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MCS Letter To Oprah

Photo: Katy Winn/Getty (Source: Huffington Post)

Today I read this:

This weekend, let’s all send a message to Oprah about Multiple Chemical Sensitivity

I then decided to write in to Oprah regarding multiple chemical sensitivity (MCS) as per Monique van den Broek’s request on Susie Collins’ The Canary Report.

Bearing in mind that there is a 2000 character limit when writing to Oprah (and anyone who reads this blog knows how challenging it was for me to keep it to 2000 characters), here is the letter I sent today to Oprah regarding multiple chemical sensitivity (MCS) :

Dear Oprah,

My name is Jeanne. I have multiple chemical sensitivity (MCS). I’m in the U.S. & was diagnosed in ‘92. I have many other chronic illnesses including 1 that has resulted in 7 surgeries. However, at this point in my life, the illness that has the biggest impact on me daily is MCS. I can’t pump my own gas. Mall trips are a thing of the past. Toxic fragrances emanating from stores with candles & bath/body products make me get dizzy, nauseous, feel faint, have trouble breathing, etc. & make it too dangerous for me to be in a mall. My husband does the grocery shopping because the detergent aisle alone makes me so sick. “Air fresheners” have become ubiquitous in public places like rest rooms. (Due to my other chronic illnesses, I have a need for rest rooms more than most people; these “air fresheners” are a serious problem)!! These products contain toxic fragrances unregulated by the gov’t & known to contain carcinogens, neurotoxins, and/or endocrine disruptors. Fabric softeners contain many toxins & there are times I have to step away from a person whose clothes are so coated in fabric softeners and/or detergent that I become ill simply from standing next to them! Some MCS patients have a definitive light bulb moment where they know their MCS started. Others, like me, had a more gradual onset. I’ve been chronically ill since I was 13 years old; I’m now 41. I think my body was vulnerable to developing MCS due to the nature of pre-existing chronic illness plus exposure to medications & environmental factors that acted as triggers. I have severe reactions to exhaust fumes, commercial cleaning products, “air fresheners”, perfumes, cigarette smoke, etc. With the devastating oil disaster in the Gulf, there will sadly be more & more patients getting MCS. Already there have been cleanup workers who’ve sought medical care for MCS symptoms. Many MCS patients are housebound or homeless. This serious illness needs attention!

Thank you,
Jeanne

Readers here most likely know that what I meant when I said “Due to my other chronic illnesses, I have a need for rest rooms more than most people; these ‘air fresheners’ are a serious problem)!!” was that illnesses such as interstitial cystitis, endometriosis, and irritable bowel syndrome require me to use rest rooms more frequently than most people.

So, aside from becoming housebound by my MCS (a possibility which I try not to think about even though I know it could happen to me), that means that I get exposed to even more of those toxic “air fresheners” than an average person would. The last thing I need is to be inhaling “air fresheners” . However, if I am out and about… rest rooms are not optional. So, I continue to be exposed to these on a regular basis and it makes me furious.

Do you have MCS? Perhaps you don’t have an MCS diagnosis but you clearly have some issues with chemical sensitivity? Will you write to Oprah to draw attention to MCS?


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: MCS Letter To Oprah

18 comments

1 AmandaNo Gravatar { 07.05.10 at 3:55 am }

Hey Jeanne,

what a great post! I’ve never watched Oprah (I’m not even sure it is airs on any of the main channels over here?) but I know *of* her show and how big an audience she does have, so I do hope that these letters will help raise a lot of awareness for MCS!
.-= Amanda´s last blog ..Preparing for a Sale =-.

2 Matthew SmithNo Gravatar { 07.05.10 at 1:42 pm }

This whole trend of “air fresheners” being used in public lavatories has caught on here in the UK too. The things they spray out (in a burst every ten minutes or so) really has a strong and quite unpleasant smell.

I suspect they’re not just used as “air fresheners” but as anti-germ agents, on account of some people’s insistence on relieving themselves and not washing their hands afterwards. I don’t know about ladies’ loos but I’ve so often seen men walk out of the room without washing their hands, even with water, let alone soap (and don’t get me started on liquid soap that doesn’t wash off with even gallons of water). Perhaps a large part of the reason is to sanitise the surfaces in the room; it certainly doesn’t get rid of any strong smell of unhygienic material.

People need to be educated to wash and dry their hands; a lot of nasty germs are spread by not doing this (germs love wet environments). There are all kinds of bacteria and viruses (including the Coxsackie virus family which is a known cause of M.E. among other things) which are spread in body products. Public toilets must also have covers and people must be educated to put these down when flushing, as a mist is otherwise released, containing these same germs.

