Tuesday, December 11, 2012

MCS hashtag for Twitter

In order for the MCS community to take better advantage of Twitter, we should have a hashtag to brand our messages. I have put out the tag "#ChemSensitivity" for all MCS-related tweets. By inserting this tag into each tweet, we can search all of Twitter for messages related to Multiple Chemical Sensitivities.

Here is an example from @ourtoxictimes of what this looks like:
(Misspelling alert! I meant HASHTAG not hahtag. Typing, another of my weaknesses. -J)

Hashtags in Twitter are a way for all writers to index their own messages without needing any central authority to be involved. It also allows a person to index a message for numerous subjects. However, Twitter etiquette says no more than 2 tags per message. I've seen tweets that are nothing but hashtags, and they become nearly meaningless.

We at CIIN are pretty new and inexperienced with Twitter, so we are not a source of help in making it work, but there are many sites with help already out there, and Twitter itself has pretty good help, I think.

A lot of MCSers do not or cannot use computers, but many of us can. Twitter and the blogs are places we can connect and pass on information, ideas and support if we just learn or start to use these social networking sources.

Wednesday, September 19, 2012

An MCS-friendly Drug list

The links in this post are obsolete. 
See the updated March 25, 2015 post.

In the February 2012 issue of Our Toxic Times (page 6), we published 2 lists of drugs that are likely to be better tolerated by those with Multiple Chemical Sensitivities (MCS). They come from web sites aimed at sufferers of Porphyria, a metabolic illness that is considered very rare. However, research has shown that many of those with MCS also test positive for one or more of the Porphyrias. That means there is a high likelihood that drugs tolerated by Porphyria sufferers will also be tolerated by MCS sufferers. It's not a guarantee, but it's a very good place to start. And these lists are something doctors can respect and work from, if you give them a copy of the list to keep.

The more extensive list is from South Africa where Porphyria is much more common than it is in the U.S.:

The other list is from the drug company Merck, and the link we gave is no longer active. I looked around the Merck site and found the list again at:

If you end up copying and pasting these links, remember to close up any spaces that may show up. There are never spaces in web addresses. Also, FYI, if you find a hyphen in the middle of a word in a web address, it probably should not be there, especially if the address does not work when you try it.

Porphyria is incurable, the same as MCS. It is manageable (as is MCS) by avoidance. There is testing for Porphyria, but only 4 of the 8 known Porphyrias can be tested for, and it's not cheap, so testing is not something to jump into without some thought.

CIIN has a lot of information on Porphyria, but it is available only to its members. Take care.

Saturday, April 21, 2012

Foreign EMF resources

Electrical sensitivity is not something I'm very knowledgeable about. However, I ran into a couple web sites that look like they might be interesting. Both are out of Europe where they seem to take this condition more seriously than we do.

The first is out of Great Britain:

The second is from Sweden, but there are many links or pages that are in English:
Once on the site, try these pages:
International Network: www.org.feb.nu/FEB/Addresses.html
International Links: www.org.feb.nu/FEB/Links.html

As you wander around the site, I'm sure you will find other pages in English, and you will find some links back to the U.S. Since this is not my area of speciality, I only scratched the surface here.

Good luck.

Wednesday, March 07, 2012

Search tool for antennas and towers

There is a web site that will let people look for cell phone towers and antennas. And other types of towers and antennas too. http://antennasearch.com/

This site may be of some help in locating a place to go that is more EMF-friendly. You input an address and it produces a report. So you need to have a spot in mind before this will be helpful.

If anyone has found a "big picture" source of this kind of info, please let me know. I suspect, but do not know, that a map of the country's worst and best EMF areas does not exist. If one does exist, it must be a bugger trying to keep it up to date. But if someone finds something like this, it would be good to know.

Thursday, February 16, 2012

MCS and medicine — not hopeless

The conflict between MCS and medications is tricky to deal with, but it is not hopeless. While there are no lists of tolerable drugs for MCS specifically, there are a couple lists on the Internet that have been compiled for those suffering from Porphyria.

Porphyria is a metabolic illness that afflicts many MCS sufferers. It might possibly affect the majority of MCS sufferers, but since not all varieties of Porphyria can be tested for, we just don't know. But in a practical sense, that doesn't matter because the lists provide a strong tool for doctors to use in trying to accommodate those with chemical sensitivities.

The doctors were very happy to have something in hand to refer to, especially a list that not only gave drugs to avoid but ones that were most likely safe to use.

The two lists we used for Cynthia's surgery are available at: www.porphyria.uct.ac.za/druginfo/drug-frameset-group.htm and www.merck.com/media/mmpe/pdf/Table_155-4.pdf. This Merck link is no longer active. I looked around the Merck site and found the list again at: