an unfamiliarity with the condition. Most acknowledged that they understood the possibility. While going through my cardiology work-up I described my MCS to him. He said his wife has it too, though milder. The doubt about MCS is manufactured. It is the same as the tobacco industry’s famous quote, “doubt is our product.” As long as there is doubt, there is an avoidance of responsibility.
I have tests that demonstrate problems with various organs. These conditions fit in with the MCS disease process. I fully understand the concept of primary and secondary diagnoses. These diagnoses are secondary to MCS. It fits into a picture that is well-established, contrary to the stories you hear from elsewhere.
“Many patients given the CFS, Lyme disease, MCS diagnosis make it such a part of their identity that they feel insulted whenever the diagnosis is questioned.”
If a person is in a wheelchair, his affliction IS part of his identity. If someone tells him to get up and walk because his condition is doubted, he has every right to take umbrage. Just what is it that offends you about the idea that MCS is a real physiological ailment? Have we come to a point where we have such an intimate familiarity with human anatomy that we cannot find new things we don’t know about? You continue to claim that this might be some vague mythical ailment when you have scientific and medical data staring you in the face.
“It is not your fault if you were misdiagnosed and misinformed. However, it would be your fault if you close your mind to other options because you are so attached to their misdiagnosis.”
Again, you know nothing about my condition or how I arrived at this diagnosis. You are ruling out a diagnosis based on what you’ve read elsewhere. I hardly need to tell you that this is far beyond a rational approach to a medical condition. I spent years trying to figure out why I was suffering symptoms before I realized they were from chemicals, and then years more before I even heard of MCS. Finally, after having specialists put their hands up saying my condition did not fit into their diagnoses, I found a diagnosis that fits like a glove.
“Stop wasting your time and hard earned money on questionable treatment.”
Whoever said I was wasting money on treatment? I only use treatments prescribed by MDs based on lab tests that are covered by insurance. As far as wasting time goes, I’d waste a whole lot more time (plus money on co-pays) by continuing to chase physicians in the hope of finding the elusive mainstream diagnosis that others have yet to find. I belong to social networks with a lot of fellow MCS sufferers; don’t you think we’ve been through this before?
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Sorry to disagree, but as far as I can tell, there is no serious evidence proving the existence of MCS staring at me or anyone else. There are a lot of theories and associations which are far from solid evidence, and certainly nowhere near the evidence similar to that which prove the diagnosis of allergies and asthma.
Just curious, what treatments are you using? and what was the result of the evaluations by the Allergists, neurologists, and psychiatrists?
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Great site and thanks for the info
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So I guess you are one of the so called “Doctors” who is on the side of the money and the chemical industry lobbyist who don’t want all of us unsuspecting citizens to know what we REALLY have in all the products we use in our homes and in the products we use on out bodies. AND yes if you had read my statement she has had a full work up by a neurologist.
DONT ever disrespect me or my intententions to help my daughter, obviously you DONT have kids or else you would know people will go to the ends of the Earth to help their kids. You are most likely NOT even a real doctor.
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Interesting how MCS advocates resort to throwing out insults instead of arguing the scientific evidence. It is the purpose of this site to give people scientific, evidence based guidance on allergic and immunologic disease. Most reasonable people with a loved one with a serious disease would want to focus their time and money on treatments with at least some science behind them, not on vague, unvalidated, often expensive “therapies”.
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EXCUSE ME! But you insulted my intelligence when you talk to me and others the way you do, like I said IF you are a real DOCTOR back it up, send me an email with your pic and your state in which your licensed in and then maybe I would give you the benefit of the doubt. I personally have over 20 years of medical experience so I’m not some idiot! I have done thousands of hours of research on the computer and HAVE found things to help my daughter when no “dcotor” she has seen has. So YOU tell me where a lab is that will actually do all these double blind studies because no one I have been to knows squat OR even tries to help!
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Which state is your daughter located? I can suggest a few places if you give me her location and the results of her previous lab work-up.
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Texas near Houston, like I said she’s had CT, EEG, blood work, Spinal Tap, MRI, eval. by epiletologist, and neurologist.
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And were there any abnormal findings?
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NO that’s why I’m here and anywhere else I can find to get answers.
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Pardon all the questions, but I’m trying to figure out the entire picture. So, if the EEG and CT scan were normal, how was the diagnosis of seizure disorder made and who made it?
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Your daughter may not necessarily have epilepsy, but may have other conditions that mimic epilepsy, some points in the history are clues to thiis
(I am including medical terms since you said you have a medical background)
The following information should be obtained in the history:
Record the patient’s age.
If a family history of seizures is noted, determine the clinical epilepsy syndrome of the affected family member.
Ask about a history of any previous provoked seizure.
Determine if the first seizure was status epilepticus.
Ask the time of day of the seizure occurrence.
Determine whether there is a history of postictal confusion, incontinence, and occurrence out of sleep.
Consider other paroxysmal neurologic events and identify seizure mimics, such as syncope, transient ischemic attack, transient global amnesia, migraine, sleep disorder, movement disorder, and vertigo.[27]
In syncope, several historical features can be helpful. When an accurate description is missing (eg, unwitnessed event), the distinction between syncope and seizures can be difficult, because it is based on history alone; however, several symptoms are helpful in aiding the diagnosis.[26, 28] These include the circumstances of the attacks, because the most common mechanism for syncope (vasovagal response) is typically triggered by known precipitants (eg, pain such as inflicted by medical procedures, emotions, cough, micturition, hot environment, prolonged standing, exercise).
Other historical features that favor syncope include “presyncopal” prodromes (eg, vertigo, dizziness, lightheadedness, chest pain, nausea), as well as age and a history of cardiovascular disease. Historical features that favor seizures include tongue biting, head turning, posturing, urinary incontinence, cyanosis, prodromal déjà-vu, and postictal confusion
*Aside from syncope, have other Metabolic medical disorders, such as uremia, hypoglycemia, hyponatremia, and hypocalcemia which can also trigger seizures been ruled out?
Disease states and conditions often misdiagnosed as epilepsy include the following:
Convulsive syncope: Decreased cardiac output causes reduced cerebral perfusion with loss of consciousness and convulsive motor activity. Scheepers et al reported that cardiovascular disease was the most common diagnosis among patients whose conditions were initially misdiagnosed as epilepsy.[1] Using a comprehensive battery of cardiovascular tests in a population of patients diagnosed with epilepsy, Zaidi et al reported alternative diagnoses in 41%.[34]
Transient ischemic attack
Transient global amnesia
Paroxysmal vertigo
Panic attacks
Migraine
Sleep disorders, parasomnias, non–rapid-eye movement (REM) parasomnias (eg, night terrors, sleepwalking, and confusional arousals), REM behavior disorder, cataplexy (part of the narcolepsy tetrad, consisting of an abrupt loss of tone), hypnic jerks (ie, benign myoclonic jerks)
Paroxysmal movement disorders, including acute dystonic reactions, hemifacial spasms, and nonepileptic myoclonus
Psychogenic nonepileptic attacks: These are the most common conditions at epilepsy monitoring units, comprising more than 90% of misdiagnosed adult cases and more than 50% of cases in children.[32]
So, it is important to rule out all other possible etiologies before settling on a diagnosis such as MCS. Anyone who doesn’t encourage you to seek real medical care and at least rule out other etiologies but instead just wants to promote their unproven theories and pseudo-treatments has their own agenda and is not looking out for your best interest as a real health care professional should.
The best place nearby to get your child evaluated is probably at Baylor Hospital (see info below)
Baylor Comprehensive Epilepsy Center
Department of Neurology
Baylor College of Medicine
Smith Tower, 18th Floor
6550 Fannin, Suite 1801
Houston, Texas 77030
Tel: 713-798-8259
Fax: 713-798-7561
Dr. Eli Mizrahi is the pediatric neurologist and chair of the Neurology department.
As I’ve said before, having a child or loved one with a medical problem is stressful, difficult, and expensive. At the very least, one should pursue evaluations and treatment with scientific evidence and documented benefit, instead of wasting your effort and cash on vague unvalidated theories and therapies.
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@Sherrywade, This site does not give medical advice, it aims to provide general guidance to people who are sincerely looking for scientific evidence-based guidance on allergy and immunology issues. Anyone who thinks they can get medical care on the Internet should have their head examined. If you want medical advice, go see your doctor. Bringing up FEMA, benzene, the earth being flat, and dinosaurs etc. has nothing to do with the dearth of scientific evidence supporting the existence of MCS, and does not persuade anyone.Regarding “thinking out of the box”, if I might offer some non-medical advice, “Don’t keep your mind so open that your brain falls out.”
In fact, you seem a little too interested in looking for anonymous people on the Internet than listening to anything this site has to offer. I wonder why you persist in returning to this site. That is your choice. I, on the other hand, choose not to engage in arguments with people who clearly have attached themselves to a shaky belief system and in an effort to validate it, go trolling on the Internet looking for people to agree with them.