3 JeanneNo Gravatar { 07.06.10 at 12:55 am }

Amanda,

Thanks! Really? Wow, I thought Oprah was on TV in practically every country at this point… but apparently not where you live. This Oprah letter-writing campaign was started by a woman Monique van den Broek of the Netherlands. I saw about it on Susie’s site. Goodness knows I have written to Oprah many times over the years, for many reasons (I once heard she has the #1 (biggest) daytime TV audience worldwide or something to that effect). So, I know she gets millions of letters. However, when I saw that this was an organized appeal for people to write in on 7/3 and 7/4 regarding multiple chemical sensitivity (MCS), I figured it couldn’t hurt to try. (Amanda, I’d give anything to get endometriosis patients as well-organized and into writing in, signing petitions, etc. as MCS patients are)!! I’m well aware that getting through to Oprah is one of those “way against the odds” scenarios. However, “canaries” (MCS patients) are so numerous and so well-organized/vocal that I seriously thought it was worth a shot to add my voice to the chorus and try to get more people to join in as well. We’ll see what happens. It can’t hurt to try! ;) There certainly is no guarantee Oprah’s staff will notice even an MCS “blip on their radar” — but not even trying guarantees they won’t. It’s worth a try!

Jeanne

4 Jannie FunsterNo Gravatar { 07.07.10 at 11:13 pm }

That is an AWESOMELY-worded letter to Oprah, Jeanne. I hope she reads it and it goes far, as it should. The more word, the better. An organized appeal cannot be underestimated.

MCS is so hard to go through. I do not suffer from it much, but I know it is real and very debilitating for so many of you.

Peace and love,
Jannie
xo
.-= Jannie Funster´s last blog ..“Today I Am Not” — a poem celebration =-.

5 JennNo Gravatar { 07.07.10 at 11:52 pm }

Strength in numbers! It’s a fantastic idea & it really could work. I so respect your efforts Jeanne. I wish more endo patients would think big & organize. I think we’ll get there! Especially with dedicated bloggers like you on our side. :)

Wow, I thought Oprah’s show had reached every corner of the world.

6 JeanneNo Gravatar { 07.08.10 at 3:00 am }

Matthew:

Oh, please don’t even get me started on the “air freshener” topic. I’m sorry to hear that rest rooms in the UK are being poisoned with toxins as well. I have no doubt that you are correct that the companies making and marketing these heinous chemicals do present them as having beneficial qualities such as “disinfecting” the air to “kill germs”.

Unfortunately, the spraying of toxins into the air does not do anything for the problem of people who do not practice good hygiene in the form of basic hand-washing. (The idea of people not washing their hands is another “don’t get me started” type of topic).

As far as the notion of “freshening the air”, I don’t know how it is in the UK but in the U.S. there are frequent commercials on TV for various “air fresheners” for the home (including ones that plug into electrical outlets to disperse the toxins more widely… after all, why not waste electrical energy on our precious planet while we spew poisons in buildings?) [Insert sarcasm here].

Essentially, the marketing amounts to brainwashing in my mind. The way things are marketed here… the general public is truly brainwashed to believe that their homes must “smell clean” to be clean (with “smelling clean” translating to smelling like commercial – toxic/fragranced – cleaning products… another “don’t get me started” topic).

Even if the “air fresheners” found in public rest rooms really were effective at killing germs, creating indoor air pollution with them (with everything from carcinogens to neurotoxins to endocrine disruptors) would not help the fact that some people don’t exercise common sense and wash their hands. Having been in plenty of “ladies’ loos”, I can assure you that there are plenty of women who don’t wash their hands either. Very gross! No toxic spray will help that problem. People need to exercise some common sense.

So, yes, people need to be educated to wash and dry their hands to keep everyone as safe and healthy as possible. (Heck, doesn’t the average preschooler have this concept down? I just don’t get it).

As far as I understand it, there have been lots of things associated with ME/CFS but nothing has been found to be causal (including XMRV). If Coxsackie were the cause for ME, I would think that there would be a test, research money, and probably pharmaceutical drugs available.

I have lived with endometriosis for 28 years and I have seen many theories for what causes it. While many things have been associated with endo or correlated to it, there is not, as of yet, a proven cause. So, I tend to be careful about the “cause” word regarding any chronic illness.

Yes, people really do need to be more careful about prevention of the spread of germs. Some people just don’t seem to really think about it much. Over the years, I have seen people go to work or family gatherings when they are clearly sick with something contagious. Rather than stay home and get well (for the benefit of all), too many people go on about their business. In doing so, their bad choices expose others (most especially those with compromised immune systems and/or chronic illnesses) to germs that can lead to viruses that trigger flare-ups of their chronic illnesses, greater odds of contracting what they’ve been exposed to by that someone who really belonged home in bed until they were no longer contagious, etc.

Jannie:

Thank you for your kind words. Honestly, I would have worded the letter much more carefully if I had more than 2,000 characters to do so (providing lots of supportive links to sources of relevant information and such. However, I tried to hit on a few key examples of how MCS affects my everyday living.

Even if Oprah never lays eyes on it, I think that getting lots and lots of people online to write in on a given weekend like that is good in many ways. The more people talk about the letter-writing campaign online, the higher the search engine optimization. The higher the SEO, the more people will see it. The more people who see it, the more awareness gets created. So, whether Oprah’s producers look at it or not, I think an organized letter-writing campaign like this is worth doing/creates awareness. It can’t hurt!

