Fw: Chemical Intolerance and Multiple Chemical Sensitivities

[Guest guest]

Martha Murdock, Director

National Silicone Implant Foundation | Dallas Headquarters

" Supporting Survivors of Medical Implant Devices "

4416 Willow Lane

Dallas, TX 75244-7537

----- Original Message -----

From: " m keeling " <keeling.m@...>

" Kim Hoffman " <krhoffman@...>; " " <dz@...>;

" MARTHA-NSIF@... " <MAM-NSIF@...>; " sey "

<fuchsmorrissey@...>; <wan6922@...>; <S3733@...>;

" ruby rahn " <rubyrm@...>

Sent: Friday, September 06, 2002 6:23 PM

Subject: Chemical Intolerance and Multiple Chemical Sensitivities

> Chemical Injury Information Network (CIIN) has prepared a packet of

> information and is asking for help in contacting Congressional

> representatives to ask for Congressional support of a meeting to establish

a

> case definition for chemical intolerance and chemical sensitivities. If

you

> would like to help with this project, please contact CIIN at PO Box 301,

> White Sulphur Springs MT 59645 (406/547-2255) (FAX 406/547-2455) Email

> chemicalinjury@.... CIIN states " Disorders of Porphyrinopathy are

also

> showing up in people with chronic fatigue, fibromyalgia, amalgam problems,

> and silicone implants. "

>

> The following is a statement prepared by CIIN regarding Chemical

Intolerance

> and Multiple Chemical Sensitivities:

>

> Proposed Meeting to Establish Case Definition(s)

> The U.S. Interagency Workgroup on Multiple Chemical Sensitivity

issued

> a draft report on MCS in 1998. The workgroup cited the lack of a case

> definition as a major problem in investigating MCS over six times in the

> report.

> Five surveys have reported that 15% of the population are reporting

some

> form of chemical intolerance, and 3 to 4% are reporting chemical

> sensitivities that require major life style changes. Clearly, with the

> number of people involved with this health condition, research is needed.

> Yet without a case definition, researchers have been hampered, and those

> affected are getting impatient with health care officials who appear

> determined to leave them in medical limbo.

> Therefore, CIIN is requesting Congressional support to require the

> Centers for Disease Control, the National Institutes for Environmental

> Health Sciences, and the Agency for Toxic Substances to host a meeting

> specifically to write, and have published in the Federal Register and/or

> NIEHS' Environmental Health Perspectives, a case definition of definitions

> for chemical intolerance and chemical sensitivities suitable for applying

> for government research grants on chemical health issues.

> The meeting or workgroup should be composed of five types of

> participants. Invitees should represent all of the various interests with

> an equal number of government representatives, researchers that

investigate

> psychological causes, researchers that investigate physiological causes,

and

> treating physicians.

> In addition, members from the MCS community should be included, though

> their numbers need not be equal to the other participants. MCS

participants

> should be considered from the three largest national advocacy groups.

They

> are: National Coalition for the Chemically Injured, MCS: Health and

> Environment, and the Chemical Injury Information Network.

> Also, at least one meeting to hear public comments on the preliminary

case

> definition(s) should be held before the definition(s) is published.

> While the participants in the workgroup may work out many of the

details

> of preliminary definition(s) via conference calls, e-mail and the like,

CIIN

> believes the final version of the definition(s) should be approved at an

> open meeting where interested parties may hear and observe the final

> decision-making process.

> CIIN requests that you send letters to the above three agencies in

> support of this proposal.

>

> Keeling

>

>

>