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Measures Taken by 11 European Countries for Multiple Chemical Sensitivity (MCS)

Discussion in 'General ME/CFS News' started by Dolphin, Jun 20, 2010.

  1. Dolphin

    Dolphin Senior Member

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    http://nofun-eva.blogspot.com/2010/06/measures-taken-by-european-countries.html
    or
    http://www.scribd.com/doc/33130608/MCS-Danish-Questions-2010

    There are responses from the following countries:

    -------
    I'm afraid I can't resist pointing out that the NICE guidelines on "CFS/ME" might have had something if it was not for the Barts (=Peter White) submission on the draft guidelines. Make sure to read the titles of the references!

    http://forums.aboutmecfs.org/showthread.php?t=1757

    ====================================
    For more of the Peter White/Barts submission, follow the last link in my .sig
     
  2. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    lol!
    __________
     
  3. Galena1

    Galena1

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    South West UK
    Some household cleaners cause a burning sensation in my mouth and swelling of the lips that is extremely unpleasant and the same effects with some of my partners hand creams, but only sometimes. Impossible to know when/if it will affect me so they are now 'banned' substances. Same thing can happen any where, any time, with a wide range of chemicals, including washing powder.
    "potentially remediable condition through a graded exposure programme" I'm not entirely sure how you can apply graded exposure to something so hit and miss and variable. Perhaps I should start by 'snorting' a very short line of washing powder and work my way up to a whole box:eek:
    Whose to say that graded exposure won't do more harm than good to bodily systems?
    The way I see it is - My body reacts badly to a 'normal' household chemical and this is a 'warning' . This tells me that, because most people don't share my negative response, the problem lies within my body. Surely it would be better to trace the problem. A lousy example but...you smoke your first cigarette and it makes you cough (a negative reaction). You smoke more and eventually your body gets used to it and you don't cough. You have, effectively, applied 'graded exposure' but clearly whilst you may no longer cough, the price you pay physically is a high one. I'm rambling:Retro smile: definitely time for a cuppa!
     
  4. Dolphin

    Dolphin Senior Member

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    No, it is useful.
    They claim this and other graded programs are "safe". However, even if one can build up ones activity levels (most people don't seem to achieve this), if this involves a lot of oxidisation (as our "antioxidant system" does not work well) and release of other chemicals, it might not be "safe" even though the problem isn't visible.
     
  5. IamME

    IamME Too sick for an identity

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    Genuine MCS needs to be distinguished from sensory intolerance (wich can be serious in itself). An MCS charity said that as many as 90% of people who claim to have it don't but actually have sensory intolerance.

    I'm not sure how you tell the difference, maybe MCS needs phyical signs like rashes, swelling etc -- sensory intolerance probably doesn't. I don't know if MCS fluctuates much or can go into remission but sensory intolerance can.

    I have sensory intolerance but I don't think I have MCS, because I only react to chemicals that are blatantly obvious (ie powerful scents), with the possible exception of some drugs. If I was exposed "blinded" to something or other, I don't react. So that's another test I suppose. Like most pwME I have abnormal sensitivies to some drugs though, getting severe and/or unusual side effects that are almost independent of dosage.

    The point of this is, that PDW might be seeing cherry-picked patients with conditioned sensory intolerance or non-conditioned cases with remission that he attributes to CBT (naturally :rolleyes:). I know my sensory problems are not conditioned because my own sensitivity fluctuates markedly at times with no change in behaviour from me, is worse when other external factors drag me down overall, and when the intolerance comes back it's almost instantaneous and by surprise.

    It used to annoy me whenever I spoke about sensory overload and other people would say "oh do you have MCS", nevermind people more recently saying they've cured sensory overload with CBT/GET/LT/EFT/TLA/graded bog snorkelling or whatever. Sometimes it's okay and bad enough to have sensory intolerance that's not caused by conditioning.

    There was a US documentary a few years ago on euthanasia and a "doctor death" like character, in it was some woman with MCS who took over his work, which meant flying and going into unfamiliar properties. I couldn't help thinking that was the sort of thing someone with MCS wouldn't do. (Incidentally there was a pwCFS in it as well who took their own life).
     

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