MCS is hard. There is no doubt about that. While you may not have severe MCS, I know you have a better understanding than the “average person” of how debilitating it can be.

Peace and love back to you, Jannie! xo

Jenn:

Yes, strength in numbers indeed! Thank you for your always positive feedback. I wish that endometriosis patients could get as organized and motivated to take action as other patient populations (such as MCS patients or ME/CFS patients). I’m not sure why endometriosis patients, as a whole, aren’t more organized than they are. Certainly with 89 million patients (conservative estimate) having it worldwide and the fact that there are many more additional endo patients living with it but not-yet-diagnosed allows for enough people – in sheer numbers – to speak up collectively. Unfortunately, for a variety of reasons (which I won’t get into conjecture about now), endo patients just aren’t as organized (in my opinion) as some other patient populations.

Gosh, Jenn. I feel a post coming on. A post pondering why endo patients aren’t more organized. Hmm. I’ll have to think on that one. Anyhow, thank you for your kind words. I am happy to have you “on my side” speaking up for the endometriosis cause.

Yes, I thought Oprah had gone worldwide by now. Apparently, there are pockets where that is not the case.

Hope your surgery recovery is going well!

~~~

Jeanne

7 JennNo Gravatar { 07.09.10 at 3:48 pm }

Hey again Jeanne!

I’ve been thinking about it…some reasons why we aren’t more organized. I’ve got a few to share.

First, Endo is still so widely unknown & misunderstood. I can’t believe how many people I meet who have never, ever even heard the word, let alone know anything about it. Women & girls everywhere could easily be confused into thinking that their symptoms are just normal period-related issues. In my experience, many gynecologists don’t even know the truth about it (which is really, REALLY scary!).

Second, there is still a stigma attached to talking about your (GASP) menstrual cycle. This is true on a large scale & all the way down to personal relationships. We are taught to be embarrassed or ashamed our periods. It seems to me that we are also taught to hate our periods.

Third, symptoms of Endo can be mild for some people. Or they affect women a few days a month, not every day. We suffer through those days & move on. I’ve had Endo for 10 years (at least) & I didn’t make talking & blogging about it a priority until my symptoms reached excruciating pain levels on a daily basis. And I suffered through countless, horrible days over the past ten years. (And I mean SUFFERED). I think because I knew a better day was just around the corner, it made it tolerable. But looking back, I really wish I would’ve started getting involved & educated much sooner.

Maybe this is one of the reasons why MCS patients are so well-organized, because (what I have learned from you is) triggers are everywhere & the consequences are so terrible. It’s imperative for you to spread the word because it negatively affects your life in many uncontrollable ways.

Anyway, those are just a few thoughts running around my head. I know there are many more than three reasons, but these are the first three that came to my mind. I hope we can remove the stigma, raise awareness, dispel myths & raises our voices together to create change. I am so happy to have found this online Endo community & believe we can make a difference together. I am inspired by the MCS community & hope Endo sisters can learn from your/their example. I could fill a book with my Endo story & hope to do just that one day. I want to do all that I can to help.

Thanks for starting this conversation!

8 JeanneNo Gravatar { 07.16.10 at 11:37 pm }

Jenn,

I am very sorry for the delay in posting your comment. There are several factors behind this delay. One (of many) is that I have had an entire post about this subject brewing in my head for a long time (or even a series of related posts) and I was honestly hoping to reply to this comment of yours with a “my feedback on this topic won’t fit here so please refer to my xyz blog post about it”. Unfortunately, that post has not yet transpired. So, in general terms, let me say thank you for the excellent points you raised and I appreciate your patience with my far-slower-than-usual pace at posting your comment!

The quickest possible summary I can summon up about this topic is that I watch other patient populations that are more organized and better “mobilized”, so to speak, than endometriosis patients, as a whole, tend to be. Many of these patient groups have odds just as daunting that could prevent them from “getting organized” but they find a way to do it anyway.

So, I guess that I would give anything to see endometriosis patients banding together in like fashion. I will get into more detail of what I’m talking about when I finally do post about this long-overdue topic that has been nagging at me for awhile. For right now, the bottom line from where I’m standing is that when I compare the activism/patient advocacy level of typical endometriosis patients and compare it to patients with other chronic illnesses… I personally think there is room for improvement in the endometriosis segment of patients. To be clear, I am not trying to sound like I am criticizing or judging anyone and I personally feel that I need to find a way to do more than I am regarding endometriosis. I’m just frustrated because I believe there are some untapped opportunities for endometriosis patients.

Thank you very much for your great feedback and I hope to pull together a post as soon as I get a chance. The last couple of weeks have been very hectic!

Jeanne

9 Matthew SmithNo Gravatar { 07.18.10 at 1:24 pm }

Hello again Jeanne,

Enteroviruses such as Coxsackie have been an established cause of at least some cases of ME for many years. As for why a whole lot of public money isn’t going into researching it, there is virtually no public money going into researching the cause, or for a cure, for ME anywhere in the world, including here in the UK. In fact, public money in the UK has been wasted on pointless studies into psychological “treatments” for so-called CFS/ME, a lot of which are in fact harmful (CFS/ME is the name preferred by those who think ME isn’t a real illness, however they disguise their views, and they are dominant in treating people with ME in the UK). All the research into the medical aspects of ME, be it viruses or genetics, is privately financed. Jane Colby suggests that this is because it’s not a dramatic an illness as polio was, with its rows of people in iron lungs, even though it’s a devastating long-term illness, particularly in its severe form.

There has actually been some research into enteroviral causes, notably by Dr John Chia at the Enviromed foundation in California (XMRV is being pushed by another private institute, the Whittemore-Petersen Institute in Nevada). Enteroviruses are not easy to isolate in a living subject; poliovirus was mostly recovered from deceased subjects.

