The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Something that REALLY bothered me at the IACFS conference

Discussion in 'General ME/CFS News' started by Boule de feu, Sep 24, 2011.

  1. Boule de feu

    Boule de feu Senior Member

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    Before I start, let me say that I am very thankful for the hard work and commitment from the organizers,and associations that were involved... I will never say it enough: THANK YOU! :)
    ME needs to get world-wide recognition and without any doubt, all the ones involved ARE working very hard to get that.

    However, there is one thing that really bothered me during this event. I hope nobody will be insulted - it's not my intention to criticize anyone - I just want to see if it could have been avoided.

    While we were waiting for the next speaker to come up front, a lady walked right in front of us. She was wearing a very strong PERFUME!!! I can't imagine it was a patient or a carer... It looked more like a student (future doctor, maybe?). I have a very difficult time explaining how someone who is attending a conference on CFS could not be aware that many of us are suffering from MCS. I was doing fine before this happened. Once exposed, I could not think anymore, my cheeks were flushed, I started perspiring profusely, I had a runny nose, my throat became tighter, and the severe nausea kicked in. I was dizzy. The lady next to me got worried. I started wondering if i should leave. Fortunately, the young lady left (maybe because someone had told her it was a flagrant-free event? I sure hope so.)

    Later, that afternoon, i found out that Staci Stevens (Vice-President of IACFS and speaker - Activity intolerance) was wearing a mask because of MCS. There were a few other patients as well. I was pretty angry at myself that I had not thought of bringing mine... :-( When Stacy mentioned that the choice of a "newly-renovated" hotel was not a good choice, I yelled: "and it should have been perfume-free!". Fortunately (or unforunately?), I don't think anyone heard me... :-(

    Maybe it could be mentioned on the registration site next time? CFS event - "perfume-free" registration.

    It was my first CFS event. It was my first real outing since March 2006. I don't regret going (so many good speakers and caring people!) but after Thursday, i realized that I am still too fragile to spend long hours in public spaces. I think i'll wait a bit more before going to another one.

    P.S. By the way, Cort is more handsome in real life. ;-)
     
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  2. LaurelW

    LaurelW Senior Member

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    I think this should be right on the registration forms, in very big, highlighted letters. This is a no-brainer.


    "P.S. By the way, Cort is more handsome in real life. ;-)"

    and a lot taller, too.
     
  3. Boule de feu

    Boule de feu Senior Member

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    Did i write FLAGRANT-FREE? LOL
    I'm sure i typed fragrance, well maybe it was flagrance... Darn IPad! It changes your words without you knowing it! LOL
     
  4. Boule de feu

    Boule de feu Senior Member

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    I was going to say that too...
     
  5. ukxmrv

    ukxmrv Senior Member

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    Sorry to hear about the perfume. It's common for CFS events to be advertised as fragrance free so I am surprised that either it wasn't or she didn't know. I keep a mask in my bag (it has charcoal over the nose/mouth part) for when I can't get away from perfume. Glad she left!

    Hillary Johnson said about the hotel in a tweet

    http://twitter.com/#!/oslersweb

    oslersweb Hillary Johnson
    Hotel under renovation. Ozone machines set up in corridors to counteract new carpet VOC outgassing. MCS folks--be happy you're not here.
     
  6. Boule de feu

    Boule de feu Senior Member

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    Too bad I was. LOL
    Everyone who has MCS will probably crash after this.
    Oups! I should have said everyone who has CFS... ;-)

    I saw the two machines running and I thought they were pretty efficient. Too bad they did not have one in the ladies' room... after lunch...
    (I'm too funny!)
     
  7. Dreambirdie

    Dreambirdie work in progress

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    Fragrance is Poison. People should really know better than this.

    So sorry that you had an exposure to it, Boule de feu.
     
  8. Boule de feu

    Boule de feu Senior Member

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    used to have very severe MCS, but now it's not as bad. Actually, I thought it was almost gone and this is why I did leave my house.
    The funny thing is that when the lady besides me saw that I was having an "allergic" reaction (is it the right word?), she said she could not smell it. It took her a little while longer. But, by then, it was too late for me.
    I wonder how other patients reacted to it. Have patients complained before? Were some of you bothered by perfumes in other conferences or symposiums?
     
