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

[Dolphin]

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

Measures Taken by European Countries for Multiple Chemical Sensitivity (MCS). A Danish Health Ministry Report on Enquiries Made of 11 European Governments (2010)
English Translation by Harry Clark with Charlotte Anker, Martine Bechmann, Mervi Herrala, Sandra Johansen and Monika Senior.

Translation C2010 MCS Society of Australia

There are responses from the following countries:

I) Belgium .................................................................................................... 4
II) Finland .................................................................................................... 4
III) France .................................................................................................... 5
IV) Italy ........................................................................................................ 6
V) Luxembourg ............................................................................................ 7
VI) The Netherlands .................................................................................... 7
VII) Spain ..................................................................................................... 8
VIII) Britain .................................................................................................. 8
IX) Sweden .................................................................................................. 9
X) Germany ............................................................................................... 11
XI) Austria .................................................................................................. 13

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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

(viii) on Multiple Chemical Sensitivity (MCS):

Draft text (this is in a section on severe CFS/ME):
"Family life may also be affected as people with severe CFS/ME are often sensitive to sounds and smell. For example, the person may be unable to tolerate light or cleaning products whilst they are often unable to control their body temperature, thus impacting on the living environment."
and
"..Those caring for an individual with severe CFS/ME professionally need an understanding of the illness and the needs of the individual to meet the challenges of, for example, cooking or cleaning for an individual who is sensitive to the smell of food or of cleaning materials or bathing an individual who finds touch painful. Therefore proper training should be given about the condition with the involvement of the patient for any particular problems."


SH St Bartholomew's Hospital Chronic Fatigue Services
92 FULL 261 3 +

A patient with increased sensitivity to the smell of various chemicals may be suffering from multiple chemical sensitivity, but you would be making a dubious assumption to state this is part of or even characteristic of severely disabling CFS/ME. MCS is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of CFS/ME.

(See: Staudenmayer H, Binkley KE, Leznoff A, Phillips S. Idiopathic environmental intolerance: Part 2: A causation analysis applying Bradford Hill's criteria to the psychogenic theory. Toxicological Reviews 2003;22:247-61.

Bornschein S, Hausteiner C, Zilker T, Forstl H. Van den Bergh O, Devriese S, Winters W, Veulemans H, Nemery B, Eelen P, Van de Woestijne KP. Acquiring symptoms in response to odors: a learning perspective on multiple chemical sensitivity. Annals of the New York Academy of Sciences 2001;933:278-90.

Otto T, Giardino ND. Pavlovian conditioning of emotional responses to olfactory and contextual stimuli: a potential model for the development and expression of chemical intolerance. Annals of the New York Academy of Sciences 2001;933:291-309.)


GDG response:
This section has been removed.

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

 

[justinreilly]

bart's hospital writes:

"mcs is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of cfs/me."

lol!
__________

 

[Galena1]

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
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!

 

[Dolphin]

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!

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.

 

[IamME]

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 ). 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).