10 JeanneNo Gravatar { 07.19.10 at 11:55 am }

Hello again Matthew,

I’m pressed for time and unable to post a reply quite as detailed as I would like but I would like to get your comment posted. So, I’ll post an abbreviated response to your comment (a comment which raised several issues).

While this post was about multiple chemical sensitivity, I don’t mind veering off-topic a bit more… since ME/CFS is an important topic. However, I just want to be mindful of the fact that this post was intended specifically to spread awareness about MCS.

That said… Cause is a very loaded word. For something to be linked or associated to a particular illness is one thing. For something to be considered a cause is another.

According to this New York Times article:

Stephan Monroe, director of the C.D.C.’s division of high-consequence pathogens and pathology, said the agency believed that infectious agents could be one of many possible triggers for the disease but that no pathogen had yet emerged as a “primary cause.”

Please note that the article above was published in the United States and uses the naming convention CFS. That is not a naming convention I ever use myself (even though I am in the U.S.) Without getting into a lengthy comment regarding naming convention, I always refer to it as ME/CFS… as do many people who wish the CFS terminology never entered the vernacular… but that is a separate (and very loaded) issue.

Thank you for your feedback.

Jeanne

11 AmandaNo Gravatar { 07.19.10 at 12:59 pm }

Oooh I missed the “people washing their hands” debate… ack.

Having worked in a couple of nurseries and becoming obsessed by cleaning my hands and surfaces (not great with all the chemicals but better than letting the bacteria spread from pre-school kids who didn’t wash their hands properly to the tiny babies) I hate it when people who should know better don’t take more care not to spread bacteria, such as in touching handles and things after being to the toilet and not washing their hands. Tim is just as obsessive, having worked in the local hospital on a very acute care ward…

I can now be found carrying a little bottle of that “no soap, no water needed antibacterial gel stuff” that you squirt on your hands… again, I have no idea how good this stuff is for me and the environment, but sometimes when I am out and about it feels like washing my hands with soap and water after being to the toilet isn’t enough, because I will then go on to touch plenty of surfaces that aren’t clean and with a weakened immune system I do not like subjecting it to more chances of getting sick than I have to. It is a difficult one, choosing between using something that might not be great chemically but protects me more from bacteria… so, say I’ve been out and I want to sit and have a snack, I will use the gel to refresh my hands before touching the food, for example.

I guess my question here (and whole reason for writing this comment) is – am I right in my thinking that using this gel is better than not using it? I mean, what are the chemicals used in it and how harmful are they? I use this stuff a lot and it would be good to weigh up the pros and cons… and as this is an MCS post I think it is a good place to ask :)
.-= Amanda´s last blog ..Life at the Patch – week 12 =-.

12 Angel MacNo Gravatar { 07.19.10 at 6:39 pm }

@Matthew~ May I speak for the estimated 1-4 Million in the USA with what WE refer to as ME/CFS, and that is not because we are putting ME down, it is because we have ME but the USA (CDC) does not feel that ME can cross country boundaries and refuses to use the correct Definition here, so we have been using it because we “know” we do not have what the CDC defines as CFS, but we have ME so we “intentionally merge” the two names and have done this for years. It’s not our fault if the Psych’s in the UK are now picking it up and trying to twist the meaning against us. On both sides of the Atlantic the Psychs have tried to twist this thing, but our bodies & symptoms “know” we have ME, so Please stop “believing” the blather of the Psychs.

Also, the WPI is not “pushing” XMRV ~ That was what their Scientific Research “along with” The Cleveland Clinic and The National Cancer Institute all “confirmed” and was peer reviewed and then published in the Highly respected “Science” last Oct. Their research showed a link. Until other studies that will soon be published, that actually use the same methods, Replicate this ~ then it is only considered a “link” and no one has said it is the cause~ yet. In addition, no one to date has used their same testing methods which took them a long time to complete, not 1-2 months. So I challenge your comment about “all research is Private” because the NCI is a .gov site under our National Institute of Health (NIH) which is under the DHHS (Dept of Health and Human Services) with it’s leader currently being Sec. Katleen Sebelius, part of Pres. Obama’s cabinet. And the NIH/FDA (again .gov sites) will soon be publishing a paper.
So can we please Agree to realize that the Psychs of BOTH the USA and UK do not believe this disease is biological no matter what name you give it, and that WE the patients “know” we have a disease that has biological roots, and unless we the patients STOP quibbling over names and “Stand United” against those that are trying to maintain that this is a psych disease, we will be defeating ourselves. Let the real Science Research that IS being done speak for itself.

13 JeanneNo Gravatar { 07.20.10 at 2:56 am }

Amanda:

Yes, (for benefit of other readers) you know and I know that you mentioned (on another post) the chemicals you were exposed to at that job in the past. I’m sorry you were exposed to all of that. Obviously, working at a job like that necessitates lots of hand-washing. I honestly don’t understand why some people don’t wash their hands. It’s such a common sense thing.

As a multiple chemical sensitivity (MCS) patient, I have gotten to know many fellow patients who cannot tolerate the type of hand sanitizer you referenced. I have even heard of MCS patients who cannot access certain public buildings because some places in the United States have taken to installing “hand sanitizer stations” in public places. (Different MCS patients have different degrees of sensitivity. I have always steered clear of these products myself). These dispensers have been in some grocery stores (such as in small dispensers that are mounted by the meat department) for several years. I’m guessing my aversion to these products might be similar to your discomfort with plastic that we’ve talked about before.

I am acutely aware that many of my fellow MCS patients wouldn’t be able to walk past these without a reaction. :( I keep my distance once I spot something like this. However, I realize that someday such a station might cause me the very same type of reaction that fellow MCS patients already have.