  9. Dreambirdie

    Dreambirdie work in progress

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    My MCS is so bad that I can't be around anyone who uses any kind of fragranced products, including most commercial shampoos, laundry soaps and cosmetics. This makes it impossible for me to go anywhere in public, except the health food store, which is usually a "safe" place. I never go to conferences or symposiums. That would do me in for a big crash.
     
  10. Boule de feu

    Boule de feu Senior Member

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    What are your symptoms when you are exposed? Are there similar to mine?
     
  11. Dreambirdie

    Dreambirdie work in progress

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    At first I feel dizzy and my sinuses get stuffy. This can happen after just one or two sniffs of exposure. If I stay beyond that point, which is usually just a minute or two, I begin to feel nausea. If I stay longer still, I become very wired, my pulse becomes rapid and my mind races, which inevitably ruins my sleep for the night, and often gives me a nasty headache. After the wired feeling wears off, I crash and feel exhausted and flu-ish.

    No surprise why. The chemicals in many commercial products are neurotoxins and endocrine disruptors.
    I found some relevant info to share below.


    This is from Mercola: "The Cancer Prevention Coalition has previously warned that consumers are being exposed to fragrance ingredients that may cause cancer or fetal, hormonal or reproductive problems. But these fragrance ingredients are still unregulated they don't even need to be listed on the label.

    The ramifications of this lack of regulation are fairly obvious. According to Science Daily, about 20 percent of Americans suffer adverse health effects from air fresheners, for example. And sensitivity to perfumes and other kinds of fragrances is a very common problem." http://articles.mercola.com/sites/a...oducts-emit-unlisted-hazardous-chemicals.aspx


    "The most extensive I have encountered comes from Mary Lamielle, the president of the National Center for Environmental Health Strategies, who in a 1990 press release lists the following symptoms induced by fragrances: watery eyes, double vision, sneezing, stuffiness, allergic rhinitis, sinusitis, tinnitus, dizziness, vertigo, coughing, bronchitis, difficulty breathing, chest tightness, asthma, anaphylaxis, headache, migraine, cluster headaches, seizures, convulsions, fatigue, confusion, disorientation, incoherence, short term memory loss, anxiety, irritability, depression, mood swings, rashes, hives, eczema, flushing, muscle and joint inflammation, pain and weakness, irregular or rapid heartbeat hypertension.2" http://www.environmentalhealth.ca/w9495harmful.html

    Here's some more research on fragrances: http://www.feingold.org/Research/fragrances.html
     
  12. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I'm not Dreambirdie, but I can attest to the same kind of reaction you had, Boule de feu. I'm so sorry this happened to you. When we have to live in our safer bubbles, after a while, we forget how dangerous it is "out there"! In our family, although we've told people we can't tolerate fragrances, they still don't understand that the fabric softener scent clinging to their clothes, the lotion they use, or their deodorant can be a big problem. Most people think those of us with MCS just don't like "smells" or that we have an allergy. Sometimes it takes more energy than I have to try to explain. I hope you make a quicker recovery than expected!
     
  13. Boule de feu

    Boule de feu Senior Member

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    Interesting stuff.
    This is the same Mercola who does not believe in CFS?
    Maybe he has changed his mind?
     
  14. Boule de feu

    Boule de feu Senior Member

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    If I'm exposed (gas, perfume, detergents, strong deodorants, fabric softener, etc.), I end up being so sick. It took me a long time to figure out why. I thought these "problems" were ME symptoms and I had no control over them. I'm still working on food intolerances. I'm starting to figure out what I can and can't eat.
     
  15. Dreambirdie

    Dreambirdie work in progress

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    I don't know where he stands on ME/CFS. But I do get a lot of good info from his newsletters.
    I pick what works, and disregard the rest.
     
  16. Gamboa

    Gamboa Senior Member

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    Hi all,

    I have just spent the last 4 days at the conference. On day 3 I sat behind a male doctor, no name will be mentioned, who was wearing some kind of cologne. Fortunately I don't react like many of you but I found the smell awful and had to move. He was in his sixties ,I would guess ,and you think he would have known better.

    It is too bad about the state of the hotel. I can only assume that the organizers who booked the event were not aware it was going to be under renovation at the time. Or worse, there is so little money in ME/CFS that this was all that we could afford!

    Hi Boule de feu: Sorry I didn't get to meet you. I didn't think there were going to be so many people there. I imagined there would be about 30 of us and that we would all get to meet each other. I did get to meet Cort, Dr. Mikovits, Richvank, and others so all was not lost.:D
     

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