I only hope this rather bizarre discussion helps others who come to this site honestly looking for evidence based answers to their questions.
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The allergy unity at the Royal Prince Alfred Hospital in Australia accepts the existence of MCS. There’s even a short section in the back of their widely circulated elimination diet book about it. The book emphasizes the concern that some people following a very limited diet may find their chemical sensitivities increase.
http://www.sswahs.nsw.gov.au/rpa/allergy/
As you can see by the web address. This is a government funded public hospital.
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Submitted on 2012/04/19 at 10:02 am | In reply to hixxy.
Please see new post on Australian Dept. of Health and Ageing 2010 report on MCS
https://allergyasthma.wordpress.com/2012/04/19/australian-department-of-health-and-ageing-report-on-multiple-chemical-sensitivity/
The Executive Summary states:
1. The underlying mode(s) of action of MCS, i.e. the biological mechanisms by which the chemical sensitivity occurs, remain uncertain.
2. Although non-specific neurological symptoms are common, overall there is no characteristic symptom profile that identifies MCS.
3. Presently, a diagnosis of MCS is based commonly on self-reported symptoms and chemical exposure histories. The symptom profile of MCS is indistinguishable from other multi-symptom disorders. No laboratory tests currently exist for diagnosing MCS.
4. There are no standardised treatments for MCS.
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Furthermore, you can see on the staff page:
http://www.sswahs.nsw.gov.au/rpa/allergy/staff/default.cfm
Chemical sensitivity listed as a special interest.
Many allergy departments and pediatricians take their lead from this particular allergy department in Australia. I actually got my RPAH book from a local allergist on the Gold Coast in Queensland.
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Please see new post on Australian Dept. of Health and Ageing 2010 report on MCS
https://allergyasthma.wordpress.com/2012/04/19/australian-department-of-health-and-ageing-report-on-multiple-chemical-sensitivity/
The Executive Summary states:
1. The underlying mode(s) of action of MCS, i.e. the biological mechanisms by which the chemical sensitivity occurs, remain uncertain.
2. Although non-specific neurological symptoms are common, overall there is no characteristic symptom profile that identifies MCS.
3. Presently, a diagnosis of MCS is based commonly on self-reported symptoms and chemical exposure histories. The symptom profile of MCS is indistinguishable from other multi-symptom disorders. No laboratory tests currently exist for diagnosing MCS.
4. There are no standardised treatments for MCS.
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This says nothing regarding the validity of the disease. All it pretty much says in each point you posted is “we don’t know”. All diseases go through this stage at some point in time.
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Untrue, it is naive to say that “all diseases go through this stage at some point in time”, maybe only early in their historical course. MCS/ IEI has been around for at least 20 years, and by this time there should be more verifiable data out there but there isn’t. This study is the only one that demonstrates any provocation of symptoms and it is related to saline infusions.
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“Untrue, it is naive to say that “all diseases go through this stage at some point in time”, maybe only early in their historical course.”
The end of your statement confirms what the author said.
“MCS/ IEI has been around for at least 20 years, and by this time there should be more verifiable data out there but there isn’t.”
Since when is there a finite time placed on how long it should take? How long did it take for “verifiable data” to come out for ulcers? FAR longer. How long did they “exist”? How about allergies and asthma? They existed FAR more than 20 years before “verifiable data” came out. Which begs the question: verifiable for whom? Verifiable for denialists who peddle their product of hubristic ignorance while the true medical pioneers work quietly in the background.
“This study is the only one that demonstrates any provocation of symptoms and it is related to saline infusions.”
That is a lie, pure and simple.
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Your post makes clear who the “denialists” are. This blog does not aim to argue with anyone but merely presents scientific evidence based information and lets the reader make up their own minds. FYI, both peptic ulcers and allergies/ asthma have been recognized as disease entities for decades, pathology and treatment have been evolving. The difference is MCS/ IEI can’t even be established as a disease entity because the symptoms are so variable from patient to patient,subjective, and non-specific. Equating it as a disease entity with ulcers and allergies/ asthma is quite a stretch.
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Ugh!
There is no clear testing for the disorder and others similar because the research has no funding, no money for the funding interests
The most likely path enacted upon during these reactions is the Tyrosine pathway (and several of its detours). So of course there will be psychological anomalies to go along. IN fact if anyone really cared they could read several good research papers on sepsis and see the connection between the psyche and ailments…
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I will right away seize your rss as I can not to find your e-mail subscription hyperlink or newsletter service.
Do you’ve any? Kindly let me understand so that I could subscribe. Thanks.
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Such an imsvsepire answer! You’ve beaten us all with that!
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