I recently went to a concert where there were stand-alone “hand sanitizer stations” (standing about 3 feet high which converts to 0.9144 m) in the lobby of the theater. This new (new to me, anyway) concept captured my attention but I didn’t think to take a picture of it. (I should have). I should note that there were rest rooms just a few short feet away from where this nearest “station” was set up.

I gazed at the “hand sanitizer station” and wondered to myself, “why?” This was not the “canary”/MCS part of my brain, necessarily. It was just the part of my brain that wondered what the logic was for this station. I should mention that the rest room nearby had the most “air fresheners” I’ve ever seen in one public rest room. Seriously, this was a one stall rest room and it had no less than 3 “air fresheners” and 1 can of “hospital strength” disinfectant spray in that small room. I’m guessing that the same person who stocked that rest room to the brim might have had a hand in installing the first stand-alone “hand sanitizer stations” I’ve ever seen anywhere.

I have never used hand sanitizers. When they first came out and became popular, my main reason for not using them was that I didn’t like the idea of the germs (dead or alive) staying on my hands. I know that you were not talking about using hand sanitizers instead of hand-washing but in addition to. Unfortunately… there are many people out there, I’ve noticed, who do look at it as a replacement).

I don’t know what the ingredients are in the hand sanitizer you use but I avoid products that say “antibacterial”. The following link is about antibacterial soap (as opposed to hand sanitizer) but you had said that what you use is “antibacterial”. So, I thought I’d include this link. Anyway, note too the mention of dioxin in the link below:

Antibacterial Soap Danger Still a Hot Topic

I avoid ingredients such as triclosan (that are in any number of products now). When I purchased an insulated lunch bag about a year ago, I had quite a time finding one that did not say either “antibacterial” or “antimicrobial” on it. There is no way I was going to buy a lunch bag treated with such chemicals. Finally, I found one without them.

While that link was talking about antibacterial soap (versus hand sanitizer), the part about dioxin caught my attention because I have been reading for years about how extremely toxic it is. You may have heard about the research involving dioxin and endometriosis:

Scroll to bottom for information about dioxin

“Research by the Endometriosis Association revealed a startling link between dioxin (TCCD) exposure and the development of endometriosis. Dioxin is a toxic chemical byproduct of pesticide manufacturing, bleached pulp and paper products, and medical and municipal waste incineration. The EA discovered a colony of rhesus monkeys that had developed endometriosis after exposure to dioxin. 79% of the monkeys exposed to dioxin developed endometriosis, and, in addition, the more dioxin exposure, the more severe the endo”.

Source: Endometriosis Association

While the research above concerns endometriosis, there is evidence that dioxin also causes many other health problems even at low levels. More information about dioxin is in the link below:

National Academies Confirms Dioxin Dangers, Finds deficiencies in EPA review process

Whether there is any dioxin in the product you use as a hand sanitizer, I don’t know. Please forgive my dioxin tangent but when it popped up as something found in antibacterial soaps, it got my attention. I try to avoid dioxin as best I can. (I fully realize that food and soil get contaminated with it thanks to air and water pollution), as per the above link.

Anyway, I don’t mean to digress. It’s hard for me not to get fired up when I come across anything related to dioxin because it is so very toxic. Bear with me for one last link about dioxins following this quote from that last link:

“Sometimes described as the most toxic contaminant ever found, dioxin has been linked to multiple outbreaks of disease and cancer triggered by high-level exposures at least as far back as 1949″.

Trigger alert for infertile readers for this next link:

EPA Must Finish the Job of Protecting People from Dioxin

I understand your concerns about having a weakened immune system. Honestly, with your history of exposure to chemicals at work (among other things), I wonder if using these products might be doing you more harm than good. Personally, I’d be worried about any residue of hand sanitizer on your hands if you are eating, say, a sandwich or something else that you’re holding with your hands. Who knows what antibacterial products might be leaving a residue on your hands that could be unhealthy? That’s my personal take, anyway.

In addition, when I came across links today (after reading your comment here) about both children and adults who had actually become intoxicated from ingesting hand sanitizer, it hit home just how much alcohol these products tend to have in them.

My personal opinion is that the risks of using the gel (especially given your health history) might actually outweigh the benefits. Again, I am not familiar with the ingredient list of the specific product you’re using but if I were a betting woman, I’d bet that you’d be better off without the hand sanitizer.

If you are using these products a lot and are not aware of what is in them, I’d suggest taking a look at the ingredients. My understanding is that the alcohol-based products are actually flammable. (One site warned not to store them in a car because of heat, for example).

I did a quick search on The Canary Report about hand sanitizers and a few posts came up. None seemed to be an entire post about this topic. However, one of them outlined how a college’s chemical engineering professor spoke up on behalf of MCS patients. In a letter to the editor, hand sanitizers were one of the products he mentioned as problematic for MCS patients:

Professor of chemical engineering urges students to go fragrance-free

As far as what hand sanitizers contain, ingredients apparently vary… but typically they are alcohol-based. Here is a story about ingestion of it by an adult. (It’s a snippet from a longer article. I didn’t join to view the entire article as I got the idea from the “intro”):

The New England Journal of Medicine: Intoxication of a Prison Inmate with an Ethyl Alcohol–Based Hand Sanitizer

I also encountered stories today that talked about young children putting their hands in their mouths before the product was dry and becoming quite ill as a result…

“A little 2-ounce bottle (of hand sanitizer) = 4 shots of vodka” ~~ Dr. Sanjay Gupta

Full article, for context, here (including some interesting comments):

Hand sanitizer risks

The fourth comment down (the one that starts, “As a microbiologist…”) caught my attention because it talks about what hand sanitizers do/do not do and also brought up the topic of alcohol drying out people’s hands which can result in cracks. (See link above for full comment).

Anyway, sorry to carry on about these topics so much but while investigating how best to reply to your comment, I found an enormous number of links that I thought you’d find interesting.

My personal opinion is that the companies that market such products seem to often play on people’s fear of germs to sell their products. I’m all for advances and new inventions in general but I’ve seen enough (on TV reports), read enough and heard enough to have formed my opinion that things were going just fine before these products hit the market. With various reports on the potential dangers of these products (for the general population) combined with what I have learned upon immersing myself in the online MCS community, I wonder if these products truly do society more harm than good. I’m well aware some people swear by them but they’re just not for me.

Jeanne

14 JeanneNo Gravatar { 07.20.10 at 4:04 am }

@Angel:

Thank you for clarifying that the ME/CFS naming convention is not meant to put anyone with ME down in any way… and for explaining about how the Centers for Disease Control (CDC) in the USA has done a disservice to patients with that dreaded “CFS” (“Chronic Fatigue Syndrome”) label. I find myself feeling it necessary to put those quotes around it because I always call it ME/CFS and never simply “CFS” (despite the fact that I, like you, am in the USA). With all of the uproar over what definition, criteria, and naming convention is to be used, I completely understand why so many people (including hard-core ME/CFS advocates – who are often ME/CFS patients like yourself) use the name “ME/CFS” as that “intentional merge” you referred to re: the name.

I agree that the fact that doctors in various parts of the world have been known to try to paint ME/CFS as some sort of psychosomatic illness is just plain wrong and that whatever name one chooses to call it, ME/CFS is not a psychogenic illness.

Thank you for providing details regarding the various bodies involved in research pertaining to ME/CFS. I know that you spend an enormous amount of time working to stay up to speed on the daily ME/CFS developments (and they truly have been daily lately, haven’t they?)

@Matthew:

I was not able to give the type of point-by-point response I am accustomed to giving earlier but would now like to expand on what I had said then.

Please understand that a statement like this:

“CFS/ME is the name preferred by those who think ME isn’t a real illness, however they disguise their views, and they are dominant in treating people with ME in the UK)”

… can really get many people stirred up. I understand that there may be people you know or in your area who use “CFS/ME” as some sort of means of dismissing patients as having a psychogenic illness or somehow marginalizing them. Please understand that (having read several of your blog posts and comments), I do not think you intended to offend anyone. In all honesty, I must admit that I personally was taken aback by the above comment because, as I’m sure you’ve noticed on my blog, I myself refer to the illness exclusively as ME/CFS. That is intentional and purposeful on my part. I do not ever “disguise my views”. I use the ME/CFS naming convention on purpose… as do many people around the world. Again, I do not believe you intended to lump me (or others like my friend Angel) in with people you know who use “CFS/ME” as some sort of derogatory name for the illness.

Please also understand that there are millions of patients, like Angel, who are diagnosed with “CFS” simply because they reside in the USA… when that naming convention is, well, bogus.

As I mentioned in a previous comment on this thread, there is a difference between a “link” or “association”… and a “cause”. The New York Times article I posted above addresses the “cause” terminology. Also, I am fully aware of the harmful “treatments” that so many patients with ME/CFS have been “ordered” by their doctors to perform. I don’t think anyone would dispute you that this is sad and wrong.

You noted that “there has actually been some research into enteroviral causes”. I never stated that there has been no research into such potential causes. There is a big difference between a potential cause and a proven cause. That is what I was trying to express in a previous comment.

You also commented as follows:

“XMRV is being pushed by another private institute”

I have to concur with Angel’s objection to the word “pushed”. That word makes what WPI is doing sound derogatory. (I know from reading your blog that I’ve never seen you express any sentiment against WPI but this comment on this thread was worded in such a way as to potentially be misunderstood by people who are not familiar with your writing). As Angel mentioned, the Whittemore Peterson Institute isn’t (my words here) ramming their agenda down anyone’s throats without evidence to back up what they have announced. I don’t know how familiar you are with The Cleveland Clinic but it is a very widely respected medical center. For WPI, Cleveland Clinic, and the National Cancer Institute to all be on the same wavelength re: XMRV is huge. I don’t begin to present myself as any sort of “expert” on ME/CFS. Far from it. I do know, though, from a wide variety of sources, that Angel is correct about the fact that the XMRV “breakthrough” was peer reviewed and then published in “Science”. Like Angel, the word I use for that connection is a “link”. There are many people around the globe who are extremely excited about the XMRV breakthrough but who still use words like “link” rather than “cause”… for now at least.

As I mentioned previously, “cause” is not a word I use lightly. The studies Angel mentioned that are “soon to be published” are ones you may have heard about. These are the FDA (Food and Drug Administration) and NIH (National Institutes of Health) studies that a large number of people believe were about as close to publication as one can get before the CDC (Centers for Disease Control) intervened (and subsequently published its hard-to-believe report).

That is a massively loaded topic that has been lighting up the Internet ever since news first leaked in June that the FDA and NIH had replicated the XMRV findings. As much as loads of people are pulling for this research to be published ASAP and as many ME/CFS patients as there are out there losing sleep over the delay (quite literally), the CDC’s “research” released recently (going on memory, I think on July 1st) has thrown a monkey wrench into things. It is unfortunate that the CDC, as an entity, seems so hell-bent on insisting that the XMRV research cannot be replicated. Again, that’s a super-loaded topic (straying further still from the topic of this post… multiple chemical sensitivity).

As Angel mentioned, there is research being conducted by agencies affiliated with the government of the United States.

If you have not yet noticed the XMRV petition in my blog’s left sidebar, you might be interested in checking it out.

—–

Thank you both very much for your feedback.

