||Sources of good information are critical components of a canary's support network. Since our condition is poorly understood, few doctors can take the time to seek out and study the relevant research. We end up being our own researchers.
If you know other good sources of information and/or support to recommend, so I can add them here. Catherine
Web Sites (some of which have associated forums or email lists).
The hardest part of offering a website is keeping it current especially when you have health challenges keeping you from the computer. A Canary's-Eye view suffers from cobwebs just like many of the sites mentioned below. Still there is good stuff on all of them.
(We need to organize a network that would enable us to each focus on a specialty, and not duplicate each other's work! Then maybe we'd each have more time for keeping our sites updated.)
- American Academy of Environmental Medicine this site is primarily for networking for the medpros. But there is a searchable database of the members who qualify as "referable."
- Chemical Injury Information Network. Publish photocopies of articles from medical journals relevant to MCS, and a newsletter (see below). Cindy Duerhing, the original director, won the "Alternative Nobel" Right Livelihood Award in 1997. Highly useful.
- Chronic Syndrome Support Association a 501(c)3 non-profit corporation to educate the general population and health-care professionals who lack current knowledge of the research being done, and potential research that needs to be done, on these serious, yet invisible, Chronic Immunological and Neurological Disorders (CIND). (See Alphabet Soup.) From November 1997 to Winter 2001, this group published The Syndrome Sentinel. Back Issues are thoroughly described, and still available.
- Chronic Fatigue Treatments. Garrett Driscoll offers a blog here as well as the forum listed below.
- e.Hormone - Environmental Estrogens and Other Hormones. Center for Bioenvironmental Research of Tulane and Xavier Universities, New Orleans, LA.(See also Endocrine-Disrupting Chemicals.)
- Environmental Research Foundation "News and resources for environmental justice." Most of the site is also available in Spanish. Search engine. A newsletter, Rachel's Democracy & Health News , has articles, with documentation, including references to articles in medical journals (useful for showing to doctors).
- Health & Environment Resource Center articles, newsgroups, publications, and one-on-one correspondence. Last updated 1998. No search engine.At the Newsstand, an interesting assortment of articles.
- Haworth Press publishes a lot on Chronic Fatigue, Fibromyalgia, & Chronic Pain. Their site is buggy, but you may be able to get information there from their publications.
- Human Ecology Action League National HEAL publishes a paper newsletter (see below) and various other publications (detailed on the site), and organizes a network of support groups. There's a lot new on the site as of Nov 02, including useful links, including information on Social Security Disability.Their print mag is one of the two best canary publications; the site is now nearly as good.
- Lassen Technologies: Resources for the Chemically Sensitive / Environmentally Ill extensive and useful, with a search engine.
- MCSurvivors A Resource Web Site for Multiple Chemical Sensitivity and Environmental Illness. Extensive, no search engine.
- Multiple Chemical Sensitivity "about MCS, CFS, Fibromyalgia,GWS, and Tourette's Syndrome; the health risks of using perFUME, fabric softeners, and air fresheners ('air poisoners'!). Visitor Remarks Page has long messages, gives email addresses of visitors. By Jacki and Gorden.
- National Institute of Environmental Health Sciences part of NIH.
- Seventh Generation. These folks sell their products, but they're also righteous crusaders, and it's nice to see what a dedicated commercial site can accomplish. Focus is environmental, not medical. Newsletter, The Non-Toxic Times, can be read here and/or sent to you email.Search engine may be slow and/or buggy.
- State/Regional Organizations:
- Amalgam since 1990 this list has been investigating scientific evidence of damage from mercury, as well as possible treatment methods.
- Autism Answer the forum of Dr. Amy Yasko, Nutrigenomics pioneer. Cutting edge science; applies to other many other conditions besides autism. Yasko believes many medical problems start with a genomic condition, and then are triggered or aggravated by chemicals and disease organisms. (See her essay "The Canary in the Coal Mine.)
- Autism-Mercury at Yahoo! "To discuss current issues related to the increasing incidence of autism the potential link between excessive mercury exposure ... In addition to mercury, we also discuss other heavy metals."
- Bioelectromagnetics Discussion Group at Yahoo! Groups "a forum for scientists and non-scientists alike to share their views on the science of bioelectromagnetics, which is the scientific study of the interaction of electromagnetic energy (at frequencies ranging from zero hertz through those of visible light) and acoustic energy with biological systems. Open, public group, moderated by members of The Bioelectromagnetics Society (BEMS), but not an official activity of the society.
- CFAlliance · CFIDS, CFS, ME, FM & related illnesses. In addition to a Yahoo! group, they offer
- a quarterly newsletter (via mail or email)
- an international pen pal program for all ages
- free health book Eevents
- a "good doctor" list (via email only)
- a list of recommended books
- cfcured for people sharing information on alternative therapies for CFS, CFIDS/ME/MCP, etc.
- CFSFMExperimental Experimental Treatment of CFS/FM/etc. At Yahoo! Some way-out alternatives here.
- Chemical Injury Support a group at Yahoo! that has their own website explaining how they work. This is the fourth incarnation of this group which keeps outgrowing its space. The previous incarnation is currently a huge archive at MCS/CI-Hope2.
- Chronic Fatigue Treatments Forum
- EMF-L. The archives of this list are not up-to-date, for want of a webmaster but the list is active. Moderated by an expert, Roy Beavers; keeps to the subject; highly useful. To subscribe send him email.
Records from this list are in two places:
- EMF-Link WebBoard Conferences on the site of EMF-Link "a biomedical science and engineering clearinghouse on Electrical and Magnetic Fields (EMF)." Although several sections of this site require subscription, anyone can register for the conferences, which have useful technical information.
- Environmental Illness 001 at Yahoo! Comprehensive.
- Fibromyalgia & Chronic Fatigue Syndrome Message Board at ProHealth. There are several other relevant "boards" there too.
- Green Canary at Yahoo! For "eliminating unnecessary toxic chemicals from our lives, and replacing them with the elements of health and the alternatives offered by the natural world around us."
- Healthy Awareness Candida Forum this site uses a tree display for discussion threads.
- Infection And Inflammation 2 at Yahoo! "To discuss the research and treatment of chronic infection and chronic inflammation, as related to difficult-to-treat, chronic illnesses, such as Chronic Fatigue Syndrome (CFS, ME), fibromyalgia, Lyme Disease, chronic sinusitis, chronic osteomyelitis (bone infection incl. jaw & sinus), GWS, inflammatory bowel disease (IBS/IBD), Hashimoto's Thyroiditis, chronic fungal infections, cardiac disease, interstitial cystisis, prostatitiskn, Crohn's Disease, MCS, asthma, arthritis, and numerous other vaguely understood illnesses and "autoimmune" disorders that may have an infectious basis.
- Invisible Illness DisabilitySupport List at Yahoo! "For persons needing assistance with claims for disability programs who are suffering from chronic invisible illnesses such as FMS, MPS, CFS, MCS, GWS, NMH and CFIDS as well as APS /ISAC."
- MCS-Canadian Sources Support Group at Yahoo! "We also discuss invisible illnesses as they relate to chemical sensitivities, for example: Myalgic Encephalomyelitis, Fibromyalgia, Lupus, Asthma, and Allergies."
- MCS-CI-Heal at Yahoo! "for sharing what has worked for you or people you know in healing from MCS-CI, and for asking for ideas."
- MercuryFillings at Yahoo!
- Metals Discussion sponsored by CFS Nutrtion.
- Sulfur stories group at Yahoo!
- "A forum for people who have seen very positive or very negative responses to sulfur supplements of various sorts."
- This group focuses on examining individual experience scientifically, considering both published research and logical deduction from observation. Not a chat group.
- Run by DAN! think-tank researcher Susan Cowen Owens.
- Williss discussion group at Yahoo! moderated by Willis S. Langford. Though he focuses on autism, the biochemistry information here is useful for many canary disorders. See my page The Autism Connection.
- More are listed at Mailing lists, BB's, Discussion Groups (these are groups with no websites) Provided by MCSurvivors. Unfortunately as of 4 June 2007, when I updated everything else on this page, most of these seem dead. I'll try to check them all soon. (I have a lot of sympathy for the webspinner; I'm terrible at keeping these up to date too.)
- Finally, you can find many more through the search engine at Yahoo!Groups
- For example, I searched for "MCS" and got 1004 hits. There were lots for other uses of the acronym, but also more of relevance to canaries than I can manage to investigate or list here.
- I did look through the first 50, and added several here. (Some I didn't list are highly specialized, but they might be just what you want. Find them by entering more specific terms in the search engine.)
- The best method to find the ones that suit you is to start with one or two general ones, and when members there mention information that strikes you as interesting, and say they got it from another group, go check out that one.
In addition to articles and news about research, these provide ads for care providers, products and distributors. The two I subscribe to are...
- The Human Ecologist
covers a wide variety of issues -- medical research, legal developments -- "how I did it" stories, and more. Published by the Human Ecology Action League (see above).
- Our Toxic Times
focuses a bit more on medical developments, with thorough documentation although they have human interest articles, Published by the Chemical Injury Information Network. An index of major subjects (by subject and by issue), for January 1994 through October 2004, is on their site.
A donation in any amount will get you a subscription; write
Our Toxic Times
PO Box 301
White Sulphur Springs, MT 59645-0301
(And there are many good books... but I think I'll let the other canary webspinners list them.)
In addition, see my list of
Non-canary Organizations Raising Awareness about Chemicals