~~~

Jeanne

15 Matthew SmithNo Gravatar { 07.20.10 at 6:36 pm }

With regard to the whole hand sanitiser situation, this is another “don’t get it in my food” thing – one time I was about to order some food at a particular stand in my home town, and I noticed that the guy “sanitised” his hands by squeezing some blue gel onto them, and didn’t bother washing his hands but kept on handling food. I walked right away and never ordered from that stand again while he was on duty.

I had cause to blog about this a few years ago when there were some media reports that Muslim doctors in the UK were refusing to use this type of gel because getting the alcohol on their hands was against their religion. I immediately smelt a rat because doctors use chemical alcohol all the time; there are different schools of thought followed in different parts of the Muslim world and the one followed where most of Britain’s Muslims come from don’t consider chemical alcohol to be impure. They are more likely to have objected, if at all, to the gelling agents (glycerine is commonly derived from animal fat).

I have a couple of friends who are doctors and I contacted one of them who told me that he had worked in a hospital in south-eastern England and knew of an incident where an outbreak of the notorious hospital infection or ‘superbug’ Clostridium difficile was exacerbated by these anti-bacterial gels: the reason is that they kill the weaker pathogens, leaving the strong to survive, and sooner or later the gels can’t stop them. The hospital decided to stop using the gels and go back to soap and water. Other doctors refuse to use the gels because they have a very drying effect on the hands, and needless to say that’s not a religious issue.

About the ME/CFS naming issue, perhaps I should have been clearer because ME/CFS and CFS/ME are used by different groups of people and have different connotations. When I said that “CFS/ME is the name preferred by those who think ME isn’t a real illness etc.” I meant CFS/ME in that order. ME/CFS is more likely to be used by patients and advocates. While according to some patients, CFS just shouldn’t be used at all, ME/CFS at least has the advantage of being distinctive and getting articles on ME out of search engines (if you search for M.E. or “severe me” you will find articles on M.E.; searching for ME, or even M.E., in combination with other words, Google will strip out the dots and you are likely to find any document with “me” along with the other words you searched for, and not much on M.E.).

16 Angel MacNo Gravatar { 07.20.10 at 7:31 pm }

Hi Jeanne,

Let me also clarify that even Suzanne Vernon that use to work at the CDC, but now works for the CFIDS Assoc Of America has declared that the CDC recently published paper “was NOT meant to look for XMRV”….. so duh..
it was not mean to be a replication paper.. and none of the other places that have done recent papers have used the “culture test along with patients with the Canadian Definition.” Mind you ~ the CDC is aware of ALL of this and was even sent samples of XMRV and the proper test methods last October from WPI.. so they either lost them OR….
and didn’t use patients that fit the correct criteria.
as far as I am concerned they haven’t done anything but proved AGAIN what a bunch of bumble-heads they are and they had NO intention of testing for XMRV…

It was also questionable that the Head of the CDC- dept that studied CFS that after years of complaints by the patients to the CFSAC meetings (under the NIH/HHS)
who finally was transferred OUT of the CFS Dept and is now in the Mental Health Dept had his name on the recent paper..kinda shows ya where he and his UK counterpart ~ Weasely, as we call him over here, were looking…

*cheers*
I also notice the difference that those of us that have ME and use the label ME/CFS are using it differently than those in the UK that are of the psych persuasion calling it CFS/ME… so that can be something to watch for to know the source.
.-= Angel Mac´s last blog ..73 CDC-XMRV not paper WPI responds =-.

17 JeanneNo Gravatar { 07.21.10 at 2:41 am }

@Angel:

It really is a shame that the CDC simply does not appear to have a vested interest in doing what’s in the best interests of the patients. Yes, I know about the samples being sent to the CDC. There are so many aspects of this illness that get thrown into the “controversy bin”. So much time and energy gets wasted on these “sideshows”.

What I mean by that is that even things that should be straightforward aren’t. With controversies (for lack of a better word) over what the illness is to be called, the fact that several post-WPI XMRV studies have not used a culture test/patients with the Canadian definition, all of the tragic cases of ME/CFS patients getting mis-diagnosed as having psychosomatic issues, etc… it’s just messy!

Yes, that job transfer is interesting given the circumstances, isn’t it?

I did notice the order flip between CFS/ME and ME/CFS in Matthew’s comment and did figure (before his comment back) that he was talking about it that way (as he did clarify in his subsequent comment here). I just really wanted to make sure than anyone who happens to read this post understands why I use the term ME/CFS.

You captured that perfectly in your previous comment. The idea of “intentional merge” is key for many people I know. I agree, though, that everyone who is speaking/writing about the illness should try to bear in mind that the context/geographical location of the person speaking can certainly affect the terminology they use.

@Matthew:

Yes, the bottom line for me is that soap and water is effective. My personal comfort level is to stick with that. If there are any peer-reviewed studies out there showing that hand sanitizers and antibacterial soaps have improved public health, I haven’t seen them. However, I have seen many stories questioning the safety of antibacterials and the hand sanitizers have the issues already discussed above. So, they are not for me.

I think the introduction of these products and the aggressive marketing of them (I’ve seen sample bottles of hand sanitizers in little baskets on the check-out counter at doctor’s offices, for goodness’ sakes) has made things unnecessarily complicated. Some hospitals insist that staff members use them. Others do away with them and go back to soap and water… I won’t even get started on the super-bug business. For me, the bottom line is that soap and water works.

I understand that the naming convention used often varies based on who is speaking and where they are from. My primary concern is to promote awareness without alienating anyone (regardless of what diagnosis name they have… which can be determined by where they live). I know that some patients don’t like to hear the letters “CFS” at all. I also know that some patients who have been diagnosed with “CFS” quite literally don’t even understand what ME is.

I have an in-person friend who told me years ago that she has “CFS”. It wasn’t until I was educated by various ME/CFS advocates about the naming convention controversy (followed by a slew of reading up on this on my part) that I realized me simply saying “CFS” could truly offend some people. I also realize I can’t please everyone no matter what name I use.

Many people I care about have taught me the importance of keeping the focus on the best interests of ME/CFS patients. My perception of their belief on one way to do so is to “intentionally unite” the name as ME/CFS so as not to alienate any of the patients suffering with this serious illness (or minimize the odds of alienating anyone as best I can).

While I understand that there are some who disagree with the ME/CFS naming convention, I use it consistently because I believe precious energy and time can be wasted in debates about the name… energy and time that could be spent on much more important things things like ME/CFS research.

Again, I do understand that you were referring to the use of CFS/ME (in that order) by some people (whomever they may be) as a means of dismissing patients or, let’s face it, denying them the right to get closer to the day when effective treatments and even a cure will be available. I totally get the tragedy about people getting “sectioned” in the UK (Hint for readers: that’s like being institutionalized in the USA) because they have the illness and are labeled as having a psychosomatic condition.

I understand what you’re saying about search engine optimization as well.

Thank you again for the feedback, everyone.

~~~

Jeanne

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